Cancer Reform Strategy - NHS Cancer Screening Programmes

Cancer Reform Strategy

Cancer Reform Strategy

DH INFORMATION READER BOXPolicyHR/WorkforceManagementPlanning/ClinicalDocument purposeEstatesPerformanceIM & TFinanceSocial Care/Partnership WorkingPolicyROCR Ref: Gateway Ref 9092TitleAuthorCancer Reform StrategyDHPublication date 03 Dec 2007Target audienceCirculation listDescriptionPCT CEs, NHS Trust CEs, SHA CEs, Care Trust CEs, MedicalDirectors, Directors of PH, Directors of Nursing, LocalAuthority CEs, PCT PEC Chairs, NHS Trust Board Chairs,Directors of HR, Directors of Finance, GPs, CommunicationsLeads, 'Copied to CEs of NHS Foundation Trusts forinformation'PCT CEs, NHS Trust CEs, SHA CEs, Care Trust CEs, FoundationTrust CEs , Medical Directors, Directors of PH, Directors ofNursing, Local Authority CEs, PCT PEC Chairs, NHS TrustBoard Chairs, Directors of HR, Directors of Finance, GPs,Communications Leads, OtherThe Cancer Reform Strategy aims to improve cancer services.Cross-reference The NHS Cancer Plan published in 2000Superseded documentsAction requiredTimingContact detailsFor Recipient’s usen/an/an/aLindsay WilkinsonCancer ProgrammeRoom 401Wellington HouseSE1 8UG02079724199www.dh.gov.uk

ContentsPart 1: IntroductionForeword by the Prime Minister 3Foreword by the Secretary of State 5Executive Summary 7What the Cancer Reform Strategy means for patients 12Chapter 1 The challenge of cancer 17Part 2: The next steps for cancerChapter 2 Preventing cancer 33Chapter 3 Diagnosing cancer earlier 43Chapter 4 Ensuring better treatment 56Chapter 5 Living with and beyond cancer 70Chapter 6 Reducing cancer inequalities 84Chapter 7 Delivering care in the most appropriate setting 93Part 3: Ensuring delivery and maintaining progressChapter 8 Using information to improve quality and choice 105Chapter 9 Stronger commissioning 110Chapter 10 Funding world class cancer care 118Chapter 11 Building for the future 124AnnexesAnnex 1 Documents published alongside the Cancer Reform Strategy 134Annex 2 References 135

3Forewordby the Prime MinisterAt one time or another every family in Britainwill have been touched by the shadow ofcancer. Almost one in four people die from thedisease and many more are still living with theafter effects of cancer today.Groundbreaking advances in our understandingof cancer and its treatment are leading tosignificant advances in the quality of care andtreatment which cancer patients receive. Over thelast ten years falls in mortality rates have saved60,000 lives and survival rates continue to improveyear on year for bowel and breast cancers. Andwe are investing more than ever before - £15billion over the next ten years – in researchingthe cures and treatments of the future, many ofwhich will impact on the lives of cancer patients.But at the same time there are new challenges.The number of people contracting cancercontinues to increase as our population agesand the consequence of successful treatment isthat more people are living after cancer thanever before. And because cancer is no longerthe death sentence it was, that serves to increasethe importance of care for cancer survivors.Our next steps must reflect the very highestpriority that we as a country attach tocombating this disease.Our action on cancer must focus more than everon prevention and reducing the risk of peopledeveloping the disease. Our commitment torolling out a cervical cancer vaccine to all girlsmust act as a signal that our understanding ofcancers is allowing us to do more than everbefore to help all of us stay cancer free. But thismust be combined with greater responsibility fromindividuals to change aspects of their behaviour,such as smoking, to reduce their own risk.Early diagnosis is vital if we are to achieve agenuinely world-class cancer service. Theextensions to screening and early diagnosiswhich we are setting out in this plan will allowall of us faster and easier access to screeningthan ever before. Our investment in digitalmammography will further improve the alreadysuccessful breast screening service.We must do more to ensure treatment is of thehighest quality and I believe this plan can act asa road map to a higher standard of care,available to all. Our investment in world-classradiotherapy will ensure all of us have access tothe best care when we are most in need.I welcome the opportunity this strategy hasprovided for working in partnership with charitiessuch as Cancer Research UK and MacmillanCancer Support and I look forward to thispartnership helping to deliver the improvementswe all want to see. We will work closely withMacmillan Cancer Support in developing asurvivorship initiative that I believe will make adifference to the lives of all those living with theaftermath of cancer and their carers.I would like to thank everyone who hascontributed to the improvements to cancerservices that we have seen in recent years, and Ilook forward to the truly world class cancerservice which I believe this strategy will deliver.The Prime MinisterGordon Brown

5Forewordby the Secretary of StateEach year around 230,000 people in Englandwill be diagnosed with cancer and around125,000 will die from it. In some way, cancerwill touch the lives of every person. Sincebecoming Secretary of State, the public, NHSprofessionals and of course patients haverepeatedly told me that tackling cancer shouldcontinue to be a high priority. I agree.In 2000 we published the NHS Cancer Plan.At that time too many of our cancer serviceswere failing to meet the expectations of peopleaffected by the disease, or to do justice to thededication and commitment of the peopleinvolved in caring for patients.Since then, progress has been impressive.Cancer mortality is falling, more patients aresurviving and people’s experience of cancerservices is improving. Of course, the NHS CancerPlan was a ten year plan and it is important thatwe finish the job. However there is also muchmore that we can and must do.There are significant challenges facing cancerservices. Incidence is increasing as ourpopulation ages, the inequalities gap for cancerremains too large and although advances in theway we treat cancer are offering newopportunities to cure more patients, they alsocome at a high cost.However there are also great opportunities todeliver further improvements and I am optimisticthat we can build world class cancer services foreveryone, free at the point of need and true tothe enduring values of the NHS.Thanks to the progress made since thepublication of the NHS Cancer Plan and theactions we are taking in this strategy, we arenow in a position to make ten pledges topatients:1. More will be done to help you to reduceyour risk of developing cancer;2. An increased likelihood of your cancer beingdetected earlier;3. You will have access to high qualitytreatment at every stage of your cancerjourney;4. Whether you are living with or beyond yourcancer, high quality information and support,tailored to your personal needs will beavailable;5. Irrespective of who you are or what yourbackground is, the NHS will work to give youaccess to the best possible cancer experienceand outcomes;6. Your care will be delivered in the mostclinically appropriate and convenient settingfor you;7. You will be able to access information aboutthe performance of your cancer services,enabling you to make informed choiceswhich reflect your priorities;8. Your PCT will be supported in ensuring thatthe best possible cancer services are availablefor you;

6 CANCER REFORM STRATEGY9. Your NHS cancer services will continue to beproperly funded; and10.We will keep striving to improve the qualityof cancer services available.These pledges are at the heart of the CancerReform Strategy. You can read more about theactions that will enable us to keep them onpage 13.We have set out our commitment to devolvepower and authority to local NHS bodies andtherefore the way in which we continue tomake progress on diseases such as cancer mustchange. The Cancer Reform Strategy provides astrong foundation for how we will move forward.During the transition from central direction tomore locally driven improvement we arebroadening the scope of some existing nationalrequirements for cancer services. For example,we will be offering routine breast screening toolder and younger women and we are includingsecond and subsequent cancer treatments in the31 day maximum waiting time standard ratherthan restricting it to just the first treatment.I want to take this opportunity to thank thethousands of healthcare professionals andmanagers involved in cancer. Their hard workand commitment has made possible thesignificant progress on cancer already achievedand will be vital as we now start to deliver theactions in this strategy.I would like to thank everyone who hascontributed to the development of this strategy,particularly members of the Advisory Board andworking groups who devoted so much time,enthusiasm and creativity to developing theproposals which are central to the actions weare announcing today.This strategy represents an ambitiousprogramme for cancer services over the next fiveyears and I look forward to working with all thestakeholders involved in cancer as we implementthe actions set out today, making real our visionof building a world class cancer service.The Rt. Hon. Alan Johnson MPSecretary of State for Health

7Executive Summary1. The Cancer Reform Strategy builds on theprogress made since the publication of the NHSCancer Plan in 2000 and sets a clear directionfor cancer services for the next five years. Itshows how by 2012 our cancer services can andshould become among the best in the world.2. There has been considerable progress madeon cancer over the past decade. Cancermortality has fallen, survival rates are improvingfor many cancers and patients’ experience oftheir care has improved. We have also madeprogress against smoking, detected morecancers early through screening and deliveredfaster diagnosis and treatment. Multidisciplinaryteams now provide more coordinated andhigher quality care for patients and there hasbeen considerable financial investment in cancerwhich has helped to deliver an expanded cancerworkforce and more equipment.3. Significant challenges and opportunitiesremain which this strategy seeks to address. Theincidence of cancer is increasing as people livelonger and more people are alive havingsurvived cancer. Our scientific understanding ofcancer is improving greatly, providing newopportunities for prevention, early diagnosis andbetter treatment. There is considerable potentialto introduce new service models for cancerwhich will improve both convenience andoutcomes for patients. We also know that wecan do more to improve the experience of carefor patients, both during and after treatment.4. The NHS has undergone significant reformsince the NHS Cancer Plan was published. Newsystems for commissioning and financialmanagement have been introduced and wehave new ways to provide patients with choiceand incentivise local improvement. This strategyis written in this new context and providesadvice and support to local commissioners andproviders on how to deliver high quality, costeffectivecancer services.5. The Cancer Reform Strategy sets out aprogramme of action across ten areas: six areasof action to improve cancer outcomes and fourareas of action to ensure delivery.Actions to improve canceroutcomesPreventing cancer6. Over half of all cancers could be prevented bychanges to lifestyle. Taking cross-governmentaction to tackle the major risk factors for cancer,improving awareness and encouraging people toadopt healthy lifestyles is therefore crucial toimproving cancer outcomes.7. Smoking is the single largest preventable riskfactor for cancer. As well as maintaining thehigh price of tobacco and taking action toreduce the availability of illicit tobacco, thegovernment will consult during Spring 2008 onproposals for the next steps in tobacco controland the further regulation of tobacco products,including the display of tobacco at the point ofsale, access to tobacco from vending machinesand packaging.8. The evidence linking obesity to cancer hasbecome much stronger since the publication ofthe NHS Cancer Plan in 2000. The governmenthas committed to developing a crossgovernmentstrategy to tackle obesity and thiswill be published shortly.

8 CANCER REFORM STRATEGY9. Excessive alcohol consumption is stronglylinked to an increased risk of several cancers. Totackle this, a programme of activity is plannedfor next year and beyond, including a sustainednational communications campaign to improvethe public’s knowledge of units of alcohol andensure everyone has the information they needto estimate how much they drink, targetedinformation and advice for people who drink atharmful levels and consultation on the need forlegislation regarding alcohol labelling.10. Skin cancer incidence is rising rapidly, almostcertainly reflecting patterns of behaviour overrecent decades. The government will expand theSunsmart campaign, which is aimed atpromoting behaviour change to prevent skincancer and raising awareness of the early signsof the disease. The Department of Health isreviewing options for regulation of the industryand as a first step will gather more informationabout the number and distribution of sunbedsand the scale of sunbed use by minors.11. Vaccination now presents a furtheropportunity in cancer prevention, specifically forcervical cancer. As announced in October, thegovernment is introducing a national vaccinationprogramme for young girls against the humanpapillomavirus. This will protect against thestrains of the virus which cause around sevenout of ten cases of cervical cancer.12. Given the importance of cancer prevention,PCTs and cancer networks should give highpriority to raising public awareness of cancer riskfactors.Diagnosing cancer earlier13. In general, the earlier a cancer can bediagnosed the greater the chance of a cure. Latediagnosis is the major factor contributing topoor cancer survival rates in this country.14. Screening is vital to diagnosing somecancers early. To improve and expand cancerscreening, the government will:– Build on progress on cervical cancerscreening, by reducing the variation ofcoverage between PCTs, informing womenof the result of their cervical screening testwithin two weeks of it being taken, usingnew technologies as and when the researchevidence supports this and tackling the fallingparticipation of women aged 25 to 35;– Extend breast screening to nine screeningrounds between 47 and 73 years, with aguarantee that women will have their firstscreening before the age of 50, facilitated bythe roll out of digital mammography;– Expand the NHS Bowel Cancer ScreeningProgramme from 2010 to invite men andwomen aged 70 to 75 to take part. By theend of 2010, decisions will be taken aboutpossible roll out to people in their 50s; and– Commission research on the feasibility of aUK trial of CT screening for lung cancer,working with the National Cancer ResearchInstitute.15. A new National Awareness and EarlyDiagnosis Initiative will coordinate a programmeof activity to support local interventions to raisepublic awareness of the signs and symptoms ofearly cancer and encourage people to seek helpsooner. This will include developing a tool formeasuring awareness levels and supporting highquality evaluations of pilot projects.16. We also want to understand more about thenature and extent of delays in cancer diagnosis.A national audit in primary care of newlydiagnosedcancers will be used to makedecisions about how best to provide moresupport to primary care professionals to ensurethe early diagnosis of cancer.Ensuring better treatment17. We need to build on the successes we havealready achieved in cancer treatment to ensurethat patients have fast access to high qualitytreatment for cancer, including surgery,radiotherapy and drug treatment.

EXECUTIVE SUMMARY 918. Excellent progress has been made onreducing waiting times. We will now extend therange of patients who benefit from the currentstandards:– The 31 day standard will be extended tocover all cancer treatments;– In addition to patients referred urgently bytheir GP, all patients with suspected cancerdetected through national screeningprogrammes will in future enter the 62 daypathway;– Hospital specialists will have the right toensure that patients who were not referredurgently by their GP, but who havesymptoms or signs indicating a highsuspicion of cancer, are managed on the 62day pathway; and– All patients referred to a specialist withbreast symptoms, even if cancer is notsuspected, should be seen within two weeksof referral.19. Surgery cures more patients of cancer thanany other intervention and cancer surgery willcontinue to improve. A pilot training programmefor laparoscopic bowel surgery will beestablished which will be fully evaluated forpotential national rollout.20. To achieve a world class radiotherapy servicelocal investment will be needed both inequipment and workforce. We want to ensurethat the recommendations for improvingcapacity in radiotherapy services that were setout in the National Radiotherapy AdvisoryGroup’s report are achieved and that providershave sufficient capacity to meet the 31 daywaiting time standard for all radiotherapy, notjust first treatment.21. Drug treatments for cancer have developedsubstantially over the past 20 years and are setto develop further. It is important that NICEguidance on new technologies is available assoon as possible. In future the default positionfor all new cancer drugs and significant newlicensed indications will be that they will bereferred to NICE, providing that NICE agrees thatthere is a sufficient patient population andevidence base on which to carry out anappraisal and that there is not a moreappropriate alternative mechanism for appraisal.Where possible, appraisal will be carried out inparallel with licensing. The National CancerDirector will repeat his evaluation of NICEapprovedcancer drug usage during 2008 toensure that patients across the country continueto have access to cancer drugs positivelyappraised by NICE.22. Current clinical audits do not collectsufficient information to understand whyvariations in the usage of drugs occur. We willtherefore ask all chemotherapy service providersto collect and return an agreed dataset on allpatients receiving chemotherapy. Better datacollection on chemotherapy activity will also aidPCTs in their planning.23. PCTs, working with each other in theircancer networks, will want to undertake areview of cancer chemotherapy and develop astrategic framework for chemotherapy services,setting out clear service specifications, takingaccount of forthcoming advice from theNational Chemotherapy Advisory Group’s reportwhich is expected in Spring 2008.Living with and beyond cancer24. Although patients’ experience of their carehas improved in recent years, we can do moreto support and empower patients throughouttheir cancer journey.25. We will improve information for patientsthrough a range product and pathwayinitiatives. Tumour specific national informationpathways will be launched in 2008, makingnationally agreed information available tofrontline cancer health professionals to offer topatients at key points in their cancer journey. Athree-way partnership between Cancerbackup,Cancer Research UK and Macmillan CancerSupport is developing a system to providesections of content to support theimplementation of information prescriptionswhich will provide patients with high qualityinformation, tailored to their individual needs.

10 CANCER REFORM STRATEGYWe will also expand the provision ofcommunications skills training for healthcareprofessionals.26. Commissioners will want to work withproviders to ensure they have robust systems inplace to ensure that patients experience goodcontinuity of care. They should give particularconsideration to the role of Clinical NurseSpecialists, who play a critical role in cancer care.27. Cancer patients and their families and carersmay need psychological support. Commissionersshould work collaboratively to ensure that goodpsychological support services are availablethroughout the cancer journey.28. We also want to improve the access patientshave to information on the financial supportthat may be available to them. Information onfinancial benefits will be made available on theforthcoming national information pathwaysfrom January 2008.29. As early diagnosis and treatment improves,more people are surviving cancer. A newNational Cancer Survivorship Initiative, inpartnership with cancer charities, clinicians andpatients, will consider a range of approaches toimproving the services and support available forcancer survivors.Reducing cancer inequalities30. There are major inequalities in cancerincidence, access to services and outcomes,according to deprivation, race, age, gender,disability, religion and sexual orientation. Thisstrategy therefore places a high priority onensuring that action is taken to reduce theseinequalities.31. The government will begin a NationalCancer Equality Initiative, bringing together keystakeholders from the professions, voluntarysector, academia and equality groups to developresearch proposals on cancer inequalities, testinterventions and advise on the development ofwider policy. The National Cancer EqualityInitiative will focus initially on optimising datacollection to enhance our understanding of theinequalities that exist, promoting research to fillgaps in the evidence and spreading goodpractice.Delivering care in the appropriate setting32. New models of care can bring considerableadvantages to patients. This strategy sets out arange of ways in which service models forcancer could be improved, based on two keyprinciples: first that care should be deliveredlocally wherever possible to maximise patientconvenience; and second that services should becentralised where necessary to improveoutcomes.33. In all cases, care must be delivered byproviders which conform to national standardssuch as the Improving Outcomes Guidance andwhich are fully integrated with other serviceswithin the cancer network.34. GPs and primary care professionals musthave quick and easy access to relevantdiagnostic tests, both to exclude cancer inpatients with a low chance of having cancer andto diagnose cancer quickly in patients with ahigh chance of having cancer.35. Regarding inpatient care for cancer, thereare significant opportunities to shift someservices from inpatient to ambulatory care.Evidence from successful pilots and internationalexperience confirms that this shift improvespatient experience and outcomes and increasesthe efficiency of services. The Cancer ServicesCollaborative Improvement Partnership and theCancer Action Team are developing aprogramme of work on inpatient managementto support local implementation of these newservice models.Drivers for deliveryUsing information to improve qualityand choice36. Collecting and using improved informationon different aspects of cancer services andoutcomes is central to delivering this strategy.Better information will enhance quality, informcommissioning and promote choice.37. National surveys will be developed to collectinformation on awareness of and attitudes to

EXECUTIVE SUMMARY 11cancer risk factors and symptoms amongdifferent groups within society and on patients’experience of treatment and care.38. We will also collect defined datasets ofclinical outcomes information as part of thenational model contract. To co-ordinate thiswork, a National Cancer Intelligence Network(NCIN) will be established, building, maintainingand quality assuring a new national repository ofcancer data. The partner organisations withinthe National Cancer Research Institute (NCRI)will help fund research on the data collated bythe NCIN, facilitating a more informed analysisof cancer services than has ever been possiblebefore. The NCIN will publish an annual reportdetailing the changes to clinical outcomes andpatient experience across the country.Stronger commissioning39. Everyone with a commitment to deliveringworld class cancer services should have a role toplay in helping deliver this strategy. However,strong commissioning will be particularlyimportant in driving service quality and ensuringvalue for money.40. Cancer networks will support PCTs in theircommissioning role. They will provide themechanism through which PCTs can carry outtheir partnership responsibilities effectively andthey will act as agents for commissioners,maintaining the dialogue with clinical teams andusers, agreeing clinical guidelines and pathwaysand driving forward innovative, high quality care.41. A guide for cancer commissioners iscurrently in development, which will set out theappropriate level for the commissioning ofdifferent cancer services. Also, we aredeveloping an electronic commissioning toolkitto provide commissioners with comparative dataon incidence, survival and mortality from cancerand on information available from nationalsources such as hospital episode statistics.Funding world class cancer care43. The government is committed to fundingworld class cancer services but also expects theNHS to deliver value for money.44. New investment is being made to fundnecessary increases in activity relating to theincreased incidence and longer survival of cancerand also to fund innovations deemed costeffectiveby NICE and the new vaccinationprogramme for HPV.45. PCTs will have the funds to cover thecommitments made in the Cancer ReformStrategy but will have to ensure thatexpenditure which does not benefit patientsis eliminated.Building for the future46. New opportunities and challenges willcontinue to arise so we will need to continue toreassess the progress made in tackling cancerand refine our approach to reflect newdevelopments.47. In order to ensure that we build for thefuture of cancer services, we will:– Support workforce development andtraining;– Conduct good quality horizon-scanning toplan for new developments and innovations;– Increase support for research;– Continue working in partnership withstakeholders;– Provide national leadership and support; and– Publish annual reports on progress.42. Changes to Payment by Results will be madetaking account of findings from a review of PbRand cancer.

What the Cancer Reform Strategy meansfor patientsThe actions we are taking are intended toensure that every person has access to worldclass NHS services at every point of the cancerpathway. Our pledge to patients is that:1. More will be done to help you to reduceyour risk of developing cancer:● Young girls will be offered vaccination tosignificantly reduce their risk of developingcervical cancer;●●Awareness of risk factors will be tracked andaction taken to improve public awareness;andWe will go further on tackling risk factors forcancer such as smoking, obesity andexcessive exposure to ultraviolet light.2. There will be an increased likelihood ofyour cancer being detected earlier:● Screening programmes for cervical, boweland breast cancer will be improved andexpanded;●A new National Awareness and EarlyDiagnosis Initiative will be launched tomeasure symptom awareness, develop keymessages and test, evaluate and roll outinterventions to improve it; and3. You will have access to high qualitytreatment at every stage of your cancerjourney:● More patients will be covered by existingwaiting time standards;●●●●Further action will be taken to reduce cancerwaiting times for all forms of treatment,including surgery, radiotherapy andchemotherapy;Expanding the capacity and effectiveness ofradiotherapy services will be a priority;Action will be taken to ensure faster accessto clinically and cost effective treatments;andVariations in treatment usage, bothinternationally and within England, will bemonitored.4. Whether you are living with or beyondyour cancer, high quality information andsupport, tailored to your personal needswill be available:● Action will be taken to inform and empowerpatients so that they can play as active a rolein decisions about their care and treatmentas they wish;●A national audit of primary care will bedeveloped, examining the extent of anydelays in diagnosis and identifying thesupport which will help GPs identify potentialcancers earlier.●●Priority will be given to ensuring there isadequate provision of Clinical NurseSpecialists;Support will be available to help patientscope with the cost of cancer, includingadvice on benefits and returning to work;and

WHAT THE CANCER REFORM STRATEGY MEANS FOR PATIENTS 13●A new National Cancer Survivorship Initiativewill be established to improve the ongoingsupport available to people who have beentreated for cancer.5. Irrespective of who you are or what yourbackground is, the NHS will work to giveyou access to the best possible cancerexperience and outcomes:● A National Cancer Equality Initiative will belaunched to optimise data collection toenhance our understanding of theinequalities that exist, promoting research tofill gaps in the evidence and spread goodpractice; and●Challenging goals will be set to reducemortality in every cancer network area by2012, with particular attention being paidto reducing inequalities.6. Your care will be delivered in the mostclinically appropriate and convenientsetting for you:● Irrespective of where treatment is delivered,it will be fully integrated;●●The Improving Outcomes Guidance will befully implemented and services will only bedelivered by providers which conform tothese important national standards; andOpportunities to reduce the length ofhospital stay and minimise emergencyadmissions will be taken, benefiting patientsand saving resources.7. You will be able to access informationabout the performance of your cancerservices, enabling you to make informedchoices which reflect your priorities:● Information on levels of public awarenessabout cancer, the experience reported bypatients and the clinical outcomes ofdifferent hospitals will be collected, analysedand published by the new National CancerIntelligence Network; and●This information will be used to enablepatients to make choices, hospital teamsto identify areas of weakness andcommissioners to incentivise improvementsin quality.8. Your PCT will be supported in ensuringthat the best possible cancer services areavailable for you:● Cancer networks will support PCTs incommissioning high quality, safe andeffective cancer services;●●Tools will be made available to PCTs toenable them to commission effectively andbenchmark their performance, includingnational guidance, peer review data and acommissioning guide and toolkit; andPatients will play a central role in helpingcommission cancer services.9. Your NHS cancer services will continue tobe properly funded:● Following record increases in spending, wewill continue to make money available to theNHS to meet the challenge of rising cancerincidence and new treatments;●●●By reducing spending on services which donot make a difference to patients, we will beable to invest more in services which do;Variations in spending on cancer by PCTs willbe closely monitored, as will differences ininternational spending; andCancer spending will continue to be focusedon cost effective interventions which make adifference to patients.10. We will keep striving to improve thequality of cancer services available:● Training programmes will be organised toensure a skilled and flexible cancerworkforce;●Funding will be made available to the NHSto invest in the latest cancer equipment andprogress on this will be monitored;

14 CANCER REFORM STRATEGY●●●Regular expert horizon scanning will beundertaken to ensure that we identify andprepare for new developments which canhelp patients;The government will work closely with thevoluntary sector and others to ensure thatresearch into all aspects of cancer remains apriority; andThe National Cancer Director will continue toprovide leadership and annual reports on theprogress made on delivering this Strategy willbe published.

Part 1:Introduction

17Chapter 1:The challenge of cancerChapter summary●●●●Substantial progress has been made in cancer in the last decade, particularly since thepublication of the NHS Cancer Plan in 2000. However, major challenges remain;This Cancer Reform Strategy aims to: save more lives; improve patients’ quality of life;reduce inequalities; build for the future; enable cancer care to be delivered in the best placeat the right time and achieve maximum value for money;The strategy has been developed in consultation and partnership with a broad spectrum ofgroups and individuals involved in cancer; andWhile national oversight of cancer services will remain, implementation of this strategy at alocal level will depend on strong commissioning and continued partnership working.Introduction1.1 Every year around 230,000 people inEngland will be diagnosed with cancer andaround 125,000 will die from the disease,making it the leading cause of mortality inpeople under the age of 75.1.2 Cancer is also a major cause of concern tothe public. In a Cancer Research UK survey overa quarter of people said that cancer was thething they most feared, topping the list overAlzheimer’s, a heart attack and terrorism. 1A Cancerbackup poll found over three quartersof adults think cancer should be a nationalhealth priority. 2Progress on cancer1.3 During the 1980s and 1990s the UK was inthe unacceptable position of having survivalrates that were amongst the poorest in WesternEurope. Patients often waited long periods fordiagnosis and treatment. Coordination of carebetween all the healthcare professionalsinvolved in cancer was often lacking andstandards of care varied widely across thecountry. That is why the government set outFigure 1: Biggest causes of premature death for people aged under 75 in England in 2005DiseasePercentageCancer 38%Circulatory 28%Respiratory 9%External (Accidents, Suicides, Homicides) 7%Digestive 6%

18 CANCER REFORM STRATEGYambitious plans to improve cancer services inthe NHS Cancer Plan, published in 2000.1.4 Since then outcomes have improved:●●●●Cancer mortality in people under 75 fell byover 17% between 1996 and 2005. Thisequates to approximately 60,000 lives savedover this period;In 1996, 71,000 people under 75 died fromcancer in England. Ten years later in 2006this figure had dropped to 62,000;As shown by Figure 2 below, this means weexpect to exceed our target of a minimum20% reduction in cancer mortality by 2010from the 1995/97 rate;Survival rates for some cancers (such ascolorectal (bowel) and breast cancer) areimproving year on year, in line with otherEuropean countries (see Figure 3 below); and●Patients are reporting an improvedexperience of their own treatment and care(see Figure 9 in chapter 5).1.5 As Figure 4 below shows, in 2006, the UKranked ninth out of 28 European countries formale cancer mortality (where the first has thelowest mortality) and 22nd out of 28 for femalemortality. The high mortality in females reflectshigher smoking prevalence rates in the 1980sand 1990s in comparison to other Europeancountries.1.6 Since the implementation of the NHSCancer Plan we now have:●Better prevention – action on tobacco hasled to a fall in smoking rates (from 28% ofthe population in 1998 to 24% in 2005),amounting to 1.6 million fewer smokers;Figure 2: Cancer mortality (persons under age 75) from all cancers in England, 1993 to 20061601401201008060402001993/94/95141.21994/95/961995/96/971996/97/981997/98/991998/99/20001999/2000/012000/01/022001/02/032002/03/042003/04/053 year average2004/05/062005/06/072006/07/082007/08/092008/09/102009/10/11Target:20%minimumreductionfrom1995-97baselinerateRates are calculated using the European Standard Population to take account of differences in age structure.ICD9 data for 1993 to 1998 and 2000 have been adjusted to be comparable with ICD10 data for 1999 and 2001 onwards.*Exponential projection based on data for the 10 years 1997-2006.Source: ONS (ICD9 140-209; ICD10 C00-C97)117112.9

CHAPTER 1: THE CHALLENGE OF CANCER 19Figure 3: Five year period survival profiles (percentage) from 1991 to 2002 for colorectaland breast cancer 360100804060204020001991-931994-96 1997-99 2000-02 1991-93 1994-96 1997-99 2000-02ColorectalBreastNorthern EuropeSouthern EuropeUK and IrelandEastern EuropeCentral Europe●More cancers detected through screening– the breast screening programme has beenextended to encompass all women aged 50to 70 years. Between 2000 and 2005 thenumber of new cancers diagnosed throughbreast screening increased by over 60%.A national bowel cancer screeningprogramme has also been launched and isthe first screening programme to target bothmen and women. Between the start of theroll out in April 2006 and October 2007,over 400 cancers have been detected, outof 305,000 returned kits;– More than 99% of patients now receivetheir first treatment for cancer within onemonth of diagnosis (in 1999/2000 only31% of patients surveyed reported thatthey received their first treatment within amonth of their first hospitalappointment 5 ); and– Almost 97% of urgently referred patientswho are subsequently diagnosed withcancer start their treatment within twomonths of referral, compared with75% as recently as 2004.●Faster diagnosis and treatment – waitingtimes for cancer care have reduceddramatically:– Over 99% of patients referred urgently bytheir GP with a suspicion of cancer arenow seen within two weeks (comparedwith 63% in 1997);● Improved access to better treatments –there has been a major increase in the use ofdrugs to treat cancer which have beenapproved by the National Institute for Healthand Clinical Excellence (NICE), with lessvariation in their usage between cancernetworks.

20 CANCER REFORM STRATEGYFigure 4: Comparisons of cancer mortality in Europe in 2006 4Estimated age standardised mortalityrates per 100,000 population400350300250200150100500MaleIcelandSwedenMaltaFinlandCyprusSwitzerlandNorwayGermanyUKGreeceLuxembourgPortugalItalyAustriaIrelandNetherlandsSpainDenmarkFranceBelgiumSlovakiaSloveniaEstoniaLithuaniaPolandLatviaCzech RepublicHungaryEstimated age standardised mortalityrates per 100,000 population250200150100500SpainGreeceFinlandPortugalCyprusMaltaSwitzerlandFranceItalyLuxembourgGermanyAustriaLatviaFemaleEstoniaSlovakiaSwedenLithuaniaBelgiumNorwayIcelandSloveniaUKNetherlandsIrelandPolandCzech RepublicHungaryDenmark

CHAPTER 1: THE CHALLENGE OF CANCER 211.7 These improvements have been supportedby significant additional investment. Estimatesindicate that cancer services received an extra£639 million of funding between 2000/01 and2003/04, exceeding the NHS Cancer Plan objectiveof £570 million. In total, approximately £4.35billion was spent on cancer services in 2006/07,amounting to 5.2% of all NHS spending. 6 Thisspending has helped to improve the quality andcapacity of cancer services. For example:●●Unprecedented numbers of new CTscanners, MRI scanners and Linearaccelerators have been installed;Major cancer centre developments areunderway (in, for example, Leeds, Hull,Oxford, Newcastle, Southampton andTaunton and Somerset);●●●New clinical nurse specialist posts have beenestablished, improving the delivery ofinformation, support and care to patients;Support for specialist palliative care andhospices has been enhanced; andThe cancer workforce has expandedsignificantly (see Figure 5).1.8 The cancer nursing workforce has alsogrown. Recent analysis shows that there arecurrently approximately 2,000 Clinical NurseSpecialists (CNSs) related to individual cancersites, which excludes nurses working inchemotherapy and palliative care. Figures arenot available for 2000, but this undoubtedlyrepresents considerable expansion.Figure 5: The expanding cancer workforceHeadcountProjectedPercentagepercentageincrease Projected increase2000 2006 2000-2006 2012 2006-12Consultants in Selected Specialties 9,681 13,137 36 17,852 36with a Major Role in Cancer Care– General Surgery 1,331 1,756 32 2,387 36– Urology 382 510 34 700 37– Anaesthetics (inc. intensive care) 3,322 4,698 41 6,464 38– Respiratory medicine 439 583 33 815 40– Gastroenterology 481 639 33 985 54– Clinical Radiology 1,585 2,061 30 2,320 13– Histopathology 865 1,087 26 1,611 48– Clinical Oncology 307 482 57 636 32– Medical Oncology 133 233 75 395 70– Palliative Medicine 111 185 67 402 117– Haematology 527 663 26 804 21– Cardiothoracic Surgery 198 240 21 333 39All radiographers 12,489 14,564 17 17,585 21– Diagnostic Radiographers 11,036 12,535 14 14,605 17– Therapeutic Radiographers 1,453 2,029 40 2,980 47

22 CANCER REFORM STRATEGY1.9 This investment has been accompanied byradical reform the way that cancer services andcancer research are organised:●Around 1,500 Multi Disciplinary Teams forcancer have been established in line withimproving outcomes guidance producedinitially by the Department of Health andmore recently by NICE;Looking forward1.11 While the outlook for cancer has beentransformed over the past decade, majorchallenges remain:●The incidence of cancer continues to rise dueto the ageing population and is predicted toincrease by around a third between 2001and 2020 (see Figure 6);●●Services are being redesigned so thatcomplex surgery is performed only byspecialist teams, in line with NICE guidance;Thirty cancer networks coordinate servicesfor patients across all aspects of care andincrease collaboration across organisationalboundaries;●●The link between obesity and cancer is nowmuch clearer than it was seven years agoand the substantial rise in levels of obesitywill further increase the numbers of newcancers;Major inequalities in cancer death ratesbetween rich and poor remain;●The National Cancer Research Institute (NCRI)has been established, bringing togethermajor research funders and ensuringstrategic co-ordination of the nation’s cancerresearch efforts; and●Survival rates for some poor prognosiscancers have remained largely unchanged,such as for lung cancer and pancreaticcancer, partly due to difficulties in diagnosingthese cancers early;●Cancer research networks have beenestablished to increase recruitment ofpatients into cancer clinical trials. In the lastfive years, this has led to the tripling of thenumber of cancer patients entering trials andin each of the last two years England hashad the highest national per capita rate ofcancer trial participation in the world.1.10 As a result of clear vision, investment,reform, new technologies and treatments andnot least the hard work and dedication ofthousands of individuals, we have madesignificant progress against cancer. 7 Thisassessment is supported by the government’sindependent spending watchdog, the NationalAudit Office, which in 2005 concluded that“substantial progress has been made to date,with many targets in the plan met or on courseto be met”. 8●●●●Advances in medical technology are creatingmajor new opportunities to diagnose andtreat cancer more effectively but these willplace additional cost and capacity pressureson services (see Box 1);The NHS Cancer Plan was a ten year planand the work started by it needs to becompleted and sustained, for example onservice reconfiguration;An ‘information deficit’ remains whichinhibits patient care management and limitsthe ability of patients to make informedchoices on treatment and services; andMore people are now surviving cancer orliving with it for many years. They mayrequire different kinds of care and supportfrom those traditionally available.

CHAPTER 1: THE CHALLENGE OF CANCER 23Figure 6: Trends in Cancer Incidence 9200,000Cancer Incidence 2001 and predicted in 2020150,000Incidence100,00050,0000Men20012020Female●●●●●Box 1: Advances in medical technologyfor cancerNew techniques such as liquid-basedcytology and regular use of two-viewmammography are allowing moreaccurate and earlier diagnosis;PET-CT scanning enables more accuratestaging of cancer, ensuring the mostappropriate treatment can be given;Minimally invasive surgery techniquesare reducing complications and enablingpatients to make a faster recovery;Better radiotherapy means that higherdoses of radiation can be moreaccurately and safely delivered,improving outcomes and reducing sideeffects; andNew targeted therapies are providingdifferent ways of treating cancer andwith more than 50% of all new drugsin development being aimed at cancer,further advances can be expected.Aims of the Cancer ReformStrategy1.12 In order to build on the progress alreadymade and meet the challenges that remain, thegovernment has developed this Cancer ReformStrategy to set out the next steps for deliveringcancer services in England.1.13 During the 1990s, survival rates improvedin England but we did not close the gap withthe best European countries. By 2012 our cancerservices can and should become not only amongthe best in Europe but among the best in theworld. This is the aspiration that drives thisCancer Reform Strategy.1.14 In order to compare our services to othersworldwide, we will collaborate with partners inEurope and in other countries such as Australia,New Zealand, Canada and the USA to sharedata and assess our performance.1.15 To achieve this aspiration, the CancerReform Strategy (CRS) aims to:●Save more lives – through prevention ofcancer whenever possible and through earlierdetection and better treatment;

24 CANCER REFORM STRATEGY●●●●●Improve patients’ quality of life – by ensuringthat services are patient-centred and wellcoordinated and by offering choice wherethis is appropriate;Reduce inequalities in public awareness ofcancer, in access to services and in servicequality – thereby reducing inequalities incancer outcomes;Build for the future, through education,research and workforce development;Achieve maximum value for money for thetax payer and the NHS, by ensuring thatresources are directed where they will yieldthe most benefit; andEnable cancer care to be delivered in the bestplace, at the right time.1.16 This strategy takes account of thechallenges related to cancer and the likelydevelopments in society up to and beyond2020. Major developments in scientificunderstanding can be expected over this periodbut it is difficult to predict which developmentswill impact on clinical practice in 13 years’ time.The strategy therefore focuses particularly onthe actions that are needed now and over thenext five years to maintain and build on recentprogress.1.17 The major strategic themes can be set outunder two headings: firstly, areas of actionneeded to improve cancer outcomes; andsecondly, areas of action needed to ensuredelivery.●●●●●Earlier diagnosis and treatment – if wecan diagnose more cancers early we canhave a significant impact on survival rates.Enhancing cancer screening, improvingpublic awareness of cancer symptoms andgoing further on cancer waits will help toachieve this;Ensuring access to cost effectivetreatments – we need to tackle the seriousshortage of radiotherapy capacity and thereare concerns about delays in our uptake ofnew cancer drugs. We also need toencourage the spread of improved surgicaltechniques;Improving patients’ experience – a higherpriority should be placed on improvinginformation for patients, face-to-facecommunication with health professionalsand co-ordination and continuity of care.We also need to do more to supportpatients throughout their survivorship;Reducing cancer inequalities – we cantackle inequalities in the experience andoutcomes of different groups in societythrough better data collection, researchand spreading good practice; andDelivering care in the most appropriatesetting – we can achieve the quickestpossible diagnoses and reduce unnecessarystays in hospital with new service models forcancer.1.19 The four areas of action needed to ensuredelivery are:1.18 The six areas where action is needed toimprove cancer outcomes are:●Prevention – over half of all cases of cancercould be prevented through changes tolifestyle such as quitting smoking,maintaining a healthy weight and avoidingexcessive alcohol consumption, but publicawareness of many of these and other riskfactors is low;●Better information – improved collectionand publication of data on clinical outcomesfor cancer will improve service quality andstrengthen commissioning and is aprerequisite for informed choice for patients.We also need to gather more information onpublic awareness of cancer risk factors andsymptoms and on patients’ experiences ofcancer care;

CHAPTER 1: THE CHALLENGE OF CANCER 25●●●Stronger commissioning – this strategy isdesigned to support commissioners inplanning and providing high quality cancerservices which reflect the needs of the localpopulation;Appropriate funding – appropriate fundingwill be provided to build world class cancerservices but commissioners will need toensure that money is well spent; andBuilding for the future – we need to buildon the progress we have seen in cancerresearch in recent years, including developinga new national repository of cancer data andenhancing research efforts in areas whereknowledge is lacking. We also need goodplanning to provide a skilled and flexiblecancer workforce for the future and todeliver high-quality facilities andenvironments for cancer care.1.20 This strategy has been developed inparallel with an End of Life Care Strategy,covering cancer and other conditions, which isanticipated to be published in parallel with thefinal report of the NHS Next Stage Review.To avoid duplication only those aspects of endof life care which are specific to cancer arecovered in this strategy.Development of the strategy1.21 Large numbers of individuals andorganisations have been involved in thedevelopment of the Strategy. These include:●●●●●Members of the Advisory Board and WorkingGroups;Clinicians and managers working throughoutthe NHS;Patients, including through a workshopspecifically for service users;Social care representatives;Cancer charities; and1.22 Many groups have devoted a great deal ofconstructive thought to how cancer policyshould develop to address the challengesoutlined above. For example:●●●We asked groups of experts, consisting ofhealthcare professionals, researchers andpatient representatives, to develop realisticvisions of how they believe services forparticular cancers could develop by 2012(see Box 2);Existing Department of Health advisorygroups on lung cancer & mesothelioma,bowel cancer, prostate cancer and children& young people with cancer met to discusstheir visions for cancer in 2012;The Cancer Campaigning Group, a coalitionof over 30 national cancer charities, publisheda report Getting it right for people withcancer: What the voluntary sector wants fromthe Cancer Reform Strategy, setting out somekey principles on which future policy shouldbe developed (see Box 3);● Cancer Research UK has developed its 2020goals (see Box 4);●●●●Cancer 52, an alliance of charities whichsupport people with less common cancers,has come together to consider what stepsneed to be taken to improve outcomes forthese cancers;The All-Party Parliamentary Group on Cancerpublished its ‘New Vision for Cancer’;Tumour-specific coalitions, such as theProstate Cancer Charter for Action and theUnited Kingdom Lung Cancer Coalition haveidentified areas for prioritisation in tacklingspecific cancers;The Academy of Medical Royal Collegesformed the Inter-Collegiate CancerCommittee to provide health professionals’perspectives on cancer policy;●Healthcare industry organisations.●The NCRI has consulted widely on cancerresearch needs and opportunities;

26 CANCER REFORM STRATEGYBox 2: Visions for 2012Bowel cancerBrain and central nervous system cancersBreast cancerCancer geneticsCancer screeningChildren and young people and cancerGynaecological cancersHead, neck and thyroid cancersLung cancer and mesotheliomaProstate cancerSarcomaSkin cancersUpper gastrointestinal cancersUrological (excluding prostate) cancersHaematological cancers●The Pharmaceutical Oncology IndustryPartnership has been formed to considerhow best industry should support the NHS intackling cancer; andCancer in a reformed NHS1.24 Cancer services now operate in a verydifferent environment from when the NHSCancer Plan was developed in 1999/2000:●A report on cancer was produced by a grouprepresenting independent sector providers.1.23 The Department of Health welcomes thesegoals and principles. Cancer Research UK’s 2020Goals are rightly challenging (see Box 4), but areachievable provided that further action is takennow by all partners involved in cancer. We willtherefore be informed by these goals andprinciples as we implement the Cancer ReformStrategy.●●NHS structures have changed and greaterauthority has been devolved to localorganisations, with over 90% of all NHSfunding being with PCT commissioners;Greater patient involvement is changing theway in which decisions about treatment aremade;Box 3: Cancer Campaigning Group Key Principles from ‘Getting it right for people withcancer: What the voluntary sector wants from the Cancer Reform Strategy’1. Continued national leadership is essential to tackle a disease that affects us all;2. Greater efforts should be made to prevent cancer and to raise awareness of the disease inorder to save and improve more lives and make best use of resources;3. Every person affected by cancer deserves high quality care, treatment, information andsupport, regardless of location, gender, ethnicity, age, financial status, literacy, religion,sexual orientation, disability or type of cancer;4. People with cancer and their carers should have the opportunity to be equal partners indecisions about their treatment and care;5. Cancer services should treat the person, not just the tumour, throughout the cancer journey;6. Policies should promote and support all aspects of cancer research, as the foundation forhigh quality cancer services; and7. Resources should be allocated to ensure those cancers where progress has been slower cancatch up with those where the most significant improvements have been delivered.

CHAPTER 1: THE CHALLENGE OF CANCER 27Box 4: Cancer Research UK 2020 GoalsCancer Research UK has developed ten goals to measure success over the coming years inbeating cancer. Cancer Research UK will work with partners to achieve the following by 2020:1. People will know how to reduce their risk of cancer – Three quarters of the UK publicwill be aware of the main lifestyle choices they can make to reduce their risk of gettingcancer;2. The number of smokers will fall dramatically – Four million fewer adults will besmokers, preventing thousands of new cases of cancer every year;3. People under 75 will be less likely to get cancer – The chances of a person developingcancer up to the age of 75 will fall from more than one in four to one in five;4. Cancer will be diagnosed earlier – Two-thirds of all cancer cases will be diagnosed at astage when the cancer can be successfully treated;5. We will understand how cancer starts and develops – We will have a detailedunderstanding of the causes and changes in the body in two-thirds of all cases of cancer;6. There will be better treatments with fewer side effects – Treatments that accuratelytarget the cancer and have few serious side effects will be available for at least half of allpatients;7. More people will survive cancer – Survival rates for all common cancers will increase,with more than two-thirds of newly-diagnosed patients living for at least five years;8. We will especially tackle cancer in low income communities – The differences in therisk of dying from cancer between the most affluent and the least affluent will be reducedby half;9. People with cancer will get the information they need – At least nine out of tenpatients will be able to access the information they need at the time of diagnosis and duringtreatment; and10. We will continue to fight cancer beyond 2020 – Sufficient scientists, doctors, nurses andinfrastructure will be in place to ensure continued rapid progress in the fight against cancerbeyond 2020.●●●Following record increases in investment inthe NHS, the rate of growth in spending isset to slow to a four percent real increase peryear, taking total expenditure on the NHS to£110 billion by 2010/11;There is a greater focus on delivering valuefor money through improving efficiencywithin the service and from new deliverymodels; andCancer has a higher public profile than everbefore and the improvements in cancer carehave rightly raised patient expectations stillfurther.1.25 The initial priority for cancer services in theNHS Cancer Plan was to increase capacitythrough investment in the workforce and infacilities. The first stages of reform were alsointroduced, driven in part through nationaltargets and commitments, for example onwaiting times and through centrally managedbudgets, such as for capital equipmentprogrammes and for specialist palliative care.1.26 National direction has come from:●Publishing the NHS Cancer Plan, the firstnational comprehensive plan for cancer,setting out the strategic direction for cancerservices across the country;

28 CANCER REFORM STRATEGY●The work of the National Cancer Director,with support from the Department of HealthCancer Policy Team, the Cancer Action Team,the Cancer Services CollaborativeImprovement Partnership and NHS CancerScreening Programmes, in championingservice quality and change;●●●Deliver better information to patients;Enhance training, such as for district nursesin to palliative care and for GPs in cancer;Improve planning of chemotherapy services;and●●●Developing evidence-based guidance tosupport local services;National measures against which all servicesare assessed through peer review; andCoordination of cancer research through theNCRI and the National Cancer ResearchNetwork (NCRN).1.27 Local implementation has been achievedthrough:●●●Cancer networks bringing together all the keylocal organisations – Primary Care Trusts, NHSTrusts and the voluntary sector – and individualssuch as clinicians, managers and service usersto plan and monitor service delivery;Establishing multidisciplinary teams (MDTs) tobring together the relevant expertise to helpplan care for individual patients;Focused service improvement resourcesinvested in service redesign at the frontline;and●Ensure the voice of patients is heard throughuser partnership groups in each cancernetwork.1.29 Looking forward, that mix of some nationaldirection, effective local implementation andworking in partnership remains the broadapproach needed to deliver further improvementsin cancer services. However, the Cancer ReformStrategy reflects the change in balance betweennational and local control in the NHS. Continuednational direction will be provided in certainareas, such as the successful standards for cancerwaiting times and the national cancer screeningprogrammes. However the overall focus of thestrategy is on enhancing local delivery, by givingadvice and support to commissioners andproviding incentives for the providers of NHS careat a local level to deliver high quality, costeffectivecare for cancer patients.1.30 A range of levers is now available toincentivise local service improvement. Theseinclude:●National guidance to inform local needs;●Local research networks with dedicatedfunding.1.28 Other stakeholders have also contributedvery significantly to progress on cancer.These have included cancer charities, thepharmaceutical industry and other governmentdepartments. Partnerships have beenestablished to:●●Promote research through the NationalCancer Research Institute and NationalCancer Research Network;Develop new models of service such as pilotsfor genetics services;●●●●●●●Information and research evidence;A stronger patient voice and more patientchoice;Stronger commissioning;Plurality of service provision;National tariffs;Standards and regulation; andNationally defined contracts for local servicearrangements determined by commissioners.

CHAPTER 1: THE CHALLENGE OF CANCER 291.31 Each of these levers will be employed todrive the multiple improvements in cancerservices set out in this Cancer Reform Strategy.Subsequent chapters show how the differentlevers will be applied to tackle differentchallenges.1.32 Significant further investment will beneeded to deliver the world class cancer serviceswe aim to achieve. Overall costs of cancer areset to rise with increasing incidence and moreeffective treatments. We need to invest more inprevention and early detection. But there is alsopotential to improve efficiency and therebyrelease resources, especially in relation toinpatient care. Chapter 10 sets out thesefunding issues in more detail.Cancer and the NHS Next StageReview1.33 A major review of the way the NHSdelivers patient care is underway ahead of its60th anniversary in 2008. Led by health ministerLord Darzi, the NHS Next Stage Review willidentify the way forward for a 21st century NHSwhich is clinically-driven, patient-centred andresponsive to local communities. 101.34 The current stage of the review hasbrought together clinicians from across thecountry to focus on eight clinical pathwaysrepresenting the various stages in a person’s lifewhere they may encounter health and socialcare. These are: maternity and newborn;children’s health; staying healthy; long termconditions; acute care; planned care; mentalhealth and end of life care.1.35 With the possible exception of maternityand newborn care, cancer is an important partof all of the clinical pathways being considered.Key findings and recommendations from theCancer Reform Strategy will feed into the workcurrently underway at both the national andStrategic Health Authority level as part of theNHS Next Stage Review. Whilerecommendations throughout the strategy caninform the review, the moves set out in chapter7 for delivering cancer services in the mostappropriate settings are most directly relevant.

Part 2:The next steps for cancer

33Chapter 2:Preventing cancerChapter Summary●●●●●●●Over half of all cancers are potentially preventable, with smoking being the single largestpreventable cause of death;The fall in smoking prevalence over the past decade is attributable in part to the introductionof a comprehensive tobacco strategy;The introduction of smokefree legislation should be seen as a launch pad for further action.The government will consult on further initiatives in Spring 2008;Obesity is now the most important preventable risk factor for cancer in non-smokers.A cross-government strategy to tackle cancer will be published shortly;The incidence of skin cancers is rising. The government will increase funding to raiseawareness of the dangers of over exposure to sunlight and is considering the need forregulation of the sunbed industry;Vaccination to prevent cervical cancer will start in 2008; andNew initiatives to strengthen research into prevention of cancer are underway.Introduction2.1 Over half of all cancers could be preventedif people adopted healthy lifestyles such as 11 :●●●●●●Stopping smoking;Avoiding obesity;Eating a healthy diet;Undertaking a moderate level of physicalactivity;Avoiding an excessive alcohol intake; andAvoiding excessive exposure to sunlight.2.2 Action to increase awareness of these riskfactors and encourage people to adopt healthylifestyles is therefore a crucial part of thegovernment’s strategy to tackle cancer.2.3 Vaccination now presents a furtheropportunity in cancer prevention, specifically forcervical cancer. As announced in October 2007,the government is introducing a nationalvaccination programme for young girls againstthe human papillomavirus. This will protectagainst the strains of the virus which causearound seven out of ten cases of cervical cancer.It is hoped that the vaccination programme willsave around 400 lives a year.Awareness of the risk factorsfor cancer2.4 Public awareness of the main preventablerisk factors for cancer is poor. A recent surveyundertaken by Cancer Research UK’s Reduce the

34 CANCER REFORM STRATEGYRisk campaign showed that only five percent ofthe population could, unprompted, name fourof the six lifestyle factors linked to cancer listedabove. Seventy seven percent were only able toname two or fewer of these factors.2.5 Awareness of risk factors for cancer isparticularly low in deprived groups. 122.6 We need to do more to raise publicawareness of the risk factors for cancer. CancerResearch UK is funding the development of amodular tool to assess levels of awareness ofcancer risk factors and symptoms. This tool willenable the monitoring of changes in awarenesslevels over time, which will help in evaluatingthe success of interventions designed to increaseawareness and encourage behaviour change.The tool is expected to be available in 2008.Role of Primary Care Trusts incancer prevention2.7 As set out in the Local Government and PublicInvolvement in Health Act (and the subsequentdraft statutory guidance ‘Creating strong, safe andprosperous communities’) Primary Care Trusts(PCTs) and local authorities will have a duty toundertake a Joint Strategic Needs Assessmentof the current and future health and social careneeds of their population. The Department ofHealth will shortly be issuing guidance on this duty.2.8 Joint Strategic Needs Assessment will leadto shared priorities for commissioning toimprove outcomes and reduce healthinequalities. These priorities will be used toinform the Sustainable Communities Strategyand targets within the Local Area Agreement.stroke, diabetes and chronic obstructivepulmonary disease. PCTs and local partners maytherefore wish to tackle these challengescollectively.2.11 There are a number of existing initiativeswhich present opportunities to improveawareness of the risk factors for cancer andencourage individual action to address them.These include the work of health trainers, theNHS Life Check programme and the informationprovided on the NHS Choices website.Tobacco and Cancer2.12 Smoking is the single largest preventablecause of death from cancer, accounting foraround one third of all cancer deaths and upto 90% of lung cancer cases.2.13 Differences in smoking rates between themost and least affluent groups in societyaccount for around half of the inequalities gapin cancer mortality between these groups.2.14 Much of the improvement in cancer deathrates over the past 20-30 years can beattributed to reductions in smoking amongstadults. Smoking prevalence amongst adults hascontinued to fall over the past decade. This hasbeen achieved in part due to the introduction ofa comprehensive anti-tobacco strategy. Recentlygovernment action has included:●●Action on smuggling and illicitly tradedtobacco;A comprehensive ban on tobaccoadvertising;2.9 Given the importance of cancerprevention, PCTs and cancer networksshould give high priority to increasingawareness of risk factors. They may wishto use the risk factor module of CancerResearch UK’s forthcoming assessment toolto define a baseline and assess progress.2.10 The lifestyle factors known to increase riskof cancer also, with the exception of excessiveexposure to sunlight, increase risk of otherconditions including coronary heart disease,●●●New hard-hitting picture warnings on alltobacco packaging from October 2008;Education and communications campaignson smoking run by the government(including those by health charities run inpartnership with the Department of Health);andFunding to ensure that local stop smokingservices can be provided by all PCTs inEngland.

CHAPTER 2: PREVENTING CANCER 352.15 The new smokefree law in England, whichhas been effective since 1 July 2007, has beendescribed as the single most important publichealth initiative for a generation. The newsmokefree law will provide protection foreveryone in virtually all enclosed workplaces andpublic places from the harmful effects of secondhand smoke.2.16 Second hand smoke is a serious healthhazard and there is no safe level of exposure.Scientific evidence shows that exposure tosecond hand smoke increases the risk of seriousmedical conditions such as lung cancer, heartdisease, asthma attacks and sudden infant deathsyndrome. While the law in England is still in itsearly days, we already know that:●●●Support for a Smokefree England is strong,with over three-quarters of people in supportof the new law. More smokers support thelaw than oppose it;Smokefree legislation is well respected withover 98% of smokefree premises andvehicles inspected by local authorities acrossEngland in August being properly compliant;andResearchers have found that, sincesmokefree legislation was introduced inScotland in March 2006, there has been adramatic improvement in air quality in pubs;no increase in smoking in the home andreduced tobacco consumption, particularly indisadvantaged communities.2.17 In October 2007, the age of purchase ofcigarettes was raised from 16 to 18. We believethat this increase in the age of sale for tobacco,with recently announced legislative proposals fortougher sanctions against retailers who breakthe law, will help to reduce the availability ofcigarettes to young people. It will also help tocommunicate the serious health risks associatedwith smoking and contribute to a furtherreduction in the numbers of young people whotake up smoking in the first place.2.18 However, the tobacco epidemic is not yetover. We must see the implementation ofsmokefree legislation as the launch pad to takefurther action to tackle smoking in this country.Tobacco control policy must remain a priority,both nationally and locally. Smoking ratesremain comparatively high in routine andmanual workers and in the north of Englandand smoking prevalence is particularly high insome very deprived groups. Eighteen percent ofmen and 16% of women in the professionaland managerial groups smoke compared with32% of men and 29% of women in routine andmanual groups (2005 figures).2.19 Around seven in ten smokers say theywant to quit smoking. Smokers who quit withthe support of the NHS are significantly morelikely to succeed than those who do not makeuse of NHS support. In the six years since 2000,the number of smokers who have used thesupport available from the NHS stop smokingservices has increased by over 350%. We willcontinue to make every effort to encouragesmokers to quit with the support of the NHSinto the future.2.20 The government runs highly effective stopsmoking campaigns to motivate and supportsmokers to stop and particularly to encouragethem to use NHS support when quitting, soincreasing their chances of doing so successfully.So far this year, over a million people haveresponded to the campaign via the NHSSmoking Helpline, www.gosmokefree.co.ukwebsite and interactive TV, to ask for support tostop smoking.2.21 The government is currently proposingnew prohibition orders for retailers who sell tounderage children. These new measuresadequately reflect the seriousness of sellingtobacco to underage children. Access tocigarettes by under 16 year olds has not been asdifficult as it should be – less than a quarter of11-15 year olds who have tried to buy cigarettesfrom small shops have found it difficult to do so.Those who repeatedly flout the law and selltobacco to children should not be allowed tocontinue to sell a harmful and addictive productsuch as tobacco.

36 CANCER REFORM STRATEGY2.22 Hard-hitting picture warnings will appearon all tobacco products produced for the UKmarket from 1 October 2008. There isconsiderable research that demonstrates thebenefits of introducing pictorial warnings fromcountries such as Canada and Australia wherethey have had picture warnings for some years.Smokers there are more likely to act on thewarnings that are on tobacco packs if they arein picture form.2.23 Further coordinated action ontobacco remains central to thegovernment’s strategy to tackle cancer andsmoking related diseases, to reduce healthinequality and to promote public health.During Spring 2008, the government willconsult on proposals for the next steps intobacco control and the further regulationof tobacco products, including the displayof tobacco at the point of sale, access totobacco from vending machines andpackaging.2.24 In addition, the government iscommitted to action in the following areasof tobacco control:●Taxation on tobacco products: Thegovernment recognises that the price oftobacco products is one of the mostimportant factors in determiningconsumption. The UK has the highestpriced cigarettes in the EU and thegovernment continues to follow a policyof using tax to maintain the high priceof tobacco at levels that will impact onsmoking prevalence;●●●Tackling the major problem of illicittobacco: A continuing increase in theavailability of cheaper, illegallysmuggled cigarettes and hand rollingtobacco would mean that many smokersare able to bypass higher prices,undermining the impact of price onsmoking prevalence rates and reducingthe value of tax increases in reducingsmoking prevalence. The governmentwill continue to work with stakeholdersto tackle the availability of illicit tobaccoin our communities. The government isalso committed to working withinternational partners to develop aglobal protocol on illicit tobacco, underthe Framework Convention on TobaccoControl;Reducing the harm to smokers whocannot quit: Smoking is powerfullyaddictive and is an extremely dangerousway to get nicotine. Cigarette smokecontains over 4,000 chemicals includingknown carcinogenic agents and smokingis positively associated with over 40diseases. While recognising that it iscrucial to continue to support smokers toquit smoking, the government willconsult with stakeholders on measuresto reduce the significant harm to healthcaused by smoking for those who areaddicted to nicotine and not able to quitaltogether; andSocial marketing initiatives: Thegovernment will continue to invest insocial marketing initiatives at thenational level to support people to stopsmoking, especially with the freesupport available from the NHS. Socialmarketing initiatives will be focusedtowards groups in our community withthe greatest smoking prevalence.

CHAPTER 2: PREVENTING CANCER 37Nicotine replacement therapy2.25 We want more people to quit smokingand to have as much support as possible to dothis easily. Many PCTs commission communitypharmacies to provide one to one NHS stopsmoking services, which have helped manypeople quit smoking.2.26 Our aim is to widen access to NicotineReplacement Therapy (NRT) products to supportsmokers to quit. By making NRT available onprescription, widen the license for NRT products,allowing NRT to be available for sale as aGeneral Sales List product as well as allowingqualified independent pharmacists and nurseprescribers to prescribe NRT, the governmenthas made significant achievements in this area.In addition, some PCTs have enabledpharmacists to supply NRT through voucherschemes or Patient Group Directions, tosupport and simplify access to NRT. We arekeen to see this practice adopted morewidely so that more smokers can quit,benefiting their overall health.Obesity, Diet and Physical Activity2.27 The evidence linking obesity to cancer hasbecome much stronger since the publication ofthe NHS Cancer Plan in 2000. 13 Being obeseincreases the risk of many cancers, especiallycancers of the uterus, kidney, colon, gallbladderand oesophagus. It is also linked to breastcancer in post-menopausal women.The Foresight report recommends whole societalchange with cross governmental action and thata long term commitment is required to tacklethe obesity epidemic. 142.30 Also in October 2007, the World CancerResearch Fund published a report, ‘Food,Nutrition, Physical Activity and the Prevention ofCancer: a Global Perspective’. 15 This provides acomprehensive scientific review of the evidenceand presents a set of policy and personalrecommendations for the prevention of cancer.Box 5 below gives a summary of the report’srecommendations.2.31 A further recent study has quantified thenumber of cases of cancer in women caused byobesity and overweight. 16 The Million WomenStudy, funded by Cancer Research UK, is thebiggest study ever undertaken to look at womenand cancer risk. Over one million UK womenwere studied during seven years. The study hasfound that among middle aged and olderwomen in the UK, around five percent of allcancers, or 6,000 cancers each year, are causedby being overweight or obese. Two thirds of theadditional 6,000 cancers each year due tooverweight or obesity are cancers of the wombor breast.2.32 The government has launched a numberof programmes, many of which aredemonstrating some success:2.28 For non-smokers, obesity is now the mostimportant preventable risk factor for cancer.Action to prevent obesity is therefore essentialto the Cancer Reform Strategy’s aim to preventmore cancers.2.29 In October 2007, the government’sForesight research programme published itsreport on obesity and its modelling suggeststhat 60% of men, 50% of women and about25% of all children under 16 could be obese by2050. The report argues that, although personalresponsibility plays a crucial part in weight gain,human biology is being overwhelmed by theeffects of today’s ‘obesogenic’ environment,with its abundance of energy-dense food,motorised transport and sedentary lifestyles.●●●●Tough new nutritional standards in schoolsare now in place;86% of school children now do at least twohours of quality school sport a week, beatingthe government target of 85% by 2008;We have worked with the Food StandardsAgency to introduce a traffic light system forfront-of-pack labelling on foods, making itsimpler for consumers to make healthierfood choices;We have, with the communications industryregulator OFCOM, placed restrictions onfood and drink advertising to children; and

38 CANCER REFORM STRATEGYBox 5: Recommendations for cancer prevention from the World Cancer Research Fundreport ‘Food, Nutrition, Physical Activity and the Prevention of Cancer: a GlobalPerspective’●●●●●●●●●●●●Be as lean as possible within the normal range of body weight;Be physically active as part of everyday life;Limit consumption of energy-dense foods;Avoid sugary drinks;Eat mostly foods of plant origin;Limit intake of red meat and avoid processed meat;Limit alcoholic drinks;Limit consumption of salt;Avoid mouldy cereals (grains) or pulses (legumes);Aim to meet nutritional needs through diet alone rather than through supplements;Breastfeed children; andCancer survivors are advised to follow the recommendations for cancer prevention.●The Department for Communities and LocalGovernment has a range of programmes thatsupport tackling obesity by aiming to createsafe, clean environments which encourageactivity and many local neighbourhoodrenewal projects are focusing on improvingaccess to healthy food.2.35 ‘Safe, Sensible, Social – Next Steps in theNational Alcohol Strategy’, launched on 5 June2007, aims to reduce the types of harm that areof most concern to the public (crime and illhealth)and increase the public’s awareness ofthe risks associated with excessive consumptionand how to get help. Overall, it aims to:2.33 The government has committed todeveloping a cross-government strategy totackle obesity. In October 2007 as part ofthe Comprehensive Spending Review a newcross-departmental child health PublicService Agreement was set out. The targetis to reduce the rate of increase in obesityin children under eleven years old, in thecontext of a long-term ambition to reduce,by 2020, the proportion of overweight andobese children to 2000 levels.Alcohol2.34 Excessive alcohol consumption is stronglylinked to an increased risk of several cancers,including mouth, larynx, oesophagus, liver andbreast. Combining excessive alcoholconsumption with smoking further increasescancer risk.●●●●Increase the number of people drinkingwithin sensible drinking guidelines;Reduce the number of men who are drinkingmore than 50 units a week and the numberof women who are drinking more than 35units or more than twice the sensible dailydrinking guidelines on a regular basis;Reduce the number of under-18s who drinkand the amount of alcohol they consume;andShape an environment that actively promotessensible drinking.

CHAPTER 2: PREVENTING CANCER 392.36 A programme of activity is planned fornext year and beyond to achieve this. It willinclude:●●●A sustained national communicationscampaign will aim to raise the public’sknowledge of units of alcohol andensure everyone has the informationthey need to estimate how much theydrink;Targeted information and advice forpeople who drink at harmful levels andtheir families and friends; andConsultation on the need for legislationregarding alcohol labelling.Excessive Ultraviolet Exposure2.37 Melanoma incidence is rising rapidly, suchthat it is one of the fastest growing types ofcancer, almost certainly reflecting patterns ofbehaviour over recent decades. Althoughmelanoma is more common in women thanmen, the death rate in men is higher at 2.7 per100,000 compared to 1.9 per 100,000 (agestandardised mortality rates).2.38 The SunSmart campaign is a nationalcampaign to promote behaviour change toprevent skin cancer and raise awareness of theearly signs of the disease. It is commissioned bythe UK Health Departments and run by CancerResearch UK.2.39 Given the importance of preventionand early detection of skin cancer, thegovernment is committed to increasingthe funding available for awarenessprogrammes.2.40 With incidence continuing to rise, furtheraction is needed to prevent skin cancer. Oneconcern is the use of cosmetic tanning salons(especially un-staffed salons), with the risks ofexcessive exposure by children and youngpeople and lack of adequate informationprovided to customers about the health risks ofusing sunbeds.2.41 The Sunbed Association, which representsaround a quarter of the tanning salon industry,requires members to have staffed premises andadhere to a code of practice which prohibits useby under 16 year olds and requires the provisionof information to their customers. In someareas, such as London and Birmingham, locallicensing laws require certain standards andrestrictions, but most of the country is notcovered by such laws.Box 6: The SunSmart CampaignSunSmart’s 2007 activities included:●●●●●●Providing tips to help holidaymakers avoid sunburn;Campaigning to raise awareness of the dangers of sunbeds;Providing information about skin cancer prevention for the public and professionals throughthe SunSmart website;Giving briefings to journalists to raise awareness of key skin cancer issues in the media;Supplying printed resources for professionals to use in local health promotion activities; andHelping schools to develop their own sun protection policies using SunSmart school policyguidelines.There is clear evidence of SunSmart’s successes to date. Since SunSmart’s launch in 2003, thecampaign has increased knowledge of the causes of skin cancer and the importance of earlydetection, increased awareness of actions that can be taken to prevent skin cancer, positivelyinfluenced attitudes to sun protection and promoted behaviour change among defined targetgroups.

40 CANCER REFORM STRATEGY2.42 Recently, both the World HealthOrganisation and the European Union haveexpressed their views that under 18 year oldsshould not use sunbeds.2.43 The Health and Safety Executive providesguidance on its website for controlling healthrisks from the use of UV tanning equipment.Since the publication of the guidance in themid-1990s there has been considerabletechnological change as well as an expansionin the sunbed industry. The Department ofHealth is reviewing options for regulationof the industry and as a first step willgather more information about the numberand distribution of sunbeds and the scale ofsunbed use by minors. It is important thatthe Department of Health and the Healthand Safety Executive, in consultation withother stakeholders including CancerResearch UK, consider ways in which abalance can be struck between consumersafety and choice.Vaccination and cancer2.44 Persistent infection with HumanPapillomaviruses (HPV), a sexually transmittedvirus that infects epithelial (skin) cells isnecessary for cervical cancer to develop.However, most women are infected with HPVat some point and 90% clear it naturally.Furthermore, it is only some of those womenwith persistent HPV who go on to developcervical disease. HPV infection is also associatedwith some other rarer anogenital cancers andcancers of the head and neck. Two HPV typesHPV 16 and HPV 18 cause more than 70% of allcervical cancer cases. Vaccines are available tohelp protect against these two HPV types. Toensure maximum benefit and protection fromthis vaccine it is necessary to administer it beforethe onset of sexual activity.2.45 In September 2008 an HPV immunisationprogramme will be introduced to routinelyvaccinate girls 12-13 years of age, with a catchupof girls up to age 18 years over the next twoyears starting in Autumn 2009. This decisionfollows the advice of the Joint Committee onVaccination and Immunisation (JCVI) whichcarried out a detailed review of evidencesurrounding HPV vaccination. JCVI is anindependent expert committee which advises onall immunisation issues to the Department ofHealth.Genetic predisposition and cancer2.46 A person’s risk of developing cancer ispartly dependent on the genes they haveinherited from their parents. A small proportionof common cancers is thought to be associatedwith faulty inherited genes. Those affected tendto develop cancer at a younger age than thegeneral population and may therefore be noteligible for routine national screeningprogrammes such as breast and bowelscreening, which focus on older age groups.This section sets out how we will improveservices for people with a strong family historyor a known genetic predisposition to cancer.Surveillance of women found to be at high riskof developing breast cancer is discussed below.2.47 The discovery of new genes and betterunderstanding of the role of known genesassociated with familial disposition, will in futureallow better and earlier identification of those atrisk of developing cancer through genetic tests.Research funders such as Cancer Research UKare making major investments in geneticepidemiology, with studies already funded inbreast, bowel, lung, prostate and ovariancancers.2.48 The NHS Cancer Plan acknowledged thatcancer genetic services were poorly developed.Patients were already seeking advice on whetherthey were at increased risk of developing cancerbecause of their family history, but primary careteams did not always have the information theyneeded to assess patients’ risks.2.49 In 2001, the Department began workingwith Macmillan Cancer Support to develop andpilot new services to assess genetic risk. Thepilots provided risk assessment, information andcounselling services in order to show thatestablishing dedicated family risk assessmentand support services, coordinated acrossprimary, secondary and tertiary care, can achieveseamless, effective and user-friendly services forthose worried about a familial risk of cancer.

CHAPTER 2: PREVENTING CANCER 412.50 Seven pilot sites were established as partof the programme, each testing different modelsof delivering a cancer genetics service. Althoughthe pilot sites operated their service in differentways for the benefit of their local populations,the core of each service consisted of thefollowing:●●●●Promotion of the service;Access to the service (self- or primary carereferral);Assessment of patients; andClassification of patients into high, moderateand general population risk, with clearpathways for each.2.51 The range of service models exploredincluded services targeted for specific ethnicminority populations, lower-socioeconomicgroups and rural communities. They alsoinvolved a range of health professionalsincluding primary care nurses, outreach geneticscounselling from the genetics specialist service,GPs with special interests and cancer specialistnurses.2.52 The pilots came to an end during 2007and are being evaluated by a team at theUniversity of Nottingham. If the pilots are shownto be effective, evidence based advice to theNHS will be developed on how best to set upand run familial genetics services. This advicewill be closely linked with the fullimplementation of the NICE Familial BreastCancer Guidance. Most of the pilot sites havealready been successful in securing futurefunding to continue their service from localcommissioners.2.53 We want people who are concernedabout their family history of cancer to haveaccess to cancer genetic services with highquality risk assessment and counsellingservices. Following evaluation, we willprovide guidance to commissioners on howto commission these services.2.54 The 2003 Genetics White Paperannounced an £18 million investment intechnology for NHS genetics laboratories toimprove the speed and accuracy of genetictesting.17 Now that the new equipment iscoming on stream, tests for cancer genes arebeing carried out more efficiently and mostpatients where the faulty gene in the family isknown are not having to wait so long beforeknowing their result. Innovations in technologywill make this testing even quicker and moreaccurate in future, but the complexity of thesetests and what they mean still needs theavailability of specialist genetic counsellors toprepare patients for testing and to explain theresults.Research in cancer prevention2.55 Several important initiatives are underwayto strengthen research in cancer prevention andbuild an evidence base to inform policy andsupport the implementation of effectiveinterventions to reduce cancer risk andencourage behaviour change.2.56 Following the publication of a report in2004, the National Cancer Research Institutebrought a consortium of research funderstogether to set up the National PreventionResearch Initiative (NPRI). The NPRI is a UK-wideinitiative made up of government bodies,research councils and major medical charitiesthat are working together to encourage andsupport research into chronic disease prevention,including cancer prevention. The NPRI is a multidisciplinaryinitiative, managed by the MedicalResearch Council, which recognises that diseaseprevention is a major research priority.2.57 NPRI funded studies are exploring a rangeof approaches to promoting positive healthbehaviour, to encourage people to avoid habitsthat increase their risk of cancer and to follow ahealthy diet and physical activity programme.Many are taking place in local settings – schools,neighbourhoods, homes, the workplace and GPsurgeries – with members of the communityhelping to develop and test new interventions.Some projects use the internet to influencehealth behaviour, develop partnerships withlocal food shops, train members of the

42 CANCER REFORM STRATEGYcommunity to be health advisors, or usemarketing communication skills to promotehealthier living.2.58 The initial budget of twelve million poundsfor NPRI will have been committed by early2008 after two rounds of funding. NPRI partnershave agreed to raise funds for a third andpossibly future rounds and a wider range ofparticipating organisations is anticipated.2.59 In response to the challenge ofstrengthening public health research andbuilding on the work of the NPRI, the majorfunders of public health research have cometogether under the auspices of the UK ClinicalResearch Collaboration (UKCRC) and establisheda Public Health Research Strategic PlanningGroup. The aim of the group is to develop acoordinated approach to improving the publichealth research environment and it hasidentified that the most effective framework forthis would be to fund a number of Public HealthResearch Centres of Excellence. Twenty millionpounds has been provided by a consortium offunders including the Department of Health toprovide infrastructure support to five suchcentres, which are likely to be operational in2008. This initiative is managed by the Economicand Social Research Council.

43Chapter 3:Diagnosing cancer earlierChapter Summary●●●●●●●●Late diagnosis has been a major factor contributing to poor cancer survival rates in the UK;The cervical screening programme will ensure that all women receive the results of theirscreening tests within two weeks by 2010;The age range for breast screening will be extended further to provide nine screening roundsbetween 47 and 73 years. Starting in 2008 this expansion will be completed by 2012.Direct digital mammography will be introduced over the same period;The NHS Bowel Screening programme will be extended from 2010 to invite men andwomen aged 70-75 years;The NHS Breast Screening programme will take responsibility for the management ofsurveillance for women at high familial risk of breast cancer;A new National Awareness and Early Diagnosis initiative will be established;Campaigns to raise awareness of the signs and symptoms of common cancers are beingpiloted in 20 deprived areas of the country; andA national audit in primary care of all patients newly diagnosed with cancer will beestablished.Introduction3.1 In general, the earlier a cancer can bediagnosed the greater the prospect of a cure.The later a cancer is diagnosed, the harder it isto treat and the poorer the patient’s chances ofsurvival. This is true for many cancers, includingbreast, colorectal, lung, ovary, oesophagusand stomach.3.2 Evidence suggests that later diagnosis ofcancer has been a major factor in the poorersurvival rates in the UK compared with someother countries in Europe. 18 Throughout thedevelopment of the Cancer Reform Strategy,experts and patients agreed that tackling latediagnosis is essential to improving outcomesfor cancer patients. One of the priorities ofthe strategy is therefore to diagnose morecancers early.3.3 To do this, we will:●●Extend and widen our existing screeningprogrammes and continue to investigateopportunities for new screening programmesfor other cancers;Raise public awareness of the signs andsymptoms of early cancer and encouragepeople to seek help earlier, especially amonggroups where this awareness is particularlylow; and

44 CANCER REFORM STRATEGY●Work with primary care professionals to ensurethat patients presenting with possible cancersymptoms are appropriately investigated orreferred to hospital without delay.Cancer screening3.4 Currently national cancer screeningprogrammes exist for breast, bowel and cervicalcancer. We remain committed to introducingnew screening programmes as and when theyare proven to be both clinically and costeffective.3.5 Cancer screening in England is alreadyhighly advanced in comparison with thatavailable in most countries and our programmesare renowned as being some of the best in theworld. We have high quality services and highlevels of coverage. We routinely commissionindependent evaluations of screening pilotprogrammes and technologies. Some of theachievements of our three cancer screeningprogrammes are set out below.3.6 However, we now want to go further,saving more lives by further enhancing andexpanding these programmes. The followingsections set out what this will mean in practice.Improving cervical screening3.7 Liquid based cytology (LBC) wasrecommended by the National Institute forHealth and Clinical Excellence (NICE) in 2003 asthe preferred technology for cervical screening.Box 7: Achievements in cervical screening● The NHS Cervical Screening Programme saves up to 4,500 lives in England every year 19 ;●●In 2006/07, 3.4 million women were screened and laboratories examined 3.7 millionsamples; andIn 2006/07, over 40,000 women had high grade abnormalities detected and treated throughthe programme.Box 8: Achievements in breast screening●●●The NHS Breast Screening Programme in England saves an estimated 1,400 lives per year.Screening now accounts for a third of all breast cancers detected; 20There has been a 62% increase in breast cancers detected through screening in the pastfive years;Over 13,500 cancers were detected in 2005/06, of which 41% were small cancers less than15mm which could not have been detected by hand; and● 1.63 million women were screened in 2005/06.Box 9: Achievements in bowel screening●●●●The NHS Bowel Cancer Screening Programme is one of the first national bowel cancerscreening programmes in the world;This is the first screening programme in England to invite men as well as women;The programme began in 2006 and full roll-out to all men and women aged 60 to 69 isexpected by December 2009; andWhen fully rolled out, around two million men and women will be screened and around3,000 cancers detected every year.

CHAPTER 3: DIAGNOSING CANCER EARLIER 45The main advantages of this new technique area quicker throughput in laboratories and a largereduction in the number of samples that cannotbe read. When fully implemented acrossEngland, this should mean that 300,000 womena year will not have to be re-tested due tounreadable samples, with all the anxiety thatentails. This will also reduce the workload inlaboratories.3.8 Implementation of a NICE appraisalnormally has to be funded by Primary CareTrusts (PCTs) within three months. At the time ofthe NICE appraisal of LBC, it was recognisedthat a major programme would be needed toretrain sample takers and laboratory staff whoanalyse the samples. A waiver was thereforeissued by the Department of Health, recognisingthat full implementation within three monthswas not possible. By November 2007, 88% oflaboratories in England had converted to LBC.The benefits of LBC are already becomingapparent. Of the four million tests taken eachyear, the number of inadequate tests fell from370,000 (9%) in 2004/05 to 173,000 (4.7%)in 2006/07. This means that around 200,000women did not have to attend for a repeat test,with all the anxiety that involves. All PCTs haveindicated that they will have introduced LBC byOctober 2008 in line with NICE/DH guidance.3.9 We now wish to see four furtherimprovements in the cervical screeningprogramme:●●Reducing the variation of coveragebetween PCTs;Minimising the time taken to get resultsback to women, aiming to informwomen of the result of their cervicalscreening test within two weeks of itbeing taken;●Action to tackle the falling participationof younger women aged 25 to 35.3.10 Nationally, 79.2% of eligible women werescreened at least once in the last five years.But participation in cervical screening variesgreatly across the country, from 86.5 % inNottinghamshire County PCT to 67.4% inHammersmith and Fulham PCT. Generally,participation is lower in spearhead PCTs thanelsewhere, but there are examples of spearheadPCTs with high participation rates, such asDoncaster at 82%. Participation can beimproved by engaging with potential users at acommunity level. To incentivise services toencourage higher coverage we will exploremoving to an activity based system forfunding screening services. NHS CancerScreening Programmes will also encouragethe sharing of best practice in improvingaccessibility of screening for all groups.3.11 In September 2007, the governmentannounced its intention to speed up the resultsof cervical screening, as set out in the manifestofor the 2005 general election. Women canexpect to receive the results for their cervicalscreening test within 14 days of it being taken.The implementation of Liquid Based Cytologywill go a long way to achieving this and we havealready seen the number of women waitingmore than six weeks for their results fall from44% in 2005/06 to 27% in 2006/07. But weneed to do more and further opportunities forimprovements have been identified by formaloptions appraisals:●●●Better use of Information Technology;More Advanced Biomedical ScientistPractitioners in Cervical Cytology;Posting results letters by first class mail;●Using new technologies, such as theautomation of cytology reporting andthe use of Human Papilloma Virus (HPV)testing as and when the researchevidence supports this; and●●Reconfiguring laboratories to make themlarger and more efficient; andLarger call/recall offices would also reduceturnaround times and allow better facilitiesto improve coverage such as telephone helplines.

46 CANCER REFORM STRATEGY3.12 Local cervical screening services canachieve a two week turnaround time forresults by adopting these measures. Theseturnaround times should be monitoredlocally and commissioners should interveneif the two week turnaround time is notbeing met. Turnaround times will also bemonitored nationally via the Office forNational Statistics / NHS Information Centreannual cervical screening statistical bulletin.The computer system will be amended tomeasure date of dispatch of the resultsletter and expected date of delivery.3.13 Achieving two weeks from sampletaking to the woman having her result willbe a challenge for many parts of thecountry. It will involve all partners in thescreening pathway, not just laboratories orTrusts. Local screening policies andarrangements may need fundamentalchange. The Cancer Services CollaborativeImprovement Partnership will offer focusedservice improvement resources across thecervical screening pathway to support thedelivery of faster turnaround times.3.14 Advice to the NHS on achieving thetwo week turnaround time standard will beissued in early 2008. All women shouldreceive the results of their cervicalscreening tests within two weeks by 2010.3.15 New technologies also have a part to playin modernising the cervical screeningprogramme. Current research studies arelooking at the use of automated cytologyreporting, which will further improve turnaroundtimes and put less strain on pathology staff andat the use of Human Papilloma Virus (HPV)testing as a primary screening tool. HPV testingas triage (sorting) for women with mild orborderline test results has also been piloted.Women with a mild or bordeline screening resultwere tested for HPV and if HPV negative theywere returned to the routine screeningprogramme. Women who were HPV positivewere referred to colposcopy. Following the initialtrial, a number of sentinel sites will now beginHPV testing as triage. Results from these siteswill be known by 2009 at which point furtherroll out can be considered.3.16 The NHS Cervical Screening Programme islikely to continue for many years after theintroduction of the HPV vaccine. This is becausethe vaccines do not offer protection against allcancer causing HPV types and it will be a decadebefore the first girls vaccinated will be eligiblefor cervical screening. Screening will also stillneed to be offered to women up to the age of65 who may have already been exposed to thevirus. The Department of Health is consideringcommissioning further research to look at theimplications for the screening programme.3.17 In order to tackle the fall in coverageamong younger women, NHS Cancer ScreeningProgrammes have commissioned theImprovement Foundation to undertake work ata local level targeting this group. The lessonslearned from this work, due in 2009, will beshared with SHAs and local screeningprogrammes to develop best practice. The NHSCancer Screening Programmes’ press office isdeveloping an information pack to be issued toall local screening programmes and alsodeveloping a public relations strategy, includingarticles in appropriate media publications,posters etc. In addition, Cancer Research UKhave commissioned research on this issue, whichwe will monitor closely and will share thefindings. Continued local action in this area isalso essential and we will continue to monitorlevels of cervical screening coverage through theONS/Information Centre annual CervicalScreening Statistical Bulletin.Improving breast screening3.18 Until 2000 routine invitations for breastscreening were sent to women aged 50-64.Since then, the NHS Breast ScreeningProgramme (NHSBSP) has been extended toincrease the upper age to 70 and to includetwo-view mammography at each visit. As aresult, the number of women attending formammography has increased from 1.3 million in2000/01 to 1.63 million in 2005/06 and thenumber of cancers detected has risen from8,345 in 2000/01 to 13,523 in 2005/06. Thetwo changes together resulted in a 40 percent

CHAPTER 3: DIAGNOSING CANCER EARLIER 47increase in the workload of the programme,which has only been possible because of newworking practices and the dedication ofscreening staff (see chapter 11).3.19 Our first priority is to maintain this excellentrecord. To do this it is essential that the intervalbetween screens (the round length) ismaintained at three years. PCTs will need toinvest more in breast screening to ensurea three year round length because ofincreasing numbers of women from the‘baby boomer’ generation becoming eligiblefor breast screening. The National CancerDirector wrote to SHA Chief Executives inFebruary 2007 alerting them to these challenges.3.20 We now want to extend the programmeso that more women benefit and save evenmore lives. At present, women are invited forscreening seven times at three yearly intervalsbetween 50 and 70 years. Over time, thiswill be extended to nine screening roundsbetween 47 and 73 years with a guaranteethat women will have their first screeningbefore the age of 50. Over 400,000 morewomen will be screened each year as a result.Women over the eligible age range will be ableto self refer for screening every three years, asat present.3.21 This extension of the breast screeningprogramme will start from April 2008 andwill be managed by NHS Cancer ScreeningProgrammes in partnership with local healthservices. As with the previous extension(involving women 65 to 70 years) this willtake several years to implement fully, asmore staff will need to be recruited andtrained and more equipment purchased.The necessary phasing in of this expansionwill be carefully considered to ensure thatthe most useful epidemiological data can begathered to inform future decisions aboutthe programme. Full implementation isexpected by the end of 2012.3.22 An ICM poll commissioned byBreakthrough Breast Cancer in August 2007revealed that 88% of women over 70 had nothad any conversation with their GP about beingable to self-refer for screening every three years.A leaflet, developed in partnership with AgeConcern and reminder cards, are available forwomen at their final invited screeningappointment. Commissioners will wish to ensurethat this information is routinely provided bytheir local screening service.3.23 Breast screening mammography is the lastarea of imaging in the NHS where film is stillroutinely used. There are several benefits tomoving to digital mammography. It would allowthe image to be manipulated so it improves theradiologist’s ability to interpret breast tissue.Digital images could be exchanged electronicallybetween radiologists at different hospitals todiscuss difficult cases. Direct digitalmammography has been shown to be moresensitive and specific for pre-menopausalwomen who have denser breasts. Finally, it alsoprovides revenue savings in terms of reducedradiographer time and less chemicals or filmhandling and printing.3.24 Breast screening units should workwith the NHSBSP to develop business casesfor digital mammography. PCTs will need togive high priority to full implementation,with all units having at least one full-fielddigital mammography set by 2010. Allwomen under 50 routinely screened shouldhave Direct Digital available for assessment visitsby 2010.3.25 We also want to do more for women athigh risk of breast cancer. There are womenbelow the screening age who need regularsurveillance because of a family history of breastcancer or other genetic conditions predisposingto cancer or previous radiotherapy exposure fortreatment for Hodgkin’s Disease which putsthem at higher risk of developing breast cancer.3.26 Currently the surveillance of allwomen identified as being at high risk ismanaged at a local level to varyingprotocols. The NHSBSP offers theopportunity to manage such surveillance tonational standards, ensuring women receivea consistent and high quality service. TheNHSBSP will take on this surveillance, which

48 CANCER REFORM STRATEGYwill include access to MRI scanning asstated in the NICE partial update of theFamilial Breast Cancer Guideline (October2006). It is expected that this new systemwill be in place from 2009.3.27 There is also a need to ensure that healthinequalities are tackled with targetedprogrammes that increase the uptake ofscreening in poor communities and in BMEcommunities. Commissioners in PCTs withlow coverage levels will wish to developthese programmes.Improving bowel screening3.28 Rollout of the NHS Bowel CancerScreening Programme started in 2006. Thisprogramme is aimed initially at men and womenaged 60-69, as this is the age group for whomthe benefits of screening are expected to belargest. Test kits will be sent to participants everytwo years.3.29 The programme is being coordinatedthrough five regional hubs based on the fiveConnecting for Health clusters: Midlands & theNorth West (located in Rugby), North East andYorkshire (Gateshead), Eastern (Nottingham),Southern (Guildford) and London (Harrow).These hubs are responsible for the call and recallsystems and for sending the test kits to people’shomes. They also receive and process thecompleted test kits. People who are givenpositive test results are then booked in to localscreening centres that are responsible fordiscussing the results with the patient and forundertaking colonoscopies.3.30 Fifteen local screening centres wereestablished in the first wave (2006-07) with afurther 20 centres expected to come on streamin Wave 2. As at the end of October 2007, over574,000 kits had been sent out and over305,000 kits returned. Over 10,000 men andwomen aged 70 or over had self-referred forscreening. Just under 5,500 men and womenhad positive test results and were referred totheir local screening centre for furtherassessment. Over 3,500 colonoscopies had beenundertaken, with over 1,600 polypectomies andover 400 cancers detected. Full rollout to peopleaged 60-69 is expected by December 2009.3.31 As announced in September 2007, theNHS Bowel Cancer Screening Programmewill be extended from 2010 to invite menand women aged 70 to 75 to take part.As a result, around one million more men andwomen will be screened each year. Research andpilot evidence shows this is feasible and effectiveand 61% of bowel cancers occur in those aged70 and over. 21 Men and women aged 75 andover will be able to request a kit to be testedevery two years.3.32 This extension will be managed by NHSCancer Screening Programmes in partnershipwith local health services. In 2008/09, we willpilot the extension in five sites. This willenable us to learn lessons to inform the fullrollout of the extension from 2010.3.33 By the end of 2010, decisions will betaken about possible roll out to people intheir 50s. Depending on forthcoming researchfindings, a possible extension of the screeningprogramme to people in their 50s could eitherbe through the introduction of flexiblesigmoidoscopy or by extending faecal occultblood testing (FOBT).3.34 We will continue to monitor researchevidence on other new technologies closely,such as immunological FOBT and CT colographyand will take the opportunity presented by thenational screening programme to pilot newapproaches.Screening for other cancers3.35 The cancer research community iscommitted to investigating screeningapproaches in other cancers, particularly in themost common forms of cancer where a nationalscreening programme is most likely to be costeffective. Research is also underway intobiomarkers of early cancers where patients oftenhave no symptoms until the cancer has reacheda very late stage, such as pancreatic cancer.We will continue to support and monitor thisresearch and evaluate the potential for theintroduction of new screening technologies as

CHAPTER 3: DIAGNOSING CANCER EARLIER 49the evidence develops, working closely with theUK National Screening Committee.Screening for lung cancer3.36 There is an increasing weight of evidencein support of introducing a trial for thescreening of lung cancer. The Department ofHealth is leading work on behalf of the NationalCancer Research Institute (NCRI) to commissionresearch on the feasibility of a UK trial of CTscreening for lung cancer. The National Institutefor Health Research (NIHR) Health TechnologyAssessment programme has issued acommissioning brief, taking full account of thetrials already underway in the US and Europe,with a view to funding feasibility studies as soonas possible. If there is progression to anexploratory trial and then a full randomisedcontrolled trial, these will take a number ofyears to complete and will require consortiumfunding which will be brokered through NCRI.Screening for prostate cancer3.37 There is currently insufficient evidence toshow that screening based on existingtechnology would reduce deaths from prostatecancer. The efficacy of the Prostate SpecificAntigen (PSA) test for the screening or earlydiagnosis of prostate cancer remainscontroversial. Many cancers detected initiallythrough the PSA test would have caused noproblems during a man’s natural life span.In addition, there is no consensus amongstclinicians on the best form of treatment forlocalised prostate cancer, be that surgery,radiotherapy or active monitoring. TheDepartment of Health through its NIHR HealthTechnology Assessment programme is funding atrial of surgery versus radiotherapy versus activemonitoring for PSA-detected localised prostatecancer at a cost of over £30m (the ProtecT trial).Associated research in partnership with CancerResearch UK is examining the impact of PSAtesting. Results from major trials are expected inthe next three to five years and the UK NationalScreening Committee keep prostate cancerscreening closely under review.3.38 The Prostate Cancer Risk ManagementProgramme (PCRMP) was introduced in 2002 tohelp GPs and practice nurses in advising menwithout symptoms of prostate cancer on theimplications of having a PSA test. This empowersmen to make an informed choice on whether ornot to have a test based on their own lifestylesand values. An evaluation of the PCRMP wasfunded by the Department of Health to helpinform the future direction of the programmeand the PCRMP pack is currently being reviewed.A consultation will be published in the spring,with the intention of launching the revisedPCRMP packs in the summer of 2008. Thereview will take full account of the results of theProstate Cancer in Ethnic Subgroups (PROCESS)study 22 , which showed that black men are threetimes more likely to develop prostate cancercompared to white men.3.39 The Department of Health is supportingthe development of screening technology forprostate cancer by having a comprehensiveresearch strategy into all aspects of prostatecancer. We are jointly with other NationalCancer Research Institute (NCRI) membersfunding two NCRI Prostate Cancer ResearchCollaboratives and the Department of Healthfunded half of the original cost of £7.4 million.Following a review of progress by aninternational expert panel the Department ofHealth, Cancer Research UK and the MedicalResearch Council have agreed to provide afurther three years funding of £3.9 million.Screening for ovarian cancer3.40 In ovarian cancer, the Medical ResearchCouncil, Cancer Research UK and theDepartment of Health are funding the UKCollaborative Trial of Ovarian Cancer Screening(UKCTOCS), which began in 2000 and involves200,000 post-menopausal women aged 50 to74 across twelve UK centres. The trial isassessing the effectiveness of two possiblemethods of ovarian cancer screening, an annualCA125 test (a blood test for a cancer antigen)and an annual trans-vaginal ultrasound. Fullresults are not expected before 2012.New developments in screening3.41 Working with the UK National ScreeningCommittee, we will continue to monitor andassess research evidence for the effectiveness ofscreening for these and other cancers such as

50 CANCER REFORM STRATEGYoral cancer and skin cancer, following the adviceof the vision groups on these cancers. We willalso monitor the emergence of potential newdiagnostic markers as possible screeningtechnologies of the future. High qualityproposals for further research into biomarkerswill be encouraged.Raising public awareness ofcancer symptoms andencouraging people to seekhelp early3.42 While enhancing the screeningprogrammes will aid earlier diagnosis, this is onlypart of the action needed. We need to do moreto raise public awareness of the signs andsymptoms of early cancer and encourage peopleto seek help sooner.3.43 Reviews and original researchcommissioned by the Department of Health andothers have identified several factors which areassociated with longer delay by patients inseeking help. These include:●●●●●Failing to recognise that symptoms wereserious or could be due to cancer;Social deprivation;Older age (especially for breast cancer);Atypical presentations; andBlack and minority ethnic groups (forexample, with mouth cancer).3.44 While some good work to raise cancersymptom awareness and encourage earlypresentation is already underway, we needto do more to provide coordinated supportto local health services to deliver effectiveinterventions. We will therefore establish anew National Awareness and EarlyDiagnosis Initiative. Led by the NationalCancer Director, this initiative will bringtogether the NHS, representatives of LocalAuthorities, the Department of Health, theNCRI and the research community, cancercharities and patients to coordinate aprogramme of activity to support localinterventions to increase cancer symptomawareness and encourage earlierpresentation. This activity will include:●●●Developing measurement tools forsymptom awareness;Developing and testing newinterventions to raise awareness; andSupporting the rollout and evaluation oflocal pilots of validated interventionsand disseminating information aboutbest practice.Measuring symptom awareness3.45 Much of the existing information availableon levels of cancer symptom awareness ispiecemeal and tends to provide snapshots ratherthan an in-depth insight into nationwide levelsof awareness and help-seeking behaviour.3.46 We therefore need to establish the level ofknowledge of cancer symptoms in the generalpopulation and track what interventions have animpact on this. As discussed in chapter 2,Cancer Research UK is developing amodular assessment tool to assess levelsof awareness of cancer risk factors andsymptoms. This will enable change overtime to be monitored and the impact ofinterventions to be evaluated.3.47 Once the tool has been developed andvalidated, the Department of Health willuse the tool to conduct regular nationalsurveys of cancer symptom awareness.PCTs and Cancer Networks can then use thisinformation to benchmark their performanceagainst the national picture.3.48 Given the evidence that late diagnosisis a particular problem in this country 23 andespecially amongst deprived and BMEgroups, PCTs should give appropriatepriority to local initiatives to promote earlypresentation by people with symptoms ofpossible cancer and will wish to monitortheir progress in this area. To do this, theywill be able to use the symptom awarenessassessment tool at a local level to assess

CHAPTER 3: DIAGNOSING CANCER EARLIER 51changes in levels of symptom awarenessand late presentation. Where they findevidence of low awareness and of latepresentation, good PCTs and LocalAuthorities will take action to remedy this.Programmes to raise symptomawareness and change behaviour3.49 The research base on interventions whichpromote awareness of cancer symptoms andencourage behaviour change in relation tocancer is very small. Very few robust studieshave been undertaken to assess theeffectiveness of interventions. 24 An updatedsystematic review has recently beencommissioned by Cancer Research UK.3.50 However, there are several notable examplesof awareness campaigns and pilot programmes toencourage help-seeking behaviour:●●●●The Open Up to Mouth Cancer campaign,run by Cancer Research UK and supportedby the Department of Health, targeted at-riskgroups with information about mouth cancerrisk factors and symptoms;A pilot programme in Coventry funded bythe Department of Health and signatories tothe Prostate Cancer Charter for Action aimedto raise awareness of the prostate and itsfunction, including among Afro-Caribbeanmen, using community health promotiontechniques in pubs, clubs and workplaces;Psychosocial researchers have investigatedthe reasons for delayed presentation inwomen with symptomatic breast cancer andare conducting pilot work to develop anintervention to promote earlier presentationin women over 70 years 25 ;The Breakthrough Breast Cancer ‘TLC: TouchLook Check’ campaign run with Marks andSpencer provided 50 million opportunities forwomen to receive a message on breastawareness during October 2007. A pilotprogramme in Camden funded by theDepartment of Health and BreakthroughBreast Cancer aims to increase awareness ofbreast cancer screening;●●The SunSmart campaign, discussed inchapter 2, also works to raise awareness notonly of how to prevent skin cancer, but alsohow to notice the early symptoms; andThe ‘Don’t Be a Cancer Chancer’ symptomawareness campaign run by the ManchesterVersus Cancer Alliance is using strikingcampaign messages in places such assupermarkets, pubs and bingo halls aroundGreater Manchester, encouraging people togo to their GP if they are worried about anypossible symptoms.3.51 It is also important that symptomawareness campaigns as far as possible adoptstandardised messages based on the bestavailable evidence. The Department of Healthhas worked with health professionals, patientgroups and the voluntary sector to develop suchstandardised messages for prostate, bowel andlung cancer. We will now work through theNational Awareness and Early DiagnosisInitiative to develop equivalent messagesfor other cancers. We expect thesemessages to be developed over the courseof 2008/09. These messages will be used inall relevant Department of Health fundedinformation sources, including NHS Choices.3.52 Although the evidence to support differentinterventions is limited, there is a growingbehavioural science literature which points tostrategies that are effective in changing people’sbehaviour. There is also evidence to suggest thatadopting a health related social marketingapproach is improving people’s health andreducing inequalities. Social marketing is thesystematic application of marketing conceptsand techniques to achieve specific behaviouralgoals relevant to a social good. It uses a rangeof commercial sector marketing techniques andputs a detailed knowledge of consumerbehaviour at the heart of the development ofbehaviour change interventions, campaigns orprogrammes.

52 CANCER REFORM STRATEGYBox 10: Spreading key messages on cancer within a communityTeams of local people in North East Lincolnshire are supported by clinicians and otherprofessionals to use local knowledge to understand, target and engage communities in earlierpresentation of cancer symptoms.Early on, an ‘Experts on the Ground’ event brought people together to prioritise tumour sitesand identify networks. Messages have been spread across buses and local media, insupermarkets, social clubs, pubs, community fetes, libraries, General Practice and across a rangeof community networks. The local fire service agreed to support messages targeting men usingpictures of a fireman. Raising awareness is supported by deliberate links into local services. Men’shealth MOTs at a local drop in are being used to raise awareness of prostate cancer. The ‘Don’tSit on It’ campaign raises awareness of bowel cancer by targeting groups at bingos andcommunity groups using bingo dabbers and beer mats.Now half way through the programme, over forty local people are involved as volunteers. Newresources have been produced and several hundred people reached across scores of communityevents. After being shown the fireman’s publicity, local man John recognised symptoms andwent to his GP. Early stage prostate cancer was diagnosed. He said, “A family friend showed mesome of the posters and I immediately recognised symptoms I had been having. Without itthings might have been a lot worse”.3.53 The Department of Health is investingin a campaign that uses social marketingtechniques to raise awareness of the signsand symptoms of breast, lung and bowelcancers and to encourage people who thinkthey might have cancer to seek help earlier.The Improvement Foundation HealthyCommunities Collaborative is working in 20of the most deprived areas in the countryto target those most at risk and is workingwith local people to develop and testmethods of awareness raising. Full findingsfrom the pilots will be available in 2009/10.3.54 For pilot projects and campaigns suchas these to be of maximum value, it isessential that they are properly evaluatedand their findings disseminated. TheNational Awareness and Early DiagnosisInitiative, working with the NCRI, willtherefore support high quality evaluationsof pilot projects, promote the findings ofthese evaluations to encouragebest practice and encourage more researchin this field.3.55 We will also pilot innovativeapproaches to raising awareness about thesigns and symptoms of cancer, as well asprevention, by working with the FootballFoundation, the UK’s largest sports charity.The Football Foundation has already beensuccessful in using the reach and appeal offootball to engage with marginalisedgroups, helping deliver improved outcomeson a number of different social issues.We now believe it can help do the same forcancer and we intend to test and evaluatethis approach. Details of this pilot will beannounced in the New Year.

CHAPTER 3: DIAGNOSING CANCER EARLIER 53Box 11: Using health trainers to identify potential cancer symptomsAs part of the Improvement Foundation's Healthy Communities Collaborative, Health Trainers inHalton incorporated a new question into their interventions with individuals. The intention wasto allow people to share any unexplained physical symptoms that might need furtherinvestigation. The Health Trainers operate from Halton’s Healthy Living Programme which is apart of Halton and St. Helens PCT.The new question they asked was:“Have you noticed any unusual physical changes which have not been explained or investigatedby a healthcare professional?”Between the end of July and September 2007, 24 people were asked this question. Nineanswered 'yes' to the question and were advised to follow this up with their GP or practicenurse. Tracking by the Health Trainers revealed that two people have no specific health problemsrequiring treatment, three people have a non-malignant disease and two were diagnosed withcancer. The results for the remaining two people were not recorded as they did not presentthemselves to their local surgery.By including this simple question, advising presentation to a GP and following up the individuals,five people were found to have illnesses which might not otherwise have been diagnosed early.The impact of this therefore goes beyond cancer diagnoses and has the advantage of not havingto mention the word cancer to the individual.Halton and St. Helens PCT will now be using the question more widely, to see if it will pick upmore patients who would not normally seek advice about their symptoms. This pathway enablesnon-clinical staff to support people around their physical concerns.From January 2008 other lifestyle interventions in Halton will include the question about unusualsymptoms. The question is now included in the exercise on prescription questionnaire, of peopleenrolling in smoking cessation groups, the healthy ageing questionnaire for over 50s, a newmen’s health project and is to be used by Health Trainers in St. Helens also.This will increase the coverage across the patch to include 90,000 people in the most deprivedgroups.Working with primary careprofessionals to diagnosecancer earlier3.56 Primary care professionals have essentialroles at all stages of the cancer care pathway.One of the most important is in the diagnosis ofcancer.3.57 A GP with a list size of 1,800 patients canexpect to see only eight or nine new patientswith cancer each year and there many differenttypes of cancer. The GP will also see hundreds ofpatients with signs or symptoms which couldpossibly be due to cancer, such as lumps, weightloss, bowel symptoms, coughs andbreathlessness and difficultly swallowing.Typically, a GP will see one new case each ofbreast, lung, prostate and colorectal cancer eachyear, one case of less common cancers such asovary or pancreas every five or six years andsome rarer cancers such as testicular cancerabout once every 20 years. While the number ofcancers detected through screening isincreasing, the vast majority of cancer patientspresent first to a GP.3.58 In 2005, NICE published updated guidancefor GPs and primary healthcare professionals forwhen a patient should be urgently referred to aspecialist for investigation of suspected cancer.

54 CANCER REFORM STRATEGYBox 12: Young people and cancerIn March 2007, Teenage Cancer Trust held its annual ‘Find Your Sense of Tumour’ conference forteenagers and young people with cancer, where they discussed their experiences of beingdiagnosed with cancer. Of the 360 teenagers and young people surveyed at the conference,47% had visited their GP with symptoms four or more times before being referred to aspecialist.The survey question: How many times did you visit your GP with symptoms before you werereferred to a specialist?Answer: Once – 26%; two to three times – 27%; four to five times – 13%; and more than fivetimes – 34%3.59 However, several of the groups convenedto inform the development of the CancerReform Strategy felt that more should be doneto support primary care professionals in spottingpotential cancer symptoms, accessing theappropriate diagnostic tests and making referralsto secondary care quickly when necessary. Thereis scope to go beyond checklists of the mostsignificant symptoms to more sophisticateddecision making tools which assess individualpatients’ risk of having, or getting, a specificcancer. NCRI will be exploring what researchis needed in this area.Improving access to diagnostics3.60 Improving access to diagnostics is thesingle most important priority in primary care toimprove the early diagnosis of cancer. Greateraccess is needed both to diagnostic tests forinitial investigations, mainly to exclude cancerand to specialist diagnostic services for patientswith a high chance of having cancer. GPs,working to agreed protocols, need to be able tosend patients for initial investigations such asMRI and CT scans, endoscopies and X-rays ifthey are concerned that cancer may be apossible diagnosis. This issue also forms animportant component of the NHS Next StageReview. Chapter 7 sets out some of the ways inwhich access to diagnostic services could beimproved and diagnostic capacity increased.National audit in primary care ofnewly-diagnosed cancers3.61 Missed diagnosis of cancer has beenidentified as an important issue by theNational Patient Safety Agency (NPSA).We now need to understand more aboutthe nature and extent of delays in cancerdiagnosis. Many GPs are alreadyundertaking ‘significant event reviews’regarding the diagnosis of cancer. We wishto build on this to establish a NationalAudit in primary care of all patients newlydiagnosed with cancer. The audit will beundertaken in collaboration with the RoyalCollege of General Practitioners (RCGP)and the NPSA.3.62 The RCGP and NPSA will be asked toconsider and develop the best auditmethodology. This audit will need to look ataspects such as:●●●The number of visits to primary care withrelevant symptoms before referral to hospital(delay pattern analysis);The interval from first attendance to referralor definitive diagnostic test; andExamining clinical practice against criteria forreferral and prioritisation.

CHAPTER 3: DIAGNOSING CANCER EARLIER 553.63 Findings from the national audit will thenbe used to make decisions about how best toprovide more support to primary careprofessionals to ensure early diagnosis of cancer.We will discuss with the RCGP how lessons fromthe audit could inform the education andtraining of GPs, including through continuousprofessional development and appraisal. Theaudit could also assist in the development ofdecision aids to support healthcare professionalsin assessing symptoms and making decisionsabout further investigation or referral.Working with other primary careprofessionals3.64 Although GPs may play the key role inhelping diagnose cancer, other primary careprofessionals can also play an important role.For example, the role that pharmacists haveplayed in helping promote awareness of thesigns and symptoms of lung cancer and inencouraging people with a persistent cough tovisit their GP, provides an excellent example ofthe enhanced contribution that can be made.Social workers may also play an expanded rolein helping identify potential cancer symptomsamongst at risk groups, such as older people orthe disabled. We will therefore involveprofessionals such as pharmacists and socialworkers as we develop the NationalAwareness and Early Diagnosis Initiative.

56Chapter 4:Ensuring better treatmentChapter Summary●More patients will benefit from the 14 day, 31 day and 62 day targets for cancer;● Improving outcomes guidance will be fully implemented by 2010/11;●●●●●The use of laparoscopic (keyhole) surgery for colorectal cancer will be enhanced through anational training programme and through patient choice;Major investments in staff and facilities will deliver world class radiotherapy services;The Department of Health will continue to work with NICE to ensure that all appropriatecancer treatments are appraised and that gaps between licensing and publication ofguidance are minimised;Commissioners and providers should give high priority to safety issues related toradiotherapy and chemotherapy; andFurther new developments in cancer treatment are anticipated over the next five years.Introduction4.1 Treatment for cancer has improvedconsiderably over the past decade. In addition,around 1,500 multidisciplinary teams for cancerare improving the delivery of treatment and carefor patients. We have seen a major increase inthe use of effective new treatments approved byNational Institute for Health and ClinicalExcellence (NICE) and major reductions havebeen achieved in waiting times.4.2 To build on this progress and ensure bettertreatment for cancer we will:●●Go further on cancer waits to ensurepatients no longer have to experienceunnecessary delays for any treatment theymay need;Ensure that reconfigurations are completedin line with improving outcomes guidance;●●●●●Continue to improve the quality of cancersurgery and expand training in laparoscopic(keyhole) techniques and other surgicalinnovations;Encourage urgent expansion of local capacityin radiotherapy so that it can meet growingdemand;Speed up the process of appraising newcancer drugs and monitor chemotherapyusage more closely;Encourage the speedy introduction of newinnovations in cancer treatment into NHSpractice; andEnsure better quality information is collectedto drive up quality of treatment and improveoutcomes for patients (see chapter 8).

CHAPTER 4: ENSURING BETTER TREATMENT 574.3 This chapter sets out the actions which willbe taken to ensure delivery of better treatment.Chapter 7 sets out how treatment and care canbe delivered in the most appropriate settings.4.8 Following this work and based onadvice from key stakeholders, we will nowextend the range of patients who benefitfrom the current standards:Going further on cancer waits4.4 Excellent progress has been made on thecurrent waiting time targets, with achievementat a national level as follows:●●●two week standard (urgent GP referral tofirst hospital assessment): >99%;31 day standard (from diagnosis/decision totreat to first treatment): >99%; and62 day standard (from urgent GP referral tofirst treatment): >96%.4.5 This progress has been achieved as a resultof concerted effort and coordination acrossprimary and secondary care. In 2006/07, over630,000 people were seen under the two weekstandard, over 200,000 under the 31 daystandard and over 80,000 under the 62 daystandard, with less anxiety caused by waitingand greater chance of successful treatment ifthey are found to have cancer.4.6 However, the current standards do notapply to all cancer patients. Only around onethird of patients diagnosed with cancer comethrough the urgent GP referral route and thusfall under the two week and 62 day standards.Also, the 31 day standard only applies to thefirst treatments for cancer. It therefore does notcover second or third treatments when patientsrequire several treatments in sequence, forexample radiotherapy after surgery, nor does itapply to patients requiring treatment forrecurrence of cancer.4.7 The government made a commitment to“go further on cancer waits” in its 2005election manifesto. Extensive consultation hasbeen undertaken with key stakeholders todetermine what the priorities should be in thisarea and how they should be achieved.The Cancer Services Collaborative has beenundertaking pilots to test a range of newapproaches to implementation.●●●●The 31 day standard will be extended tocover all cancer treatments. Primary CareTrust (PCTs) and trusts will need toensure that they are compliant with thisextended standard for all patientsreceiving surgery and drug treatment byDecember 2008. The largest impact ofthis change will be in radiotherapydelivery, where increased capacity willparticularly be needed and some areaswill not be able to meet this deadline.PCTs should set out challenging goals forachieving this standard for radiotherapy,which should be approved by their SHA.We expect this standard to be fullyimplemented by December 2010;In addition to patients referred urgentlyby their GP, all patients with suspectedcancer detected through nationalscreening programmes will in futureenter the 62 day pathway. Detailedguidance will be provided early in 2008;Hospital specialists will now have theright to ensure that patients who werenot referred urgently by their GP, butwho have symptoms or signs indicatinga high suspicion of cancer, are managedon the 62 day pathway. In some parts ofthe country, this is already being done.As a matter of good clinical governance,such arrangements should be put inplace in all localities during 2008; andAs announced in September 2007, allpatients referred to a specialist withbreast symptoms, even if cancer is notsuspected, should be seen within twoweeks of referral. This is already beingachieved in several centres and could beachieved elsewhere, for example byincreasing capacity by training nursepractitioners to undertake clinicalassessment. We expect this standard tobe fully implemented by December 2009.

58 CANCER REFORM STRATEGY4.9 Further guidance on delivering these cancerwaits standards will be issued to the NHS inearly 2008.Improving Outcomes Guidanceimplementation4.10 Part of the purpose of the servicereconfiguration recommended by the ImprovingOutcomes Guidance is to enable complexsurgical procedures to be carried out byspecialists. To see further improvements incancer surgery it is essential that thisreconfiguration is fully implemented nationally.4.11 The timetable for implementation of theImproving Outcomes Guidance is as follows:●Breast, lung and bowel – alreadyimplemented;●Children & young people’s cancer, brain,sarcoma and skin – by 2010/11.4.12 The Department of Health and theHealthcare Commission will continue to worktogether to ensure that implementation of thisseries of guidance is completed.Surgery4.13 Surgery has been the mainstay oftreatment for many types of cancer for manyyears. Surgery cures more patients of cancerthan any other intervention. For most cancers,surgery is the principle treatment for the vastmajority of patients. Exceptions to this includelung cancer, pancreatic cancer, haematologicalcancers and those cancers that present asdisseminated disease without an obviousprimary source.●●Gynaecological, upper GI, urological andhaematological – by the end of 2007;Head & neck and supportive & palliative care– by December 2008; and4.14 For many cancers, surgery is used as thefirst treatment. In these cases, over 99% ofpatients requiring surgery are being treatedwithin 31 days under the current standard.However, for some cancers such as bladder,pancreatic and skin cancer, it is relativelyFigure 7: Changes in surgical activity related to cancerOesophogastric,-28%Lung 8%Bowel (Colon and Rectum), 8%Breast (Mastectomy and Breast), 35%Prostate, 336%Liver (Hepatectomy andDestruction of Liver Lesions),543%-100% 0% 100% 200% 300% 400% 500% 600%Percentage change between 1997/98 and 2005/06

CHAPTER 4: ENSURING BETTER TREATMENT 59common for definitive surgery not to be the firstprocedure.4.15 Under the new extension to the 31 daystandard NHS Trusts will need to ensure thatpatients undergoing definitive surgery as asecond or subsequent treatment do notexperience delays.4.16 Overall demand for cancer surgery is likelyto rise based on current trends, although thepattern varies between cancer types. Figure 7shows trends in activity related to different typesof surgery, based on data from Hospital EpisodeStatistics.4.17 The quality of cancer surgery has improvedand will continue to improve. More patients arebeing treated by specialist surgeons who gainexpertise in particular procedures, such asoesophagectomy and prostatectomy and there isgood evidence that this is leading to improvedoutcomes.Laparoscopic surgery forcolorectal cancer4.18 Over the next five to ten years we canexpect to see more widespread use of minimallyinvasive surgical techniques for cancer, includinglaparoscopic (keyhole) surgery and possiblyrobotic surgery for some cancers. The lessinvasive techniques should lead to lowermorbidity and speedier recovery for patients aswell as cost savings for the NHS due to reducedinpatient days, which could be reinvested toimprove patient care further.4.19 Laparoscopic surgery for colorectal cancerhas been approved by NICE, but is not widelyavailable as only around five to ten percent ofsurgeons have been trained to use thistechnology. Patients cannot therefore always beoffered this option and the benefit in terms ofmore rapid recovery that can go with it. Costs ofstandard and laparoscopic surgery are broadlysimilar.4.20 NICE made clear that laparoscopiccolorectal surgery should only be performed bysurgeons who had completed appropriatetraining in the technique and who performedthe technique often enough to maintaincompetence. To increase the use of this formof surgery, a pilot training programme forlaparoscopic surgery will therefore beestablished which will be fully evaluatedfor potential national rollout. Furtherinformation on this is in chapter 11.4.21 Positive NICE appraisals are usually coveredby a three month funding direction which placesan obligation on PCTs to fund the servicerecommended in order to make it “normallyavailable” within three months. However, awaiver to the funding direction for laparoscopicsurgery for colorectal cancer was issued by theDepartment of Health on 31 October 2006, togive the NHS sufficient time to build up thenecessary expertise. This waiver will be liftedin due course, so it will be important thatthe NHS prepares for the introduction ofthis technique locally. Trusts will need to:Box 13: Specialist surgery for oesophageal cancerOesophagectomies (an operation to remove the ‘food pipe’) and oesophagogastrectomies(to remove both the food pipe and the stomach) are two examples of cancer surgery that areincreasingly done by specialists.In 1997/98, 309 surgeons in 147 Trusts carried out these operations. By 2004/05, they wereconcentrated in the hands of only 188 surgeons in 96 Trusts.The impact of this has been significant – the number of patients that died in hospital followingone of these operations almost halved in this period (from 9.4% to 4.9%).Although there will be a number of factors that contributed to this, one is specialisation bysurgeons and their teams.

60 CANCER REFORM STRATEGY●Identify suitable surgeons (and theirsupporting teams) to receive nationaltraining and release them for thistraining;●There is currently a 2.5 fold variation inradiotherapy activity between cancernetworks, which cannot be attributed todifferences in levels of need;●●●Allow some surgeons to become“laparoscopic colorectal surgery trainers”as part of the national programme;Put the necessary facilities andequipment in place to providelaparoscopic colorectal surgery; andStart to offer the option of laparoscopiccolorectal surgery to patients as soon asthey have the necessary capacity andexpertise in place to do so and byDecember 2009 at the latest.Radiotherapy4.22 Radiotherapy has an important role in thetreatment of many different forms of cancer.For some cancers radiotherapy may be the mainform of treatment, such as for cancer of thelarynx, where preserving the voice-box may be ahigh priority. For other cancers, radiotherapymay be used alongside surgery, for example inbreast conserving procedures for breast cancer,or alongside chemotherapy such as foroesophageal cancer. Radiotherapy is alsoextensively used to alleviate symptoms ofadvanced cancer, such as pain from bonemetastases. Experts estimate that at least half ofall cancer patients require radiotherapy at somepoint in their care pathway.4.23 The National Radiotherapy Advisory Group(NRAG) has submitted a report to Ministersentitled “Radiotherapy: developing a world classservice for England”. Key findings from thisreport, which was published in May 2007, are asfollows:●●The need for radiotherapy wasunderestimated in the past;Demand is set to grow over the next tenyears;●●●●On average around 30,000 fractions arecurrently being delivered per millionpopulation, with a range of 17,000 to48,000 fractions per million betweennetworks;By 2016 it is estimated that there will be aneed for around 54,000 fractions per millionpopulation, requiring more staff and linearaccelerator machines (linacs);The NHS needs to make best use of existingstaff and equipment. Across a radiotherapydepartment an average output of 8000fractions per linac (radiotherapy machine) perannum should be achievable immediately,working towards at least 8,700 fractions by2016; andThere is a clear need to collect better data onradiotherapy activity.4.24 To achieve a world class radiotherapyservice local investment will be neededboth in equipment and workforce. Most(85%) radiotherapy is given as a second or thirdtreatment after surgery and/or chemotherapy, orat the recurrence of cancer. If NHS Trusts areto meet the new extension to the 31 daystandard, increased capacity in radiotherapywill be urgently needed.Radiotherapy facilities4.25 Following the publication of the NHSCancer Plan, over £500 million was invested inadditional and replacement equipment forcancer, including 167 new linacs (October 2007figures) for radiotherapy.4.26 Despite this, the average number of linacsper million population is still below manyEuropean countries. A 2005 report from theESTRO QUARTS project which compared thenumbers of megavoltage therapy units (linacsand cobalt units) per million population forseveral European countries including England

CHAPTER 4: ENSURING BETTER TREATMENT 61showed that England has relatively lowradiotherapy capacity. 26 This level of capacity notonly limits patient care but also constrainsresearch.4.27 Additional radiotherapy equipmentwill be needed in many parts of thecountry. Local decisions will need to bemade regarding the siting of additionalcapacity, with patient convenience beingtaken into account. Where it is agreed todevelop radiotherapy services on new sitesthese should be formally integrated intothe existing network of radiotherapyprovision.4.28 PCTs working with each other in theircancer networks will want to review theirlocal radiotherapy services to ensure that:●●Recommended levels of fractionationand linac productivity are achieved as setout in the NRAG report; andProviders have sufficient capacity tomeet the widened 31 day waiting timestandard for all radiotherapy within aspecified timescale and by December2010 at the latest.4.29 In discussions held with commissionersthere is recognition of the importance ofensuring that network plans fordevelopment of Radiotherapy services arecompatible with each other beforeincreased levels of radiotherapy capacityor new services are commissioned. SHAsshould coordinate Network plans; whereappropriate SHAs may wish to call onspecialist commissioning groups to assumea coordination role.Radiotherapy workforce4.30 In spite of the increase in trainingcommissions for therapeutic radiographers(rising from 135 in 1997 to 361 in 2005), thishas been less effective than was anticipated dueto a high attrition rate of 35%. A reportcommissioned for NRAG indicated that poorlearning experiences in the clinical settingcontributed to the high attrition rate and apotential solution would be to provide a ‘safe’learning environment for students in their firstyear of training. To facilitate this NRAGrecommended the introduction of VirtualEnvironments for Radiotherapy Treatments(VERT) into radiotherapy training sites thatsimulate the radiotherapy equipment andtreatment rooms. As part of the release of theNRAG report, five million pounds of capitalfunding was announced for VERT. This fundinghas now been allocated to higher educationinstitutes and radiotherapy centres. SHAs willwish to monitor the impact on attritionrates both at higher education institute andclinical placement radiotherapy centre level.4.31 To achieve a world class radiotherapyservice investment will be needed both inequipment and workforce. A long termworkforce strategy should be developed toinclude an urgent review of workforcesupply, demand and skills mix to identifythe investment needed in both staffnumbers and types of training commissions.SHAs will need to lead this work.Proton therapy and othertechnological advances4.32 Proton therapy is a very precise form ofradiotherapy which can avoid damage to criticaltissues near the tumour. Evidence is growingthat proton therapy can be effective in treatinga number of cancers. There is a proton therapyfacility in the UK which has been runningsuccessfully for some years but it is limited by itsdesign to treatment of eye cancers. From April2008, proton therapy for suitable cancers otherthan eye cancers will be nationallycommissioned from overseas by the NationalCommissioning Group. The Department ofHealth will now consider options for providingmodern proton therapy services in this country4.33 The Department of Health will alsocontinue to work closely with relevant experts tomonitor other new developments inradiotherapy, such as intraoperative radiotherapyfor breast cancer.

62 CANCER REFORM STRATEGYDrug treatments4.34 Drug treatments for cancer havedeveloped substantially over the past 20 yearsand are set to develop further. Research withinthe UK and elsewhere has led to thedevelopment of:4.35 The number of new drugs licensed for usein different cancers is likely to grow considerablyover the next decade. Information provided byindustry sources indicates that more than half ofall new drugs currently in the industry pipelineare being developed to target cancer.●●●Combinations of drugs that have beenshown to be active against cancers whichwere previously considered resistant to drugtreatment;A new generation of hormonal therapiesintroduced in the treatment of breast andprostate cancer; andA new generation of anticancer treatmentstargeted against specific molecularabnormalities present in some forms ofcancer. Examples include imatinib (for chronicmyeloid leukaemia), rituximab (for sometypes of lymphoma) and trastuzumab(herceptin, for some breast cancers).4.36 It is important that all patients have accessto clinically appropriate and cost effectivetreatments and the establishment of theNational Institute for Health and ClinicalExcellence (NICE) plays an important part inmaking this happen. NICE is an independentbody and if it recommends that a treatmentshould be used in the NHS then a PCT mustfund its use for eligible patients (defined asthose who meet the criteria specified in theNICE guidance) within three months of NICE’sfinal guidance being issued. This ensures thatthere is national consistency in how the NHSuses new treatments.4.37 Over the past seven years, NICE hasundertaken 44 appraisals of cancer drugs,representing about a third (34%) of all itsFigure 8: Expenditure on cancer drugs dispensed in hospitals and in the community from2002 to 2006 27800700600Cost (£ Millions)50040030020010002002 2003 2004YearAll Anti-Cancer DrugsSpend on 'Standard' Cancer Drugs2005 2006Spend on NICE Approved DrugsSpend Supportive Cancer Drugs

CHAPTER 4: ENSURING BETTER TREATMENT 63technology appraisals. Thirty nine of theseappraisals have partly or fully recommended theuse of the treatment in the NHS. The 44appraisals relate to 23 different cancer drugs,some of which have been appraised for morethan one indication (use).4.38 In line with this, expenditure on anticancerdrugs has increased as indicated by Figure 8 (onprevious page).4.39 In total, approximately £729m was spentin 2006 on drug treatment for cancer. Thefastest growth relates to the more newlylicensed anticancer drugs which have beenapproved by NICE. Over an 18 month periodbetween 2003 and 2005, the median rate ofusage for 14 anticancer drugs approved by NICEincreased by 47 percent.4.40 However, despite this several problemswith access to drug treatments for cancer havebeen identified on which action is needed:●●●●Local decisions where NICE guidance is notavailable;Time lags before NICE makes its appraisaldecision;Variable use of NICE-approved drugs acrossthe country;Poor local planning for chemotherapyservices in some areas; andthis strategy has been developed and agree theyneed to be addressed.4.43 When NICE guidance is not yet available, itis for PCTs to determine whether or not to funda drug locally should they receive a request froma doctor/patient for its use. They have to basetheir decision on an assessment of the availableevidence, the circumstances of the patientrequiring the treatment and the health needs oftheir local population. It is not acceptable for aPCT to use a lack of NICE guidance as a reasonto reject an application for a drug. This wasemphasised by the Department in December2006 in the document ‘Good Practice Guidanceon Managing the introduction of NewHealthcare Interventions and Links to NICETechnology Appraisal Guidance’ which updatedand clarified the messages contained in HealthService Circular 1999/176.4.44 The updated advice also notes that thereare a number of valuable sources of informationavailable to the NHS, which can help in makingdecisions about the use of new treatmentswhere NICE guidance is not available. Most ofthese sources are available online and includesummaries of the available evidence on thesafety and effectiveness of new treatments. Thegood practice guidance makes clear that thesesources can help local NHS organisations makemore informed decisions. PCTs could choose towork together on these decisions, for exampleacross an SHA area. Information sources ofparticular relevance to cancer drugs are:●Ensuring patient safety.4.41 One of the issues that has been raised bysome stakeholders leading up to this strategy isthe issue of pricing of cancer drugs. The widerissue of pricing of drugs is being dealt withseparately by the Department of Health and istherefore not addressed in this document.Local decisions where NICEguidance is not available4.42 There remain concerns about the processprior to drugs being referred to NICE and alsoduring the period where NICE is consideringdrugs. We have listened to these concerns as●●London Cancer New Drugs Group whichdevelops recommendations for the managedentry of new treatments in cancer acrossLondon. Its recommendations can be foundon the National Electronic Library forMedicines website (seewww.druginfozone.nhs.uk);National Prescribing Centre (NPC) NewMedicines Scheme which provides a range ofevaluated information, both pre-and postmarketlaunch, on new medicines (seewww.npc.nhs.uk); and

64 CANCER REFORM STRATEGY●Scottish Medicines Consortium (SMC) whichprovides advice to NHS Boards and their AreaDrug and Therapeutics Committees (ADTCs)across Scotland about the status of all newlylicensed medicines, all new formulations ofexisting medicines and new indications forestablished products (licensed from January2002). While the guidance is aimed at NHSScotland, the analysis of the evidenceconsidered by the SMC is a useful source ofinformation to all local NHS managers whenmaking decisions on the introduction of newmedicines (seewww.scottishmedicines.org.uk).4.45 It would be good practice for all PCTsconsidering applications for new cancerdrugs to consider the information availablefrom these sources as a minimum as part oftheir decision-making process.NICE appraisals4.46 Whilst it is right that decisions lie withPCTs when NICE guidance is not available, it isclear that we should reduce the period whenlocal decisions are necessary to a minimum byensuring that NICE issues guidance as close aspossible to the date when a drug is licensed.We will achieve this by ensuring that the NICEfast track (Single Technology Appraisal) process,launched in November 2005, is usedappropriately and works as effectively aspossible. We have already seen how successfulthis process can be; development of guidanceon the use of Herceptin for early breast cancerstarted in parallel to the licensing process andNICE was able to issue its draftrecommendations within two weeks of the drugbeing licensed for this use. We need now toensure that the process can be as efficient for allsuitable drugs. The Department of Healthwill continue to work with NICE to ensurethat all appropriate cancer treatments areconsidered by the Single TechnologyAppraisal process and that this processworks as effectively as possible.4.47 We have also heard from a number ofstakeholders that they would welcome aguarantee that NICE will by default appraisesignificant new cancer drugs and licenseextensions. This would provide greater certaintyat an earlier stage on whether NICE guidancewill be forthcoming on individual drugs. Wetherefore propose that as a default positionall new cancer drugs and significant newlicensed indications will be referred to NICE,providing that NICE agrees that there is asufficient patient population and evidencebase on which to carry out an appraisal andthat there is not a more appropriatealternative mechanism for appraisal.4.48 There is also more general (non-cancerspecific) work being undertaken by NICE toreview its technology appraisal methodology.This work will involve a public consultation.4.49 We should remember, however, that theNHS does not have a limitless pot of money. It istherefore important that we use treatments thatare sufficiently effective to justify their cost. Wetherefore need to accept that there will beoccasions when NICE, having considered all theevidence and views from stakeholders, will notrecommend that a particular treatment is asuitable use of NHS funds. Such decisions can,understandably, be hard for patients, theirfamilies and sometimes their clinicians tounderstand and accept.4.50 If NICE does not recommend a treatmentthis does not mean that a clinician cannotdiscuss it with their patient. It is good practicefor a clinician to discuss all clinically appropriatetreatment options with their patients. However,it will be important if a treatment that is notavailable on the NHS is discussed, that a patientunderstands why it is not available on the NHS.Reducing variation in drug usage4.51 Concern has also been expressedregarding variations in usage of anticancer drugsbetween different cancer networks in Englandonce approved by NICE. A report issued by theNational Cancer Director in September 2006showed that the use of drugs increased acrossthe country following a positive appraisal fromNICE – an increase of 47% from late 2003.It also showed that variation in the use of thesedrugs reduced across the country. Althoughthere is still scope to reduce this variation in

CHAPTER 4: ENSURING BETTER TREATMENT 65usage further, the report clearly showed that theNICE process is working ensuring increasedaccess to drugs and less variation in their use,but we need to keep on top of this. TheNational Cancer Director will thereforerepeat his evaluation of NICE-approvedcancer drug usage during 2008 to ensurethat patients across the country continueto have access to cancer drugs positivelyappraised by NICE.4.52 Current audits do not collect sufficientinformation to understand why thesevariations occur. We will therefore ask allchemotherapy service providers to collectand return an agreed dataset on all patientsreceiving chemotherapy. Further informationon data collection is provided in chapter 8.4.53 Trusts providing chemotherapy are alreadyrequired to collect the outpatient commissioningdata set and reference costs to support theintroduction of Healthcare Resource Group 4(HRG4, the latest national currency system, isalready being used for costing purposes).However, chemotherapy cost data submitted inJune 2007 as part of the 2006/07 reference costcollection were not robust. The introduction ofHRG4 for chemotherapy payment will begreatly facilitated by e-prescribing andtrusts that have not already done so wouldbe wise to invest in these. PCTs shouldincentivise this through commissioningcontracts and monitoring.Supporting better local planningfor chemotherapy4.54 Better data collection on chemotherapyactivity will also aid PCTs in their planning.As expenditure on cancer drugs continues toincrease, financial and capacity planning isessential both before and after NICE appraisals.4.55 PCTs, working through cancer networks,are responsible for planning the introduction ofnew treatments for cancer. The ChemotherapyPlanning Oncology Resource Tool (C-Port) hasrecently been developed through a partnershipwith industry, the Cancer Action Team and theNHS to support local planning. PCTs will expectproviders to demonstrate that they haveplanned for the safe introduction of newdrugs in a thorough and cost-effective way.Use of the C-Port tool will enable Trusts todo this.International comparisons of drugutilisation4.56 Usage of new anticancer drugs isestimated to be considerably lower in Englandthan in other developed countries, with usage atapproximately 60 per cent of that in other majorEuropean countries. An analysis by theAssociation of the British PharmaceuticalIndustry (ABPI) indicates that the usage ofanticancer drugs across Europe will continueto increase. The actions set out above willincrease the use of anticancer drugs in thiscountry. As this strategy is implemented,we will work with our partners in thepharmaceutical and biotechnology industriesto continue to monitor how use ofanticancer medicines in the NHS in Englandcompares to other European countries.The National ChemotherapyAdvisory Group4.57 The Department of Health has establisheda National Chemotherapy Advisory Group(NCAG) which is considering all aspects ofchemotherapy using a care pathway approach(assessment; decision making; prescribing;dispensing; delivery; reassessment andmanagement of complications). The NCAGreport which is due in spring 2008 willrecommend next steps for chemotherapyservices in general. In particular it will highlight:●●●●The year on year increases in chemotherapyactivity;Potential new service models;Out of hours management and theimportance of information about anindividual’s care being available across anetwork, especially as patients may presentas an emergency at a location separate fromthat in which their treatment was delivered;Governance structures;

66 CANCER REFORM STRATEGY●●●●Specific safety issues, especially those relatedto oral chemotherapy;The management of febrile neutropenia;Workforce requirements; andGuidance for commissioners.surgery has pioneered the publication of riskadjusted clinical outcomes for hospitals to helppatients with their decisions when undergoingelective surgery. Similar information could andshould be made available for cancer patients.Chapter 8 sets out in detail how we will collectmore information on cancer services andoutcomes.Ensuring safe delivery ofchemotherapy4.58 The cancer peer review programme hasshown that there are significant weaknesses inthe way that cancer services are delivered.These include:●●●●Poor governance and safety arrangementsboth within and between organisations;Poor and cramped environments;Overstretched services; andSome small, poorly set up services withminimum infrastructure.4.59 These weaknesses in chemotherapysystems are also reflected in reports to theNational Patient Safety Agency (NPSA). Alongwith missed diagnosis of cancer (see chapter 3)and radiotherapy errors, chemotherapy errorsare one of the three areas of concern related tocancer highlighted by the NPSA.4.60 PCTs working with each other in theircancer networks will want to undertake a reviewof the safety of their chemotherapy services.They should set out in clear specifications whichtreatments should be provided in what locationsand to what safety specifications, takingaccount of forthcoming advice from theNational Chemotherapy Advisory Group.Auditing cancer treatments4.61 Building on the existing national clinicalaudits for several cancers, we need to collect,analyse and feedback more information abouttreatment and outcomes for cancer patients.National comparative audits will help clinicalteams and commissioners to monitor andimprove service quality. The field of cardiacNew developments in cancertreatment4.62 The pace of change in cancer treatment isfast and it is likely that improved forms ofsurgery, radiotherapy and drug treatment willcontinue to be developed. Other approaches,such as photodynamic therapy, may also havean increasing role in the treatment of cancer.Provided that these new treatments are clinicallyand cost effective, we will want to ensure thatthey are rapidly made available to all patientswho could benefit.4.63 The National Cancer Research Network(NCRN) has an important role to play inidentifying potential new therapies and ensuringthat clinical trials are undertaken in a timelymanner. In doing this, NCRN engages with bothpharmaceutical companies and NICE with theaim of maximising the impact of NCRN trials onsubsequent NHS practice.4.64 In October 2007, Lord Darzi announcedthe creation of a new Health Innovation Council.It will give a lead on innovation from discoveryto adoption. The Council will advise on howbest to overcome barriers to the use of costeffectivenew medicines, medical technologies,procedures and processes throughout the NHSand social care system. It will encourage agreater focus on innovation by supporting thediscovery and development of new products andtechniques and encouraging greater adoption ofmodels of care where there is good evidence ofimproved outcomes. Its work will be closelylinked to the work of commissioners, especiallyin light of the world class commissioningprogramme which seeks to improve healthoutcomes by involving the public, their widerpartners and clinicians in the design of servicesthat are innovative and evidence based.

CHAPTER 4: ENSURING BETTER TREATMENT 674.65 The groups who met to discuss their 2012visions for particular cancers and groups ofcancers made predictions about how cancertreatment will change. Some of these are setout below.Box 14: Breast cancer●●More new drugs available for early and advanced disease; andMore surgeons will have been trained in oncoplastic techniques.Box 15: Colorectal cancer●●●●Surgery will remain the mainstay of treatment for most patients, but laparoscopic surgerywill be becoming the norm at least for elective surgery for colon cancer in combination withEnhanced Recovery Programmes;Novel techniques (such as transanal excisional microsurgery – TEMS) will be available inmajor centres for highly selected groups of patients;Increase in preoperative radiotherapy and Image-Guided Radiotherapy; andChemotherapeutic agents will be more widely used in the adjuvant setting.Box 16: Lung cancer●●Treatment will be more complex (such as parenchymal – sparing surgery, combinationchemo-radiotherapy, biological therapies etc); andNew, less toxic, drugs are likely to be available and methods are likely to become available tobetter individualise therapy.Box 17: Urological cancersProstate●●●●The ProtecT trial will have reported its early findings, informing a clinical consensus on themost appropriate treatment options for localised prostate cancer;The use of laparoscopic and robotic surgery, brachytherapy and active surveillance willcontinue to increase;More evidence will be available on newer treatments, such as HIFU and Cryotherapy; andFor more advanced disease, there will be more chemotherapy, more radiotherapy, newhormonal treatments and novel approaches.Other urological●●Increased use of laparoscopic surgery, as well as techniques such as radiofrequency ablation,cryotherapy and high intensity ultrasound; andMore targeted therapies and more evidence to support concurrent chemotherapy andradiotherapy.

68 CANCER REFORM STRATEGYBox 18: Haematological cancers●●More targeted therapies and an associated increase in intravenous chemotherapy; andExpansion in use of autologous and allogeneic transplantation in nearly all haematologicalmalignancies and cellular therapy for certain malignancies.Box 19: Gynaecological cancersVulval●●Use of sentinel lymph node assessment is likely to become established in clinical practice;andReconstructive surgery may have an emerging role.Endometrial●●●Greater use of laparoscopic surgery;More cytotoxic chemotherapy will be used in both adjuvant and advanced disease; andThe role of chemotherapy with radiotherapy in place of radiotherapy alone may beestablished.Cervical●●Mainstay for advanced disease will remain chemotherapy with concomitant radiotherapy;andGreater laparoscopic surgery expected for early state cervical cancer management.Ovarian●●●Greater reliance on neoadjuvant chemotherapy;More interval debulking surgery and radical cytoreductive surgery, as well as more surgeryfor selected cases of recurrent cancer and palliative surgery; andMore established role for intraperitoneal chemotherapy.Box 20: Upper gastrointestinal cancers●●More targeted therapies and neoadjuvant chemotherapy; andMore need for radiotherapy.Box 21: Head and neck cancers●●More targeted therapies, which will require more sophisticated molecular andimmunohistochemical profiling of cancer specimens; andMore complex advanced radiation techniques.

CHAPTER 4: ENSURING BETTER TREATMENT 69Box 22: Thyroid cancer●●Increased use of radioactive iodine and other targeted radioactive substances; andMore node dissection as part of surgery.Box 23: Brain and Central Nervous System cancers●●●More combination therapy including surgery with chemo-radiation;More highly conformal and hyperfractionated radiotherapy; andProton therapy, especially for children.Box 24: Sarcoma●●●Increased use of conformal radiotherapy and proton therapy;More preoperative radiotherapy; andNew drugs.Box 25: Skin cancer●●●More targeted adjuvant chemotherapy and topical treatments;Increased use of photodynamic therapy and Mohs’ micrographic surgery; andPossible new drug agents for patients with advanced disease.

70Chapter 5:Living with and beyond cancerChapter Summary●●●●●●●Commissioners should ensure that NICE guidance on supportive and palliative care isimplemented as planned by December 2008;National information pathways and tailored information prescriptions will help to ensure thatpatients receive high quality information at each step in the care pathway;All senior cancer professionals will, over time, be expected to demonstrate that they havethe necessary competencies in face-to-face communication;Improved information and communication will empower patients who wish to be involved indecision making;Commissioners and providers should ensure that the critical roles of clinical nurse specialistsin information delivery, communication and coordination of care are supported;A new national cancer survivorship initiative will be established; andProgress on improving the experience of cancer patients will be monitored through annualsurveys.Introduction5.1 The NHS Cancer Plan highlighted the factthat the diagnosis and treatment of cancer canhave a devastating impact on the quality ofpatients’ lives and that of their families andcarers. Cancer patients face uncertainty and mayhave to undergo unpleasant and sometimesdebilitating treatments. Patients and theirfamilies and carers, need access to informationand support throughout the care pathway.5.2 Many patients find the following timesparticularly challenging: the time arounddiagnosis; the period immediately followingcompletion of treatment; the time of any relapseand the time when it is clear that the end of lifeis approaching.5.3 The incidence of cancer is rising, due mainlyto the ageing population. Survival rates forcancer are also improving, with ten year survivalrates having doubled in the last 30 years andcontinuing to increase. This means that the totalnumber of people living longer with cancer isgrowing considerably. Many patients who arecured of their cancer may be left with physicalor psychological effects from the diagnosis andtreatment of their disease. Some cancer patientswill live for many years receiving activetreatment as their disease relapses and remits.As more patients become long term survivors ofcancer it is increasingly important that theyshould be provided with the assistance theyneed to resume as normal a life as they can.5.4 National Institute for Health and ClinicalExcellence (NICE) issued guidance in 2004 onthe provision of supportive and palliative carefor adults with cancer. In response to this,cancer networks have developed action plans

CHAPTER 5: LIVING WITH AND BEYOND CANCER 71for implementation of this guidance. However,the extent of implementation to date has beenmixed and the target of full implementation byDecember 2007 will not be met by all cancernetworks. In recognition of some of thedifficulties faced by networks, we haveextended the deadline for implementationto December 2008. We remain absolutelycommitted to the full implementation ofthe guidance. Chapter 9 sets out how goodcommissioners should use the tools at theirdisposal to ensure this happens. The CancerAction Team will continue to have animportant role to play in developing andspreading good practice in this respect.5.5 However, our determination to improve theexperience of people living with and beyondcancer does not begin and end with achievingfull implementation of the NICE guidance. Wewant to empower patients to:●●●Fully understand about their cancer and itsmanagement;Be involved in decision making as they wish;andMake choices about their care as they see fit.5.6 This chapter sets out a range of initiatives toimprove patients’ experience of living with andsurviving cancer. In particular, it focuses on:●●●●●Information, communication, decisionmaking and choice;Coordination and continuity of care;Psychological support;Supportive and palliative care;The critical importance of Clinical NurseSpecialists (CNSs);●●Surviving cancer; andMeasuring patients’ experiences as amechanism for improving the quality ofservices.Information, communication,decision making and choice5.7 Patients, health professionals and cancercharities who were consulted during thedevelopment of this strategy stronglyrecommended that the issues of information,better face-to-face communication and supportfor decision making should be given the highestpriority with regard to actions to improvepatient experience. Integrated action on theseareas should now be taken at both national andlocal levels.Information and communication5.8 Access to high quality information is aprerequisite for patients to be able to participatein decision making about their care and to reducetheir fear of cancer. Providing information,alongside the support to understand and act onthat information, can empower patients to retainor regain control over lives.5.9 Individual patients will want to acquireinformation in different ways. For many, face-tofacecommunication with a health professionalthey trust is of paramount importance. Manywill also wish to supplement face-to-facecommunication with other types of information.Some will want to discuss their condition withothers who have experienced similar challenges.Face-to-face communication5.10 Evidence has shown that thecommunication skills of health professionals canbe improved by training. Good communicationskills underpin all elements of care and willenable staff to encourage patients to discusstheir needs and preferences.●●Appropriate training for healthcareprofessionals;Helping patients meet the cost of cancer;5.11 A national programme for advancedcommunication skills training for seniorhealthcare professionals has been developed forcancer. Since 2003, 150 facilitators have beentrained to deliver three day courses for senior

72 CANCER REFORM STRATEGYBox 26: Our vision for informing, engaging and empowering patients●●●●●Face-to-face communication with healthcare professionals should enable those affected bycancer to gain a clear understanding of their condition, have their concerns and preferenceselicited and become engaged in decisions about their care;People affected by cancer should be offered high quality information at key points in theircancer journey, tailored to their individual needs. Some patients will need additional supportto understand and act upon the information they are given;Information delivery should be an integral part of each step in the care pathway. It shouldreinforce face-to-face communication with a health professional. It should be available inprimary and secondary care and from other outlets including dedicated information andsupport centres and libraries;Information needs to be evidence based, balanced, regularly updated and composed in plainlanguage. It needs to be culturally sensitive and available in a variety of formats. It shouldinclude personalised details, be locally customised and be available with a focus suitable tothe patient’s needs at a given point in time; andThe purpose of communication and information is to inform and empower patients so thatthey can play an active role in decisions about their care and treatment if they so wish.health professionals. 1,300 health professionalshave participated in these courses.5.12 The current three variants of thecourse for advanced care professionals arebeing merged into a single course tofacilitate national rollout. The course nowneeds to become standard local practice.The expectation is that over time all seniorhealthcare professionals will be able todemonstrate that they have the level ofcompetencies to communicate complexinformation, involve patients in clinicaldecisions and offer choice, as part of theirprofessional development and basiccompetence. Primary Care Trusts (PCTs)should ensure that they commissionservices from healthcare professionals whohave received training and can demonstratethis through, for example, peer review.5.13 Furthermore, in addition to trainingsenior healthcare professionals, we need toensure general and community basedclinicians and other healthcare staff whotreat and support cancer patients have hadaccess to good communication skillstraining at a range of levels. ContinuingProfessional Development needs to be inplace for this.5.14 Specific communication skills are neededfor effective face-to-face communication withchildren and young people. A number ofsuccessful pilots have been run withhealthcare professionals working in thisarea and a course, based on the nationalmodel, will be developed.Information products, pathways andprescriptions5.15 There are a number of high qualityinformation products for cancer patients,frequently produced by cancer charities.These cover a wide range of topic areas, suchas cancer and its treatment, local services,returning to work and financial benefits and areavailable in different formats (electronic, printed,audio, video etc.).5.16 Cancer networks have been working withthe Cancer Services Collaborative ImprovementPartnership to develop standardised informationpathways, establishing the different types ofinformation product that patients with specificcancers may wish to access at different keypoints in the care pathway. Over 160 pathwayshave been mapped and twenty one cancernetworks have at least two tumour specificpatient pathways agreed. Work to collate theselocally produced patient information pathways

CHAPTER 5: LIVING WITH AND BEYOND CANCER 73into national pathways is complete for tendifferent cancer types.5.17 However, there are several ways in whichinformation for cancer patients needs toimprove. In particular:●●●●●●There are gaps in the information providedfor some of the less common cancers and inrelation to survivorship, relapse and advancedcancer;About 50% of information is locallyproduced, without necessarily having thebenefit of expert input and quality assurance;There is no current capacity to tailorinformation significantly for individualpatients;We do not have a repository of bite sizedpieces of information focusing on particularaspects of care;While some cancer networks haveinformation managers in post, others do not;andThere is currently no dedicated trainingavailable for Multidisciplinary Team (MDT)members on patient information delivery.5.18 The Cancer Reform Strategy thereforeoutlines a range of initiatives to improve patientinformation products and pathways.5.19 Our immediate next step is for cancernetworks to adopt and implement thetumour specific national informationpathways which will be launched in 2008.This will make nationally agreedinformation available to frontline cancerhealth professionals to offer to patients atkey points in their cancer journey.5.20 As set out in the White Paper Ourhealth, our care, our say: a new directionfor community services 28 we are alsointroducing ‘information prescriptions’. Thesepersonalised prescriptions will draw on local aswell as national knowledge and information andwill guide people to the relevant websites,telephone numbers and support groups for theircondition, as well as providing informationdirectly to patients at appropriate times duringtheir care pathway.5.21 We are piloting information prescriptionsin twenty sites during 2007, including in foursites focusing on cancer (County Durham, Mid-Trent, Queen Elizabeth Hospital Birmingham andRoyal Marsden Hospital London). These pilotsare being run in partnership with voluntaryorganisations such as Cancerbackup andMacmillan Cancer Support, testing prescriptionsbased on network standardised prescriptionpathways. The evaluation of the pilotprogramme, which will take place during 2008,will inform the national implementation ofinformation prescriptions for all people withlong-term conditions, including cancer.Information on the initial findings from the earlypart of the piloting programme is now availableon-line at www.informationprescription.info.A specific post has been funded by the CancerAction Team to work alongside the cancer pilotsites and share their learning with theother 26 cancer networks.5.22 To support the introduction ofinformation prescriptions, a three-waypartnership between Cancerbackup, CancerResearch UK and Macmillan Cancer Supportis developing a system to enable healthprofessionals to generate tailoredinformation prescriptions at any point inthe cancer pathway. The system will drawon high-quality national content to makeup the information prescription, whilst alsoensuring the local cancer networkinformation leads and MDT teams are ableto add local details. The project will bedeveloped in 2008 for roll out in 2009.The system is intended to be of use for anyhealth or social care professional engaged incancer care.5.23 Infrastructure and support is alsoneeded at a network level to achieveimprovements in patient informationdelivery. Cancer networks without a patientinformation manager are encouraged to

74 CANCER REFORM STRATEGYconsider creating this post and to identifypatient information leads in each trust inthe network.5.24 Providers will wish to consider how theycan best audit information delivered toindividual patients and whether this is meetingpatients’ needs. Particular attention should bepaid to the needs of at risk groups.Decision-making and choice5.25 Patients with cancer vary in the extent towhich they wish to be involved in decisionmaking.Some wish to take an active role,others wish to share decision-making with thehealth professionals caring for them and otherswish to adopt a passive role. Patients should befree to adopt any one of these roles, or indeedto be active about some aspects of their careand passive about others. One of theresponsibilities of a clinician caring for a patientis to discover from the patient what role or rolesthey want to adopt and to ensure that,irrespective of their decision, they are treatedwith dignity and respect.5.26 Some patients will wish to make choicesabout the team or hospital they want to delivercare at different points in the care pathway.They should be able to do so, choosing fromproviders that are compliant with relevantImproving Outcomes Guidance. In order tomake choices that are appropriate to their owncircumstances patients will need goodinformation on the availability of services andon outcomes. Chapter 8 sets out how we willcollect and publish data on services andoutcomes through the establishment of a majornew cancer intelligence initiative.5.27 Experience outside cancer and frominternational settings has shown that theintroduction of the offer of choice can result inimprovements in service quality and timeliness.Services which are below average may beincentivised to put things right, so as not to losepatients to other providers.5.28 It is important to recognise that choice isnot simply about the location of care. Patientstold us that they expect to be told of all clinicallyappropriate treatments, even if those treatmentswere not funded by the NHS (see chapter 4).Examples of the types of choices that patientsmight have in the future are set out below.5.29 One important use of information is tohelp patients make informed treatment choices.Box 27: ChoiceChoice of TreatmentA woman with a large cancerin her left breast would berecommended to undergo amastectomy (removal of thebreast). Some hospitals canoffer immediate breastreconstruction but in othersthe patient will need aseparate operation at a laterdate. A patient may wish tochoose the team that offersthe same day operation.Choice of TreatmentA man with bowel cancerneeds surgery to remove thetumour. His surgeon canperform a standard operationto remove it requiring amajor incision and hospitalstay of around 10-14 days.A team in a neighbouringhospital have recently beentrained to remove suchtumours using a new keyholesurgical technique offering afaster recovery time. He maywish to choose the newtreatment, even if it meanstravelling further.Choice of LocationA patient living in Exeter isdiagnosed with throat cancerand needs radiotherapyrequiring 30 dailyattendances at hospital over6 weeks. He would prefer tohave this treatment in Derby,where his daughter lives andwould like to be able tochoose to have the treatmentthere instead.

CHAPTER 5: LIVING WITH AND BEYOND CANCER 75Box 28: Informed decision makingShared decision-making about treatment options is important, but not widely practised in clinicalcare. Patient decision aids have been shown to increase patients’ knowledge, involvement indecision-making and preventative behaviour and they lead to more appropriate use of tests andtreatment. In some circumstances they have also been shown to improve cost effectiveness byreducing the use of unnecessary or unwanted interventions (Picker Institute).The Urology Informed Decision Making project has been piloting the implementation of decisionaids for early stage prostate cancer into routine practice in the NHS since 2004. Phase I was pilotedusing US materials in four hospitals and the findings have been fed into Phase II which is beingpiloted in six further sites. This phase of the project is developing patient booklets and DVDssuitable for UK practice, along with delivering staff training workshops and staff training DVDs.The project is due to rollout the materials from April 2008 using established cancer networks.Some good practice models exist of how peoplewith cancer can be involved in these choicesthrough the use of decision aids. One suchexample is below.Coordination and continuityof care5.30 Care for cancer patients is complex andoften involves multiple different healthprofessionals working in the community, insecondary care and in specialist centres(see the box below for one example). Goodcoordination of care is therefore imperative.This requires effective systems to be in place,so that care is seamless from a patient’sperspective.5.31 The establishment of multidisciplinary teamworking has been critical to improvements incoordination of care for cancer patients over thepast few years. Within these teams, MDTcoordinators and clinical nurse specialists haveoften taken the lead in ensuring continuity,coordination and smooth transitions betweenhospital and community.Box 29: Health professionals involved in Jim’s cancer journeyGood coordination is vital given the variety of health professionals who can be involved in apatient’s care. Jim, a patient with bowel cancer, kept a record of all the people who wereinvolved in treating and supporting him over a 26 month period.In the hospital there were 111 staff:●●●●22 doctors (including consultant surgeons, anaesthetists, haematologists, oncologists,radiologists, pathologists and junior doctors);63 sisters/nurses (including clinical nurse specialists, nurses in theatre and on wards, nursesspecialising in areas such as endoscopy, stoma care and pain management and healthcareassistants);10 allied professionals (including a physiotherapist, dietician and radiographers who takescans); and16 other healthcare staff (such as pharmacists and laboratory technicians).In the community there were 15 staff:●●3 GPs; and12 district and practice nurses (including out of hours support).

76 CANCER REFORM STRATEGY5.32 Commissioners will want to work withproviders to ensure they have robustsystems in place to ensure that patientsexperience good continuity of care.These include:●●●●●Full assessment of an individual patient’sneeds at key stages in the care pathway andthe development of formal care plans suchas for diagnosis; end of treatment; relapse;and as end of life approaches;Care plans should be communicated to allteams / professionals involved in the patient’scare in a timely way;Systems to enable the rapid and securetransfer of information around the system;Rapid communication between sectors at thetime of key events (such as informing a GPof a patient’s diagnosis or of their deathwithin 24 hours of the event); andEnhancing the role of community teams inthe management of cancer patients, as hasbeen done in the Integrated Cancer CareProgramme, through the appointment ofcare trackers and through enhancing theskills of community nurses.Psychological support5.33 Cancer patients and their families andcarers may need psychological care and support.This can be as important as any other aspect oftheir treatment. Good psychological supportservices should be in place to support patientsfrom the point of diagnosis and as they movealong the patient pathway and progress theircancer journey.5.34 There are four key levels of psychologicalsupport:●●Level 1: Effective information giving,compassionate communication and generalpsychological support;Level 2: Psychological interventions, such asanxiety management, problem solving;●●Level 3: Counselling, theoretically drivenpsychological interventions, such as cognitivebehavioural therapy and solution focusedtherapy; andLevel 4: Specialist psychological andpsychiatric interventions.5.35 Providing support for patients experiencingdistress is a key component of the role of theCNS. Yet delivering this effectively will requireappropriate training and support.Commissioners should work collaboratively toensure that this is available.5.36 It is important for all service providers tohave established pathways to enable patients toaccess specialist level three and four support asand when they need it. Commissioners will needto ensure that adequate provision is available sothat all patients, families and carers can accessthe appropriate psychological support for them.This will include establishing service levelagreements with local mental health services formore advanced support.Supportive and palliative care5.37 As discussed earlier in this chapter,implementing NICE guidance will significantlyimprove the quality of supportive and palliativecare available to patients.5.38 The systematic reviews undertaken for thedevelopment of the NICE guidance revealedstrengths and weaknesses in the worldwideevidence base related to supportive andpalliative care. Research into patients’ needs hasbeen quite strong, but research into how bestto meet those needs is lacking. As a result,NCRI set up two supportive and palliative carecollaboratives, based around consortia ofmedical schools, hospitals and hospices. Fivemillion pounds over five years of capacitybuildinggrants has been allocated to thesecollaboratives and work began in 2006. The aimof the collaboratives is to develop the researchinfrastructure capacity for supportive andpalliative care and through this leverage furtherresearch funding leading to the development ofnew, evidence based interventions.

CHAPTER 5: LIVING WITH AND BEYOND CANCER 77Box 30: Support for cancer patientsMaggie’s CentresMaggie’s Centres are for anybody affected by cancer – not just people who have beendiagnosed with cancer, but also their families, friends and carers.Maggie’s Centres help people achieve a psychologically healthy adjustment to their diagnosisand treatment. Maggie’s programme of support comprises, one-to-one support with a clinicalpsychologist, facilitated group sessions, benefits advice, nutrition workshops, relaxation sessionsand stress management courses and other activities including access to Maggie’s informationlibrary. Maggie’s programme is designed to give people the tools they need to cope with theupheaval cancer causes in their lives. Maggie’s programme and drop in facility supplements theservices available in hospitals, enabling them to provide a level of support that is beyond what isavailable in the health system. Maggie’s Centres enable people to share experiences with othersand with professional help, people are encouraged to address all aspects of living with cancer.Maggie’s Centres are free, not time limited and easily accessibly. Maggie’s Centres are built inclose proximity to major cancer centres and cancer units.There are five Maggie’s Centres in Scotland, with a sixth centre planned. The London Maggie’sCentre will open in early 2008 and further five centres are planned in Cotswolds, Nottingham,North East, South West Wales and Oxford. Throughout 2007, 58,000 visits were made toMaggie’s Centres.“Walking into Maggie’s was the best thing we ever did. It’s a real oasis. You come out ofMaggie’s and get on with living” Norrie Brown.The domestic scale and imaginative environment of the centres are a key part of the Maggie’sprogramme. Maggie’s Centres are places for people to be themselves, not a hospital patient.(www.maggiescentres.org)5.39 It is important to recognise that there are anumber of voluntary organisations and charitieswho provide high quality, innovative supportservices for cancer patients and survivors.An example of one is in Box 29.5.40 Patients with terminal cancer haveparticular supportive and palliative care needs asthey reach the last year of their life. Providingopportunities to discuss the implications ofentering the dying phase can improve thequality of life for both the patient and theircarer. Such opportunities need to be handledwith honesty and openness checking what theperson understands, how much they wish toknow and the extent to which other familymembers should be involved in their care.Exploring with the person their needs andpreferences is paramount and will preventunnecessary, inappropriate or prolongedtreatment.5.41 Having established this relationship andassessed their needs and preferences, this needsto be reviewed at regular intervals, which willtrigger the provision of other supportive andpalliative care such as carer information or outof hours support information.The role of the Clinical NurseSpecialist5.42 During the development of this strategypatients repeatedly told us of the vital role thatthe clinical nurse specialist (CNS) can play inimproving the experience of people living withand surviving cancer. Nurse specialists play ahugely valuable role across many differentelements of cancer patient management andsupport, carrying out a range of technical,informational, emotional and coordinationfunctions, including:●Familial risk assessment;

78 CANCER REFORM STRATEGY●●●●●Communication and information;Delivering treatment (such as chemotherapy);Psychological and emotional support forpatients and families;Providing continuity of care;Supporting and advising patients’ familiesand carers; andadvanced practitioners and independentprescribers.5.47 Commissioners and providers shouldtherefore give particular consideration tothe role of clinical nurse specialists. Goodcommissioners will use the peer reviewdata to benchmark their local CNS provisionagainst that of similar PCTs and take actionwhere the CNS workforce is found to beinsufficient.●Developing a post treatment plan.5.43 Over the past decade there has been asignificant expansion in the numbers of CNSs.However, there is more to do. For certain cancertypes, upwards of 20% of MDTs currently donot have CNS cover. These include some lung,urology, gynaecology and upper GI teams.Training to improve the patientexperience5.48 All those involved in delivering care andsupport to cancer patients need appropriatetraining. To deliver the vision set out in thischapter, it will be important to ensure thathigh quality training is available to equiphealthcare professionals to:5.44 Data indicate that substantial variation in thenumber of clinical nurse specialists available tosupport cancer patients at key points in the cancerpathway still exists across cancer networks. 29There can be a significant variation in theprovision of CNSs between cancer networks.This cannot simply be explained by geographicaldifferences in cancer incidence or patient flows.●●●Deliver information to patientseffectively;Work as part of an integratedmultidisciplinary team;Engage in appropriate ‘what if’conversations;5.45 A recent report by the Prostate CancerCharter for Action identified that there is alsosignificant variation in provision of CNSsbetween different tumours, resulting insignificant variations in the average caseload fora CNS. 30 For example, breast cancer andgynaecology nurse specialists have the lowestmean caseloads of 78 patients per whole timeequivalent CNS and lung cancer and urologynurse specialists have the highest meancaseloads at 123 and 132 patients per wholetime equivalent nurse respectively. 31 There areevident shortfalls in the number of clinical nursespecialists available to support patients withurological, lung and upper GI cancers.5.46 The CNS’ role may also need to adapt overtime to reflect new treatments and care settingsand changes in patient needs. Innovativesolutions to improving patient experience shouldbe explored such as the development of more●●To assess and manage/respond to theneeds of cancer survivors; andIn the case of CNSs, provide effectivepsychological support.5.49 Commissioners and providers will need torecognise the importance of this if they are todeliver improvements in the experience ofpeople living with and surviving cancer. Chapter11 sets out how we will approach trainingneeds in the future.Helping patients meet the costsof cancer5.50 Cancer can also significantly affect aperson’s finances. A Macmillan Cancer Supportsurvey in 2006 found that 70% of cancerpatients incurred travel costs. Based on theaverage number of trips, the cost per patientwas estimated to be £325. Other costs to

CHAPTER 5: LIVING WITH AND BEYOND CANCER 79patients include the cost of adjusting todisabilities caused by cancer or cancer treatment,prescription charges and the cost of home care.Estimates suggest that the cost of these tocancer patients could be around £200 a year.5.51 The impact of cancer on patients is also feltthrough loss of earnings. The Macmillan surveyindicated that 91% of cancer patients’ householdssuffer a loss in income and/or increased costs as adirect result of cancer. Among under 55s, sevenout of ten suffer a loss in household income, withan average fall of 50%.Access to benefits5.52 Depending on their individualcircumstances, cancer patients are entitled tothe full range of social security benefits,including daily living costs and housing costs.In addition, special provision is made forterminally ill patients who may have their benefitclaims processed more quickly. Special rules existfor some benefits to enable people who areterminally ill to be awarded higher amounts ofsome benefits. The parents of a child who isterminally ill can withdraw money from theChild Trust Fund without waiting until the childis 18. Those who care regularly and substantiallyfor a severely disabled person may also beeligible to claim a carer’s allowance.5.53 There are a number of ways in which theDepartment of Health is working to supportpeople in financial hardship with the costsassociated with their healthcare. The NHS LowIncome Scheme provides support for people infinancial difficulties with prescription charges,dental treatment, sight tests and glasses andtravel to receive NHS treatment through theHospital Travel Costs Scheme.5.54 What is clear, however, is that the majorityof cancer patients are not aware of the supportavailable to them. The 2005 National AuditOffice report found that 77% of cancer patientsare not given any financial supportinformation. 32 We must therefore do more tosupport patients facing financial pressures as aresult of their diagnosis. As part of integratedservices, commissioners should ensure thatall people affected by cancer are giveninformation about what financial help(including welfare benefits) is available andhow to access that help and their rightsunder the Disability Discrimination Act.Information prescriptions would be anappropriate way of delivering this andinformation on financial benefits will bemade available on the forthcoming nationalinformation pathways from 2008.Box 31: Accessing information on financial help for patientsMacmillan Cancer Support has been developing a model for delivering benefit information andadvice for people affected by cancer. This comprises:●●●●A network of local face-to-face advice services together with a national telephone helplinefor people who need specialist advice and advocacy;A suite of printed and on-line financial information resources;A web based self assessment tool to help patients and carers identify potential benefitentitlement; andA web based e learning module to raise benefit awareness among health professionals andhelp them signpost patients and carers to advice services more effectively.Macmillan aims to establish advice services in every PCT and has already developed 61 localservices across England in partnership with Citizens Advice and other specialist advice providers.Macmillan have estimated that in 2007, the combined impact of this model is that over£55 million in previously unclaimed benefits for patients and carers will have been identifiedand over 26,000 people helped with advice.

80 CANCER REFORM STRATEGYWork and cancer5.55 Cancer can have a profound impact onpeople’s ability to work. Each year around 90,000people of working age are diagnosed withcancer. Some of these will require protractedperiods of time off work due to the impact ofcancer and its treatment. Some may never beable to get back to work. However, for otherscontinuing to work helps them to cope withwhat they are going through. An individuallytailored approach is therefore needed.5.56 From 2005, cancer patients have beenprotected by the Disability Discrimination Actfrom the point of diagnosis. The Act providespeople with rights in a wide range of areas andplaces a duty on employers, providers ofservices, public authorities and transportproviders not to discriminate against disabledpeople and make reasonable adjustments forthem. In the area of employment, examples ofreasonable adjustments might be allowing anemployee with cancer time off for treatment orrehabilitation, or allowing them some flexibilityin working hours or a phased return to work.Occupational Therapists play an important rolein helping people return to their desiredoccupation. However further work is necessaryto increase employers’ awareness of the role ofcancer within the Act. Although 80% ofemployers are aware of the Act, only 19% knowthat cancer is classed as a disability. 335.57 A recent survey undertaken by Workingwith Cancer (a dedicated support group),Cancerbackup and the Chartered Institute ofPersonnel and Development highlighted theneed for better advice on work related issuesrelating to cancer and its treatment.Cancerbackup and Working with Cancer haveproduced guidance for employers andemployees. Guidance for carers will bepublished early in 2008.Surviving cancer5.59 Macmillan Cancer Support defines acancer survivor as someone who has completedinitial treatment and has no apparent evidenceof active disease, or is living with progressivedisease and may be receiving treatment but isnot in the terminal phase of illness, or someonewho has had cancer in the past.5.60 Survivors of cancer have a range ofphysical, psychological, social, spiritual, financialand information needs. At present servicesfrequently do not meet these needs for patientsor are poorly integrated. As many patients withcancer are elderly and have other medicalproblems, services for survivors need to be wellintegrated with those for other long termconditions. This is often best done by GPs andprimary care services.5.61 Problems relating to the after effects oftreatment for cancer can, in some cases, be longlasting and severely debilitating. Examplesinclude lymphoedema (swelling of a limb)following surgery and/or radiotherapy andbrachial plexopathy, which can cause pain andweakness in an arm. Macmillan Cancer Support,with funding from the Department of Health iscurrently running an innovative pilot programmeto assess how the needs for care of brachialplexopathy sufferers can best be met.5.62 Follow up by a hospital team has for manyyears been considered to be a standard part ofthe management of a cancer patient. Howeverpatients frequently undergo follow up, both at ahospital and in primary care, but without goodcommunication between the two, leading toduplication of effort and in some cases,confusion.5.63 Hospital follow up is undertaken withseveral objectives. These include:5.58 Commissioners should make sure thatinformation for people who work and havecancer is made available to patients as soonas they are diagnosed. Advice on returningto work should be available for all patientsof working age. Employers should beencouraged to support employees whowish to do so.●●●Detection and management of acutecomplications or side effects of treatment;Early clinical detection of recurrence;Detection of late effects of treatment such aslymphoedema or secondary cancers;

CHAPTER 5: LIVING WITH AND BEYOND CANCER 81●●Psychological assessment and support; andTo arrange surveillance investigations such asblood tests, CT scans and endoscopies.5.64 In practice, follow up consultations areoften brief, are conducted by relatively juniordoctors and may not meet patients’ needs.5.65 Alternatives to hospital follow up havebeen successfully introduced in some places andfor some cancer types. For example:●●Reducing the frequency of follow up insecondary care, meaning less visits tohospital;Transferring follow up to primary careaccording to predetermined protocols, sothat appointments can happen closer tohome;●●●●●●●●●Education, self care and expert patientprogrammes;Proactive case management, for example bytelephone contact;Drop in centres for peer support;Automated surveillance systems to ensuretests are undertaken at appropriate intervals;Patient reports of wellbeing using electronictechnology such as mobile phones;Provision of rehabilitation programmes;Psychological and spiritual support;Back to work support;Access to financial and benefits advice;●●Nurse led follow up (in hospital or primarycare); andReleasing patients from routine follow up,but giving them direct access back to theclinical team in relation to agreed “triggers”.5.66 Further detailed consideration now needsto be given to the services needed by survivorsof cancer. The National Cancer Director willlead a new National Cancer SurvivorshipInitiative to take this forward in partnershipwith Macmillan Cancer Support and othercancer charities. This initiative will requirecollaboration between clinicians working inprimary and secondary care, social care services,service users and patients and the voluntarysector. It will also link closely to ongoing workfor patients with other long term conditions.5.67 The National Cancer Survivorship Initiativewill consider a range of approaches tosurvivorship care and how these can best betailored to meet individual patients’ needs.These include:●Clinical follow up by hospital doctors, nursesand/or GPs (such as to detect recurrence andmonitor late effects of treatment);●●Nutritional advice; andOngoing support for carers.5.68 The National Cancer Survivorship Initiativewill also look in more detail at best practiceregarding care planning for survivorship. This islikely to include formal assessments of apatient’s needs and preferences for care at thecompletion of treatment and what role thepatient wishes to take in managing their owncare.5.69 As part of this work, Macmillan CancerSupport will host a think tank event,Making the Cancer Survivorship Agenda aReality, in March 2008. The key outcomes ofthe event will be: to identify key policywork streams and priorities; to agreestakeholder involvement for each of thepolicy work streams; and to produce areport outlining the outcome of the eventfor wider circulation. The event will beco-chaired by the National Cancer Directorand the CEO of Macmillan Cancer Supportand will involve patients, healthprofessionals, the voluntary sector,academics, research experts, internationalexperts and the government.

82 CANCER REFORM STRATEGYMeasurement of patients’experience of care5.70 As we place a new emphasis on thequality of experience reported by people withcancer, it will be important that we are able tomeasure progress, tracking improvements in thequalitative as well as quantitative aspects ofcancer care.5.71 Large scale surveys of cancer patientsundertaken in 2000 and in 2004 by theDepartment of Health and the National AuditOffice demonstrated considerable improvementsin relation to several aspects of patientexperience. However, the 2004 survey alsodemonstrated that much more needed to bedone. Prostate cancer patients continued toreport a worse experience of care than thosewith breast, bowel and lung cancers andpatients’ experience of services in Londonremained less positive than elsewhere.5.72 These large scale surveys demonstrate thatcancer patients are prepared to completedetailed questionnaires which provide valuablesnapshots about the experience of patients withdifferent types of cancer and in different partsof the country. The surveys have not, however,been major drivers of local service improvement,probably because there was little or no sense oflocal ownership of the process. In addition, littledirection and support was given in how thefindings could be used locally.5.73 We therefore want to collect regularinformation on patients’ experience and usethis information locally to drive serviceimprovements. A new NHS Cancer PatientExperience Survey Programme will beestablished and surveys will be conductedannually. To take this forward an expertgroup, including patients, will be convenedto design the technical specifications.A national contract will then be let forthe collection, management and analysisof cancer patient experience surveys.This initiative will take full account of theDepartment of Health strategy review ofcustomer experience information, which is beingundertaken by PricewaterhouseCoopers and willbe published in early 2008. The expert groupwill also consider the value of surveying carersof cancer patients.Figure 9: Improvement in Patients’ Reports of their care between 2000 – 20042000 2004Patients waiting less than one month to be seen by a specialist 70% 80%(irrespective of whether they were referred urgently)Patients receiving written information at the time of diagnosis 45% 61%Patients finding explanations of what was wrong with them very easy to understand 62% 68%Patients fully understanding the purpose of the treatment 82% 86%Patients who were given completely understandable explanations about side effects 63% 76%Patients who were always treated with dignity and respect 79% 87%Patients reporting that there were always enough doctors on duty 80% 84%Patients reporting that there were always enough nurses on duty 75% 81%Patients reporting confidence and trust in all of their doctors 87% 88%Patients reporting confidence and trust in all of their nurses 79% 81%Patients reporting that staff had done everything they could to relieve pain 81% 85%Patients reporting a lot of confidence in the doctor seen at their most recentoutpatient visit 68% 84%

CHAPTER 5: LIVING WITH AND BEYOND CANCER 835.74 The survey programme will enable theassessment of whether patients feel supportedthroughout their cancer journey, the extent towhich their care is coordinated and more robustmeasurement of the impact that CNSs have onpatient care.5.75 Reliable measurement of the experience ofcare for patients managed by different teamsand hospitals will allow:●●●●Patients to make informed choices abouttheir care;Commissioners to ensure improvements incare through strong contract management;Local service providers to identify whereimprovements are most needed; andLocal services to compare their performancewith other services.5.76 Throughout the development of thisstrategy experts have told us that commissionersand providers have sometimes found it difficultto give sufficient weight to actions which willimprove patient experience in comparison withdemands for new technologies. The NHS CancerPatient Experience Survey Programme willprovide commissioners with a mechanism totrack the extent to which improvements arebeing delivered in this area. Chapters 8 and 9set out how they may wish to use thisinformation to work with providers to deliverimprovements.

84Chapter 6:Reducing cancer inequalitiesChapter Summary●●●●Inequalities in cancer outcomes are experienced by a range of different groups in societyincluding socio economically deprived groups, black and minority ethnic groups, older oryounger people, men or women, people with disabilities, people from particular religions orwith particular beliefs and gays, lesbians or bisexuals. Inequalities may vary according to thetype of cancer as well as other factors such as location;Although the inequalities gap between the most deprived groups and the generalpopulation has got smaller, more needs to be done to tackle inequalities as experienced byall these different groups;Priority should be given to action to reduce smoking among groups with a high smokingprevalence and to increase awareness of the risk factors and symptoms for cancer amonggroups with low awareness; andWe will begin a National Cancer Equality Initiative, bringing together key stakeholders fromthe professions, voluntary sector and academia to develop research proposals on cancerinequalities, test interventions and advise on the development of wider policy.Introduction6.1 The Cancer Reform Strategy has beensubject to an Equality Impact Assessment whichshows that there will be no overall adverseeffect on inequalities as a result of the measuresfor cancer that we are introducing. However, wewant this strategy to go much further than that,achieving a substantial reduction in inequalitiesin cancer. One of the key aims of the CancerReform Strategy is to reduce inequalities incancer incidence and increase access to highquality cancer care and cancer outcomes.6.2 Inequalities may be experienced by a rangeof different groups within society. These include:●●Socio economically deprived groups;Black and minority (BME) ethnic groups;●●●●Men or women;People with disabilities;People from particular religions or withparticular beliefs; andGays, lesbians or bisexuals.6.3 There are multiple potential sources ofinequality relating to cancer, which can impacton incidence, survival, mortality, patientexperience or quality of life. These include:●●●Exposure to infections linked to cancer;Genetic risk of developing cancer;Awareness and attitude to lifestyle riskfactors for cancer;●Older or younger people;●Uptake of prevention and screening services;

CHAPTER 6: REDUCING CANCER INEQUALITIES 85●●Access to diagnostic and treatment services;andProvision of information and support.psychological support, assistance with gettingback to work or claiming the financialsupport to which they are entitled, will helpmore economically deprived groups in society.6.4 This chapter outlines how the differentannouncements and recommendations in theCancer Reform Strategy will impact oninequalities and also sets out an overview ofsome of the major causes of cancer inequalitytogether with recommendations for local actionto reduce these inequalities.The impact of the Cancer ReformStrategy on inequalities6.5 The Cancer Reform Strategy includes anumber of actions which should help reduceinequalities:6.6 However, we also recognise that some ofthe measures we are taking may, at least initially,widen inequalities:●●Measures to improve awareness ofprevention messages as well as the signs andsymptoms of cancer are likely to bedisproportionately acted upon by theinformed and articulate;Expanding screening will benefit everyonewho is eligible, but groups with lower levelsof uptake will experience less benefit; and●●●●●●Action on smoking will particularly benefitgroups in society with higher rates ofsmoking prevalence, such as manual workersand some BME communities;Measures to ensure faster referral anddiagnosis for people where cancer issuspected will help those who may be lessinformed about cancer signs and symptoms;Reducing cancer waits will enable fastertreatment for all patients;Expanding radiotherapy capacity will reduceinequalities in the availability of a treatmentwhich benefits over half of all patients withcancer;A commitment that as a default positionnew cancer drugs and significant newlicensed indications will normally be referredto NICE and to ensure that NICE appraisalguidance is available as early as possible;Improved information and a new focus onimproving the experience of cancer patientswill ensure that all patients are given theappropriate information, advice and supportthroughout their cancer journey; and●Affluent and articulate people are more likelyto make immediate use of information aboutthe performance of hospitals.Further national action to tackleinequalities6.7 A major challenge in reducing inequalities incancer is the lack of evidence about the extentto which different forms of inequalities exist,what causes them and what interventions willbe most effective in addressing them.6.8 In recognition of this challenge we willbegin a National Cancer Equality Initiative,bringing together key stakeholders fromthe professions, voluntary sector, academiaand equality groups to develop researchproposals on cancer inequalities, testinterventions and advise on thedevelopment of wider policy. The NationalCancer Equality Initiative will initiallyfocus on:●●Optimising data collection to enhanceour understanding of the inequalitiesthat exist;Promoting research to fill gaps in theevidence; and●Greater help for people who have survived orare living with cancer, including better●Spreading good practice.

86 CANCER REFORM STRATEGY6.9 The Department of Health will alsowork through the National Cancer EqualityInitiative with Strategic Health Authorities(SHAs) and Primary Care Trusts (PCTs) toagree challenging goals for reducing cancermortality in every cancer network areaby 2012. These goals will pay particularattention to tackling the different forms ofinequality set out in this chapter, as ameans to reducing overall mortality. Theprogress made by each PCT, cooperatingthrough the cancer network, in meetingthese goals will form an important part ofour ongoing action to reduce cancerinequalities.6.10 The National Audit Office is funding adedicated post in the Cancer Action Team todrive forward equity issues. This person willwork closely with the National Cancer Directorin developing the National Cancer EqualityInitiative.6.11 The Department of Health will alsocontinue to encourage innovation intackling inequalities through its Section 64grant programme. Currently 36 percent ofgrants on cancer programmes address equalityissues. 346.12 The UK National Screening Committee isconducting an equality review within thenational screening programmes, including thosefor cancer. As a result of this review, the UKNational screening Committee will considerwhat initiatives could be undertaken to improveaccess to screening in vulnerable populations.Types of cancer inequality andrecommendations for local action6.13 Local action will also be necessary totackle inequalities. As part of the measureswe are introducing to ensure strongercommissioning, PCTs, in association withtheir cancer network, will wish toundertake a local equality impactassessment and take appropriate steps toaddress local issues.6.14 This assessment should include assessingscreening coverage rates amongst groups withparticularly poor cancer outcomes and settingout plans to improve screening coverage.6.15 If inequalities in cancer are to be reduced, itwill be important to understand the nature of theinequalities that different groups face. Furtherresearch into this will be a priority but goodcommissioners should take into account theexisting evidence, which is summarised below.Socio economic deprivationand cancer6.16 Socio economic deprivation has a markedimpact on cancer outcomes. Cancer mortality ismore than 15% higher in ‘spearhead’ PCTs thanthe national average. Although mortality fromcancer is falling across the country as a wholeand in spearhead PCTs, the gap remains wide.6.17 The increased mortality in deprived groupscan largely be attributed to:●●Higher smoking rates. Research has shownthat the substantial social inequalities in adultmale mortality during the 1990s were due tothe effects of smoking. Stopping smokingcould eventually halve this difference. 35Smoking leads to higher mortality rates frompoor prognosis cancers such as lung andoesophagus; andLow awareness of cancer and the benefits ofearly detection, leading to lower uptake ofscreening opportunities and later presentationwith symptoms when cancer develops. 366.18 The actions set out in chapters 2 and 3 ofthis strategy are intended to help address theseunderlying causes of inequality.6.19 The government has a Public ServiceAgreement ‘to reduce inequalities in healthoutcomes by ten percent by 2010 as measured byinfant mortality and life expectancy at birth’. Forlife expectancy this means ‘by 2010 to reduce byat least ten per cent the gap between the fifth oflocal authority areas with the lowest lifeexpectancy at birth and the population as awhole’. Reducing inequalities in cancer will play amajor part in achieving this goal. The Departmentof Health will continue to monitor the gap in

CHAPTER 6: REDUCING CANCER INEQUALITIES 87mortality, as well as differences in one and fiveyear survival.●Liver cancer incidence is higher amongBangladeshis and Chinese.Race and cancer6.20 The links between race and cancer arecomplex and differ between different black andminority ethnic populations. Our understandingof these links has been hampered in the past bypoor recording of ethnicity within the NHS, butthis is now improving.6.21 It is important to recognise that manyBME populations in England have a youngerage profile than the white British populationand have not, therefore, yet reached the agewhen cancer is most common. However, theneeds of different generations withincommunities may be very different and willneed to be planned for.6.22 The incidence of cancer varies betweenethnic groups. For example, compared to thegeneral population:●Prostate cancer incidence is higher in AfricanCaribbean men;6.23 Some of these differences are due tolifestyle factors and exposure to infections.Others may be caused by genetic factors.6.24 Different BME communities will havedifferent needs and it is important that apersonalised NHS is able to meet them. We setout in the Department of Health’s Single EqualityScheme the actions which we will be taking toensure that the NHS is equipped to meet theneeds of cancer patients from differentcommunities, including:●●●Developing a model for best practiceguidance within cancer networks by 2009;Improving ethnic monitoring of cancerpatients through cancer registries by 2008;Providing a forum for stakeholders workingwith BME communities and charities to sharebest practice and evaluation of projectsundertaken by 2008; and●Mouth cancer incidence is higher amongstSouth Asians; and●Providing a range of screening leaflets invarious languages and audio visual aids.Box 32: Providing culturally appropriate informationPeople from BME communities come later to diagnosis, are under-represented in clinical trials andare less likely to access palliative care services. Some cancers are more common among particularBME groups. Cultural, religious and social factors affect the delivery of information and treatment;cancer may be seen as a punishment, an infection, or simply not exist as a concept, there beingno word for cancer in some languages. There may be a distrust of “western” medicine and areliance on healing through prayer or traditional medicines. Over one million people in the UK donot have English as a first language and many struggle to receive complex information on cancer,even when they speak English adequately for day-to-day purposes.Cancerbackup’s helpline allows people to speak to a specialist cancer nurse in over 100languages through an interpreter, with direct access lines for speakers of the twelve mostcommon community languages. It has produced written and videotaped cancer information inTurkish, Cantonese and six Asian languages and holds a database of resources in otherlanguages. Medical and community advisers have compiled answers to 120 culturally-sensitivequestions about cancer frequently asked by BME communities. These are posted onCancerbackup’s main website and available to health professionals. The specialist cancerinformation nurses in London and at Cancerbackup’s local information Centres work withspecially trained interpreters to undertake outreach work with local communities.

88 CANCER REFORM STRATEGY6.25 Patient experience surveys have shownthat BME groups, in general, report a worseexperience of treatment and care. The actionsset out in chapter 5 are intended to helpaddress this.6.26 As we move forward it will be importantto assess the impact of newer trends inmigration, ensuring that cancer services areequipped to meet the needs of differentpopulations. For example, many migrantcommunities from Eastern Europe have higherrates of smoking which may require specificlocal action. Good commissioners will considerthe needs of all the groups they serve anddevelop strategies to address these.Age and cancer6.27 Cancer predominantly affects older people.Fifty one percent of all cancer diagnosed is inpeople over 70 years old and more than threequarters of all cancer deaths occur in peopleaged over 65 years.6.28 The link between increasing age andincreasing risk of developing cancer appears tobe poorly understood by the public. For examplea recent study by the NHS Cancer ScreeningResearch Group found that over 50% of womenwrongly believe that the risk of breast cancerdoes not vary with age, with only one per centcorrectly believing that the oldest women are atgreatest risk. 37 Lack of awareness that they arestill at risk of developing breast cancer appearsto be one of the major reasons why olderwomen with breast cancer present later andwith more advanced disease than youngerwomen.6.29 The information we will collect onawareness, clinical outcomes and patientexperience will be a powerful tool for identifyingareas where further work is necessary if olderpeople are to benefit from the best possiblecancer services.6.30 There is some evidence that older peoplereceive less intensive treatment than youngerFigure 10: Proportion of patients in England and Wales in the various age bands whoreceived any active anti-cancer treatment7060Proportion (percent)50403020100-54 .55-5960-6465-6970-7475-7980-8485+Age bandsData from the second annual report of the national lung cancer audit programme

CHAPTER 6: REDUCING CANCER INEQUALITIES 89people even when they are fit enough to do so.Evidence recently published in the British Journalof Cancer suggests that, even after adjusting fortumour type, when compared to youngerwomen older women are less likely to receivestandard management for breast cancer, suchas radiotherapy treatment. 38 Similarly, datagathered from the national lung cancer auditsuggests that older people are less likely toreceive radical treatment (Figure 10) 39 . Experts inthe care of older people will be invited to jointhe National Cancer Equality Initiative to adviseon this.6.31 Most clinical trials focus on patients underthe age of 65, meaning that less data areavailable on the efficacy of treatment in olderpeople. We believe that later stage trials shouldbe conducted in groups who would be mostlikely to be treated with the medicines inquestion. We will work with the NCRN todevelop ways of encouraging more clinicaltrials to include older people. We will alsoencourage medicines’ regulators andindustry to work together so that the useof age as an exclusion criterion in cancerclinical trials is avoided wherever possible.6.32 In the meantime, we do not believethat age should be used as a barrier totreatment. The assumption should be thatolder patients should receive the same levelof treatment. The only acceptable criteriafor not giving a clinically appropriate andcost effective treatment should be poorpatient health or a patient themselvesmaking a choice not to receive furthertreatment. We will explore ways of makingthis more explicit when guidance is issuedon interventions where clinical trials mayhave excluded older people.6.33 The majority of children have theopportunity to participate in clinical trials andthis should continue. However, the situation isless impressive for teenagers and young adults.Over 70% of attendees at a recent TeenageCancer Trust conference reported that they wereBox 33: Age appropriate servicesThe Christie Teenage Cancer Unit is one of a number of units in the country, supported by theTeenage Cancer Trust, that cares specifically for teenagers & young adults with cancer, a distinctgroup with unique needs that differ from both children and adults. The unit is aimed at 16-24year olds and currently has 13 beds plus a day service. It provides a hospital environment that isappropriate to young people including internet access per bed, allowance of mobile phones andaccess to music equipment, Sky TV etc. There is also access to space for socialising and space tomeet the needs of families, siblings and carers.A diagnosis of cancer in this age group results in complex psychosocial issues for both thepatients and their families/carers. Young people at the Christie are therefore cared for by staffwith extensive knowledge and expertise in cancer in this age group – staff with knowledge of ayoung person’s cancer journey, typical reactions of young people facing cancer, young people’scoping mechanisms, excellent communication/interpersonal skills and the ability to recognizepsychological problems/dysfunction in young people to ensure early/timely intervention.Extensive support services are also offered led by a Support and Activity Coordinator. Supportgroups are available to young people throughout treatment; from diagnosis and for many yearsafter treatment. These groups ensure that young people remain socially motivated, continue tofunction as young people, have access to their peer group, support from other patients and aidthe transition process back to ‘normality’ once treatment is completed. There is also a teenage &young adult community liaison post to bridge the gap between children’s and adult existingcommunity services/teams and to offer expert advice regarding care for this group to existingcommunity staff and ensure that young people with cancer are offered support at home whilstundergoing cancer treatment. In addition the unit has a lead teenage & young adult nurse todrive and coordinate the services offered.

90 CANCER REFORM STRATEGYnot offered the chance to be treated in clinicaltrials. Implementation of the ImprovingOutcomes Guidance on Children & YoungPeople with Cancer should ensure that children& young people, are treated in centres where acomplete portfolio of relevant trials is supported.6.34 Children and younger people who developcancer will have very different needs and it willbe important that care for them is provided inan age appropriate setting. For teenagers andyoung adults with cancer, it is estimated that70% are not treated in a setting appropriate fortheir age. Implementation of the Children andYoung People’s Improving Outcomes Guidance(IOG) will therefore require provision of asufficient number of dedicated age appropriateservices to ensure that every network has aservice to refer to. More than one service maybe needed in high density populations. Goodcommissioners will ensure that services are ageappropriate for the population they serve.Gender and cancer6.35 Some cancers are gender specific (such asprostate and testicular for men, ovary anduterus for women) and others affect one genderfar more than the other (such as breast cancer).However, for the ten commonest cancers whichaffect both men and women age standardisedmortality rates are in every case higher in men.6.36 The reasons for the differences in mortalityrates between men and women are not fullyunderstood. In some cancers, such as lungcancer and oesophageal cancer, differences insmoking prevalence play a large part. In someother cancers, it may be due to laterpresentation by men. In melanoma for example,the incidence is higher in women, possiblybecause of the greater over exposure tosunlight, but death rates are higher in men,perhaps due to presentation at a moreadvanced stage.6.37 In 2006, a symposium organised by theMen’s Health Forum and chaired by the NationalCancer Director discussed the issues aroundcancer and gender. The event highlighted thatthere are still many cancer types for which thereason for higher incidence and mortality in menis not known and that this higher incidence maybe the result of unidentified risk factors orgeneral biological predisposition. 40 It is clear thatmore research is needed if we are to fullyunderstand how gender impacts on cancer.6.38 The Symposium also highlighted that therange of settings in which men are offeredadvice, information and routine health checksshould be expanded from traditional primaryand secondary care settings, for example intothe workplace.Figure 11: Age standardised mortality per 100,000 populationMenWomenLung 55.8 28.4Colorectal 24.0 14.7Oesophagus 13.0 5.1Stomach 10.9 4.3Pancreas 9.6 7.3Bladder 9.1 3.0Non-Hodgkin’s Lymphoma 7.5 4.7Leukaemia 6.8 4.3Kidney 6.1 2.3Melanoma 2.7 1.9

CHAPTER 6: REDUCING CANCER INEQUALITIES 91Figure 12: Comparison of incidence and mortality of melanoma in men and womenin EnglandMortality(2001-03)MenWomenIncidence(2001-03)0 1000 2000 3000 4000Disability and cancer6.39 For people with disabilities, cancer canpose particular challenges. For example,although people with learning disabilities have asimilar overall risk of cancer to the rest of thepopulation, they nonetheless have a higher riskof some cancers such as cancer of the gallbladder and thyroid gland and leukaemia, but alower risk of prostate, lung and urinary tractcancers. 416.40 There is also evidence that uptake ofscreening is low amongst people with learningdisabilities. Figures for breast screening in 1998showed 43% average uptake for those womenwith learning disabilities compared to 76% forwomen overall. For cervical screening the figureswere three per cent and 85% respectively. 42There are also distressing stories of people withlearning disabilities getting poor access toservices when they do have symptoms of cancer.

92 CANCER REFORM STRATEGYReligion or belief and cancer6.41 It can sometimes be difficult to separateout factors relating to religion or belief fromother cultural and socioeconomic factors.However, attitudes to cancer may differ betweenreligions, potentially contributing to variations inuptake of screening, stage of presentation andattitudes towards treatment.6.42 Stronger commissioning will involveplanning services which are appropriate to theneeds and culture of local communities.Commissioners should therefore take intoaccount religious beliefs when designingservices.Sexual orientation and cancer6.43 Homosexual and bisexual populations canhave elevated risk factors for some cancers. Forexample, smoking rates amongst homosexualand bisexual populations are much higher (41%)than the national average (24%). Homosexualmen have a raised risk of anal cancer, related toinfection with the Human Papilloma Virus (HPV).They also have a higher rate of Kaposi Sarcomaand non-Hodgkin’s Lymphoma related toHIV/AIDS. Lesbians may be at higher risk ofbreast cancer as they are less likely to have theprotective effect of pregnancy. There is alsoevidence to suggest that they are less likely totake up screening 44 .6.44 PCTs with high homosexual, lesbian andbisexual populations may wish to considertargeted awareness-raising initiatives to addressthese issues.

93Chapter 7:Delivering care in the most appropriate settingChapter Summary●●●●●New models of care can bring significant advantages to patients and release resources forother developments;PCTs will wish to ensure that GPs have appropriate and timely access to diagnostic tests.This will reduce delays in diagnosis and should reduce unnecessary referrals to hospital;Some specialised diagnostic tests should be provided at cancer network level;Cancer inpatient care can be streamlined, with benefits for patients and the NHS.Commissioners will wish to give this high priority; andAn End of Life Care Strategy will be published in 2008. In the meantime PCTs will wish toapply lessons learned from the baseline reviews undertaken in 2007/08 to commissioningdecisions for 2008/09.Introduction7.1 Much of the focus in the past decade hasbeen on reducing hospital waits and ensuringthat patients have access to specialists with thenecessary expertise to deliver high quality cancertreatment. To do this, new models of care havebeen widely introduced across the countrythrough:●●●Rapid access clinics in District GeneralHospitals;Multidisciplinary teams, some of which are inDistrict General Hospitals and some in cancercentres; andEnsuring that complex treatments areundertaken by specialist teams.including inpatient care; support following thecompletion of primary treatment; managementof recurrence and late-effects of cancertreatment; and end-of-life care.7.3 Service models need to be developed whichmeet the needs of patients at each step in theircare pathway and which are cost-effective.As acknowledged in the interim report of theNHS Next Stage Review, patients rightly expectthat their services are safe, fair, effective andpersonalised. 457.4 This chapter sets out some of the changesto cancer service models that commissionersshould consider. These are:●Increasing access to diagnostics;7.2 The Cancer Reform Strategy looks morewidely across the care pathway, encompassing:investigation prior to diagnosis; full assessmentand treatment planning once the diagnosis ofcancer is established; primary treatment,●Improving service models for inpatient care,in particular minimising lengths of stay inhospital and preventing unnecessary hospitaladmissions;

94 CANCER REFORM STRATEGY●●Ensuring multidisciplinary team working; andProviding more choice in end of life care.7.5 A theme of many of these service models isto provide care outside of hospital settingswhere possible, with efficient access to hospitalservices when necessary. Most cancer patientswant to receive as much of their care as possibleclose to home. However, they also recognisethat they may have to travel to see a specialistteam to receive the highest possible quality ofcare, especially for complex investigations ortreatments.7.6 In all cases, commissioners shouldensure that any satellite services developedoutside hospitals, whether in diagnostics,radiotherapy or chemotherapy, are fullyintegrated with other services within thecancer network. Good links will ensure thehighest standards of clinical governance,standardised protocols and a streamlinedpathway for patients navigating betweenout-of-hospital and hospital care.Access to diagnostics7.7 Several of the expert groups which advisedon this strategy agreed that increasing access todiagnostic tests was an important need incancer services. Diagnostics are important atfour levels:●●●●To help GPs quickly and conveniently excludea cancer diagnosis in people whom theyjudge that the chance is low that theirsymptoms are due to cancer;To ensure that patients with a high chance ofhaving cancer are given the right high-qualityspecialist diagnostic tests to diagnose theircancer quickly;To support the monitoring and managementof cancer patients throughout theirtreatment, for example to assess how atumour is responding to a particulartreatment; andTo detect or exclude recurrence for patientswho are in remission.Increasing access to diagnosticsfrom primary care7.8 As discussed in chapter 3, GPs and primarycare professionals should have quick and easyaccess to relevant diagnostic tests to excludecancer in patients at low risk.7.9 GPs have for many years had direct accessto blood tests and to simple imaging tests suchas chest x-rays. In some parts of the country GPsnow have access, subject to agreed protocols, toa much wider range of diagnostic tests whichcan help to confirm or exclude cancer. Theseinclude:●●●●Endoscopy services;Non-obstetric ultrasound;CT scanning; andMRI.7.10 Increasing use of independent diagnosticsproviders has helped improve capacity for MRI,with approximately 90,000 scans per anumbeing provided to NHS patients by AllianceMedical through the term of the MRI fastrackcontract.7.11 However, timely access to such services isnot universal. Patients who would benefit frominvestigation may either not be investigated atall or may be referred to secondary care just toget an investigation done. As a result patientsare almost certainly under investigated forcancer, but over-referred. Under investigationcan lead to delayed diagnosis with catastrophicresults for individual patients.7.12 A good Primary Care Trust (PCT)will wish to ensure that primary careprofessionals have appropriate and timelydirect access to diagnostic tests. They maywish to take account of good practicerecommendations developed by the RoyalColleges of Radiologists and GeneralPractitioners. 46 The PCT will also wish toconsider whether these diagnostic facilitiesshould be provided in acute generalhospitals or in community settings.

CHAPTER 7: DELIVERING CARE IN THE MOST APPROPRIATE SETTING 957.13 GPs with a special interest in cancer maywish to develop and offer particular diagnosticservices under practice based commissioning.During the development of this strategystakeholders told us that models which maydevelop and will need to be evaluated include:●Community-based Prostate Health Clinics(see Box 35 below); and● Genetics services (see chapter 2).Specialist diagnostic services7.14 If a GP suspects that a patient has a highchance of cancer, the patient should be referredto a specialist diagnostic unit, linked to an MDTunder the two week wait standard. Whereclinically appropriate, these units should offer allnecessary diagnostic tests in one visit, with sameday results. These units would provide the latesttechnology and be staffed by experts ininterpreting cancer diagnostic information.This would ensure continuity of care andfacilitate multidisciplinary working.7.15 For some cancers highly specialiseddiagnostic facilities are required either fordiagnosis (such as molecular pathology) or fordetermining the extent of disease (such as PET-CT scanning). These services may require highlevels of expertise for accurate investigation andin some cases, expensive technology. It will notbe appropriate for all hospitals to provide theseservices. The Leeds haematological diagnosticservice provides a model for the delivery ofcomplex diagnostic services for a population ofalmost four million people (see box 36 overleaf).7.16 The Leeds haematological service has alsopioneered a patient-centred monitoring servicein response to the increased number of patientsdiagnosed with haematological malignancy notrequiring immediate treatment. The service iscommunity-based using primary carephlebotomy and central haematological reviewof laboratory parameters, with symptomsidentified by a patient self-assessmentquestionnaire. This approach is effective atidentifying patients in need of treatment andresults in improved access and convenience withless travel for patients and significantly reducedwaiting times. Patients are supplied with copiesof all relevant information and have access totelephone advice empowering them to managetheir condition.Box 35: Community-based Prostate Health ClinicsDue to the complexities involved in diagnosing significant prostate cancers, one suggestedmodel is that men should receive advice and support on prostate health issues at dedicatedcommunity-based prostate health clinics. Decision advisers would help men at the followingpoints in the pathway:●●●●Men without symptoms considering having a PSA test or equivalent;Men with urinary or other potential symptoms of prostate cancer;Men considering having a biopsy for prostate cancer following a PSA test; andMen diagnosed with benign prostate disease.Decision advisers could be clinical nurse specialists (CNSs) on a dedicated or outreach basis,GPs with a special interest in prostate cancer, community based specialist urologists or otherappropriately trained practitioners. Access to prostate health clinics would be via GP referral ordirect access for men concerned about their prostate health.Improved support for men in making decisions about further investigation or treatment wouldnot be a form of rationing, but rather a way of ensuring that men have the best possibleinformation and support when making difficult decisions. Improved support for men will ensurethat more appropriate referrals for biopsy or further care will be made, reducing unnecessaryinterventions and complications, saving significant levels of NHS resources.

96 CANCER REFORM STRATEGYBox 36: The Leeds haematological malignancy diagnostic serviceAlthough each of the individual haematological malignancies is relatively rare, collectively theyaccount for about ten percent of all cancers. Accurate diagnosis and classification ofhaematological malignancy is clinically critical and determines the selection of treatment.This may range from observation only through to intensive chemotherapy and bone marrowtransplantation. Evidence from published studies, audits and clinical trial reviews suggests thatthere is a problem with existing approaches to diagnosis with a misdiagnosis rate of lymphoidmalignancies of 10-20% leading to adverse clinical outcomes.Accurate diagnosis of haematological malignancy depends on the use of a range of diagnosticmethods including immunophenotyping, morphological examination and molecular genetics.In many service models these diagnostic techniques are provided by several different pathologydepartments. As well as potentially wasteful duplication of resources, this model does not exploitthe power of cross validation of the results of individual diagnostic tests in ensuring the accuracyof the final diagnosis or provide a formal mechanism to resolve apparently contradictory resultsgenerated in different laboratories. The Haematological Malignancy Diagnostic Service (HMDS),based in Leeds Teaching Hospitals, provides a specialist diagnostic service for HaematologicalOncology in North and West Yorkshire and Humberside. The laboratory includes the full range ofdiagnostic technologies and this allows the use of integrated investigative protocols that exploitthe strength of individual techniques to ensure the quality and accuracy of the finalinterpretative report. By serving a large population of almost four million, HMDS has been ableto bring together the specialist expertise and capital resources that are required to costeffectively provide this type of service. The concentration of specialist staff and resources ensurea fast specimen reporting time and 24 hour availability.The basic concepts and technology underpinning the diagnosis and treatment of haematologicalmalignancy are changing rapidly. As a fully integrated laboratory, embedded in the clinicalnetwork, HMDS can respond quickly to clinical innovation and promote development of theclinical service as a whole. This is difficult for laboratories based around a single techniqueserving a wide range of clinical specialities. As the sole diagnostic laboratory serving a largenetwork HMDS is able to act as a hub for clinical data collection on which effective audit andaccurate epidemiology are based.7.17 PCTs working together across a cancernetwork will wish to consider whichdiagnostic services should be centralised,taking account of National Institute forHealth and Clinical Excellence (NICE)Improving Outcomes Guidance. They willalso wish to consider what follow upservices could be provided closer topeoples’ homes, but with appropriatespecialist monitoring.Inpatient care7.18 Inpatient care for patients diagnosed withcancer accounts for around twelve percent of allinpatient bed days in England. Cancer patientsoccupy a total of around 5.3 million bed days ayear. This equates to around 14,550 cancerpatients being in a hospital bed on any one day.A typical cancer network servicing a populationof 1.5 million would therefore have around 440cancer patients in hospital at any one time.7.19 Over the past eight years inpatientadmissions for cancer have risen by 25% fromaround 625,000 to 785,000 per annum. Mostof this increase relates to emergency inpatientepisodes, which have increased by 47%, whileelective inpatient episodes have increased by8.6%. A large proportion of emergencyadmissions for cancer are managed byphysicians in general medicine or geriatricians.Over the same time period elective day caseepisodes have risen by 50% (from around520,000 per annum to around 780,000 perannum).

CHAPTER 7: DELIVERING CARE IN THE MOST APPROPRIATE SETTING 977.20 The increase in cancer inpatient admissionshas to a certain extent been offset by areduction in average lengths of stay. Overall beddays have risen by one percent per annum.Elective bed days have reduced by around onepercent per annum, with emergency bed daysrising by around 2.5% per annum.7.21 Given the projected increase in incidenceof cancer and the age profile of cancer patientsit can be anticipated that bed utilisation forcancer will continue to rise year on year, unlessappropriate action is taken.7.22 Going forward, cancer incidence inEngland is projected to increase by 25% overthe next 15 years, mostly due to the anticipatedeffects of population growth and ageing. 47Department of Health analysis suggests that,unless actions are taken to reduce lengths ofstays and unnecessary admissions, inpatientcosts for cancer are expected to increase by24% in the same period. The increase willdifferentially affect certain groups. For example,inpatient costs for the over 70s are expected toincrease by 37% compared to 13% for theunder 70s.7.23 In order to keep inpatient costs at currentlevels, it is estimated that average lengths ofstay would need to reduce by about a third, oralternatively, emergency admissions per cancerpatient would need to reduce to almost 50% oftheir current levels. These are ambitious aims,but, as the next section demonstrates, they arewithin the possible scope for efficiency gainssuggested by numerous different studies oninpatient care.7.24 Figure 13 below shows how inpatient beddays vary by cancer type. Admissions for cancerare spread across many different specialities andvary between tumour groups. Around 60% of allcancer bed days relate to non-elective admissions.Evidence of opportunities toimprove inpatient care7.25 A total of 40 pilots, led by the CancerServices Collaborative Improvement Partnership,are now underway within the NHS looking atways of improving different aspects of cancerinpatient care. The seven pilots in the first waveof this programme have been highly successful(see examples in Boxes 37 and 39) and the morerecent pilots are showing great promise.Figure 13: Bed occupancy by cancer type 48HaematologicalUrologicalLower GILungUpper GIBreastGynaecologicalOther0 200,000 400,000 600,000 800,000 1,000,000 1,200,000 1,400,000Bed daysElectiveEmergency

98 CANCER REFORM STRATEGY7.26 In the year leading up to the CancerReform Strategy, the Cancer ServicesCollaborative Improvement Partnership, CancerAction Team and the NHS Institute haveconducted a number of studies and pilotslooking at ways to improve inpatient care andthis work has identified huge potential toimprove the quality and productivity ofinpatient care for cancer and reduceunnecessary hospital use.7.27 In particular, this work has providedvaluable evidence of three ways in whichinpatient services can be improved for cancer:●●●Minimising lengths of stay in hospital formedical and surgical admissions;Preventing unnecessary hospital admissions;andBringing services together in an ambulatorycare model.7.28 A study by the Cancer Action Team incollaboration with Aptium Oncology hasrevealed that patients hospitalised for cancerin this country would have been manageddifferently in the US, with lower bed utilisation.Cases were reviewed to establish whetherinpatient stays could be reduced in length oravoided altogether. It was suggested that hadthe Aptium ambulatory care model beenapplied, over one-third of hospital admissionscould have been avoided and over one-third ofstays made shorter.7.29 Many medical issues associated withcancer do not require hospital admission andcan be managed in other ways. ‘Ambulatorycare’ is care delivered on an outpatient basis.Many medical investigations can be performedon an ambulatory basis, including blood tests,x-rays, endoscopy and some biopsy procedures.7.30 When designing and planning servicemodels for cancer, this model of care presentssignificant opportunities. Outpatient centres couldbring together assessment units, diagnosticservices and treatment services, together withsupportive and palliative care such as symptomcontrol and psychological and social care support.7.31 Advances in drug therapies mean thatmany cancer patients no longer have to stay inhospital as inpatients. With the exception ofcomplex haematological treatments, almost allchemotherapy treatments could be delivered inan ambulatory care setting and some patientscan even take their medication at home.Medicines to control the adverse symptoms ofchemotherapy such as neutropenic fever andvomiting are much improved and the use ofthese, combined with better patient educationabout symptoms, should make emergencyadmissions due to side effects of treatment arare event. If problems arise, the aim should beto manage them in ambulatory care without theneed for admission via A&E.7.32 This model of care has been developed inthe United States. Clinicians who are familiarwith these services are convinced that theyprovide better care for patients and lead toreduced inpatient admissions. In a surveyconducted by Aptium, almost all patientspresenting to the ambulatory care centre withrapidly accelerating or acutely uncontrolledcancer-related pain were able to be managedwithout admission. 497.33 Patients who took part in the early CancerServices Collaborative pilots said that theypreferred being in hospital for shorter periods oftime as a quicker return home meant that theywere able to get back to normal life morequickly, to be independent, return to workearlier and be with their families.7.34 Four key principles have emerged fromthese pilots:●Unscheduled (emergency) patients should beassessed prior to the decision to admit. Nopatient should be admitted without a clearreason;

CHAPTER 7: DELIVERING CARE IN THE MOST APPROPRIATE SETTING 99●●●Patients should be on defined inpatientpathways based on their tumour type andthe reason for admission;Clinical decisions should be made on a dailybasis to promote proactive casemanagement; andEmergency admission should be theexception not the norm.7.35 By applying these principles inappropriateadmissions have been averted and lengths ofstay have been reduced. Significant capacity hasbeen released.7.36 Much can be learned from these projects.Implementing this best practice will require jointaction on the part of the whole local healthcommunity. In summary, the main lessons fromall of these sources are set out in boxes 37 to 39below:Box 37: Themes emerging from the Cancer Services Collaborative ImprovementPartnership pilot sites on inpatient careServices should provide:●●●●●●●Better patient education about the likely symptoms, risks and complications associated withtheir treatment and the importance of seeking early medical advice for complications;More proactive management and support of patients outside the hospital, such as phoningpatients on days when their white blood cell count is likely to be low and they are likely tofeel particularly unwell;Rapid assessments of patients admitted as an emergency by an appropriate cancer specialistto avoid unnecessary admissions or to minimise the length of hospital stay;Preadmission assessment of patients’ suitability for surgery and planning for discharge;Rapid systems for decision-making on the ward. Consultants should undertake daily wardrounds and make prompt decisions about the patient’s care and treatment, in particular onwhen the patient can be discharged;Clear protocols agreed for cancer patients who are staying on non-cancer wards.A designated contact, who is responsible for the patient’s care should be identified; andGood links with social care services on discharge.Box 38: Reducing elective breast surgery lengths of stay●●●●Between 1997/98 and 2005/06 the total number of surgical procedures for breast cancer(mastectomy or breast conserving operations) increased by 35%. However bed days onlyincreased by 3% reflecting increased efficiency and shorter lengths of stay;However average lengths of stay remain relatively long both for mastectomy (5-6 days) andbreast conserving surgery (2.8 days), with wide variations between trusts;Sandwell and West Birmingham Hospitals, one of the Cancer Services Collaborative pilotsites, have successfully reduced their length of stay following breast cancer surgery from sixdays to 23 hours; andThis was achieved by small changes in procedure following the operation and by carefulplanning before and during the hospital stay to avoid delays. Both hospital staff and patientshave a clear idea before the operation of when the patient is likely to be discharged.

100 CANCER REFORM STRATEGYBox 39: Streamlining recurrent admissions of cancer patientsSherwood Forest, one of the Cancer Services Collaborative pilot sites, has designed, tested andsuccessfully implemented an effective Recurring Admissions Patient Alert (RAPA) system. Alertsare generated electronically when a known cancer patient is logged on the Patient AdmissionSystem (PAS). Alerts are sent as an email to a designated key worker (usually a clinical nursespecialist) via a hand held blackberry device.The clinical team responsible for the patient is then able to assess the patient immediately.Unnecessary admissions can be avoided. When admission is needed the patient can be sent toan appropriate location.The system has proved so successful that it is being applied across a range of tumour sites andother long term conditions. It is also now being used successfully in other hospitals.Next steps for inpatient care7.37 Given the importance of inpatientcare from a patient perspective and theopportunities to release resources for otheraspects of care, PCTs, working with cancernetworks, should give high priority to:●●●●●Reviewing current bed utilisation byboth tumour group andelective/emergency split against nationalbenchmarks;Ensuring that providers take upopportunities to participate in cancerinpatient management programmes;Developing local strategies to tackle thekey causes of avoidable admissions andlong lengths of stay;Considering establishing ambulatoryfacilities and models of care; andUsing commissioning levers to drivechange and get best value for money.7.38 Action to improve inpatient care forcancer patients will need to involveclinicians and managers in a wide range ofdisciplines within the secondary sector aswell as those working in the communitysuch as GPs, community nurses and socialservices. PCTs are encouraged to ensure thatall relevant groups and services areinvolved in considering and implementingthese new models of cancer care.7.39 To encourage and support localimplementation of these recommendations,the Cancer Services CollaborativeImprovement Partnership and the CancerAction Team are developing a programmeof work on inpatient management. TheInpatient Management Programme willfocus initially on providing support andguidance on service improvement fordifferent categories of patients, such aspatients admitted electively for surgery orchemotherapy and patients admitted as anemergency who are subsequentlydiagnosed with cancer.7.40 Some of these recommendations willrequire modest investment. However, overall,they will not only result in improved experiencesfor patients, but also significant cost reductions.If a 25% reduction in non-surgical admissionsfor cancer were achieved across the country,estimates suggest this would result in a £340million reduction in costs. Such cost reductionsfrom improved care will clearly be veryimportant in ensuring that the NHS can affordto deal with rising overall demand for cancercare over the coming years. Chapter 10 of thisstrategy sets out in more detail the opportunitiesfor improving efficiency and minimising costs incancer services.Multidisciplinary team working7.41 Ten years ago cancer services in thiscountry were very fragmented. There was poorcommunication between primary, secondary andtertiary care and within hospitals and planning

CHAPTER 7: DELIVERING CARE IN THE MOST APPROPRIATE SETTING 101and coordination of care between specialistswas often inadequate.7.42 Major strides were made following theCalman-Hine Report in 1995 and the NHSCancer Plan in 2000. MDT teams are now wellestablished as the core model for cancer servicedelivery within hospitals. These teams bringtogether all the relevant experts to plan andcoordinate care.7.43 Depending on the cancer type these teamsinclude surgeons, physicians, radiologists,pathologists, oncologists, clinical nursespecialists, palliative care nurse specialists,radiographers and MDT coordinators. Alliedhealth professionals also play an important rolein many MDTs, such as speech and languagetherapists, dieticians, occupational therapistsand physiotherapists as do other professionalssuch as psychologists.7.44 Service delivery has also been enhanced bythe development of cancer networks. Tumoursite specific groups bring together the cliniciansinvolved in whole pathways of care. Groupshave also been established to ensure thatgeneric services such as chemotherapy andpalliative care are planned across institutionalboundaries.7.45 However, we recognise that some servicesare struggling to meet the requirements set outin the NICE Improving Outcomes Guidance andin the Manual for Cancer Services. Some MDTsdo not have all the relevant members or havepoor attendance at MDT meetings. In addition,in some places consultants are continuing tooperate on very small numbers of cases, inconflict with NICE guidance. PCTs should notcommission services from providers withsuch low volumes.7.46 Between 2004 and 2007, peer reviews ofcancer services have been carried out in eachcancer network in England. Regarding MDTworking, important findings requiring furtheraction following the reviews include:●●●Some lung cancer MDTs are lacking thenecessary core membership of a thoracicsurgeon, a radiologist, a CNS and a palliativecare clinician;A number of breast cancer MDTs are small,treating less than 100 patients; andSome local upper GI teams lack CNS orpalliative care support and do not havesufficient dietetic input.7.47 MDT working, as specified by NICEguidance, will remain the core model for cancerservice delivery in the future. Commissionerswill be expected to take account of thefindings from their local peer review and todecide whether all of their current MDTs areviable and can deliver the quality of carethat patients should reasonably expect (seechapter 9). In some cases, commissioners willneed to ensure higher levels of attendance atMDT meetings. In other cases, it may bepossible to provide an alternative, better modelof service. One possibility would be for a largerand better-staffed team from a neighbouringhospital to deliver an outreach service at ahospital which cannot sustain a full service of itsown. The Academy of Medical Royal Colleges’Inter-Collegiate Cancer Committee aredeveloping professional guidelines for MDTs.End of life care7.48 Although survival rates for many cancersare improving greatly, around 125,000 people inEngland die from cancer every year. Manypeople who die from cancer receive high qualityend of life care from the NHS, social care andthe independent hospice sector, which meetstheir social, psychological, spiritual and practicalneeds and provides effective management ofpain and other symptoms. However, too manypeople still do not receive this level of care.Furthermore, too often people’s preferencesabout their care are not elicited and action isnot taken to support people to live and die inthe place of their choice, which for many istheir home.

102 CANCER REFORM STRATEGY7.49 The government has put in place anumber of initiatives to improve the provision ofend of life care. This has included publication ofNICE Guidance on supportive and palliative care(2004) and the funding of the NHS End of LifeCare Programme (2004-07). In June 2006, thegovernment announced that it would developan end of life care strategy which would coveradults dying from all conditions and in allsettings. The overall aims of this strategy will beto improve the quality of care for all peopleapproaching the end of their lives and to enablemore people to die in the place of their choice.A comparable strategy for end of life care inchildren is also in development.7.50 The End of Life Care Strategy is beingdeveloped in parallel with work beingundertaken by SHAs on end of life care aspart of the NHS Next Stage Review. It isenvisaged that the End of Life CareStrategy will be published alongside thefinal report of the NHS Next Stage Reviewin Summer 2008.7.51 In the interim PCTs will wish to applythe learning gained from the operatingframework 2007/08 baseline reviews ofend of life care services, to influencecommissioning decisions in 2008/09.7.52 Strategic Health Authorities will wishto ensure that emerging themes from theNHS Next Stage Review are captured andacted upon. Examples of good practice fromthe Department of Health funded End ofLife Care Programme have recently beenpublished (Making Change Happen).These cover developments in hospitals,the community and care homes. Interestingnew evidence on the cost effectiveness ofa new service model has recently beenpublished by Marie Curie Cancer Care(see Box 40).Box 40: Marie Curie Delivering Choice ProgrammeBoston in Lincolnshire is the first place in the UK to have fully implemented the Marie CurieDelivering Choice Programme, with the NHS, Social Care and the voluntary sector all working inpartnership.A range of interventions was put in place over a three year period to deliver better end of lifecare for patients in their place of choice and improved support for carers.Serving a population of 150,000, three interventions have been found to be particularlyeffective:●●●Rapid Response Team – provides crisis and planned home care;Discharge Community Liaison Nurses – facilitate discharge of end of life patients fromhospital and provide continuity of care between hospital and community; andCoordination Centre – arranges packages of home care for palliative patients through alllocal agencies and providers.As a result of this innovation:● Deaths at home have risen from 17% to 42%;●Deaths in hospital have fallen from 63% to 45%; and● Total costs for end of life care have decreased by 8%.

Part 3:Ensuring delivery andmaintaining progress

105Chapter 8:Using information to improve quality and choiceChapter Summary●●●●●●Better information on cancer services and outcomes will enhance patient choice, drive upservice quality and underpin stronger commissioning;A new national survey tool to measure public awareness of risk factors and symptoms ofcancer is in development. This will be used for national surveys and is likely also to be usefulat a local level;Regular surveys of the experiences of cancer patients will be initiated, to monitor progress inthis important area;Collection of defined datasets on all cancer patients will be mandated through the nationalmodel contract. PCTs will be responsible for ensuring that this information is collected byMDTs and sent to cancer registries;A new National Cancer Intelligence Network (NCIN) is being established to bring togetherrelevant stakeholders and to act as a repository of cancer data; andThe NCRI partners will help fund research on the population level data collated by the NCIN.Introduction8.1 Collecting and using improved informationon different aspects of cancer services is centralto delivering this strategy. Virtually all theimprovements we expect to see over the nextfive years will rely on the availability of highquality, usable and relevant information.Provision of high quality information will:●●●●Empower patients in making importantdecisions about their care;Strengthen commissioning, as highlighted bythe world class commissioning competencies;Enable providers to identify areas where theycan make improvements;Facilitate greater understanding ofinequalities in cancer; and●Encourage informed national and localscrutiny of performance.8.2 Although there have been improvementsin the information collected on cancer services,it remains patchy and the data which areavailable have not always been used to improveservices, largely because they have notpreviously been brought together in a readilyusable form. Addressing this is now a keypriority. We particularly need to collect anduse high quality data on:●●Awareness of and attitudes to cancer riskfactors and symptoms among differentgroups within society;Patients’ experience of treatment and care;and

106 CANCER REFORM STRATEGY●Clinical outcomes, including survival, withadjustments for co-morbidity and stage ofdisease.8.3 This chapter sets out in more detail how wewill improve the data available to patients,commissioners and service providers, as well asthe steps we are taking to ensure that the datawe already collect is used to improve outcomes.Information on awareness of andattitudes to cancer8.4 Chapter 2 highlighted the low levels ofpublic awareness of preventable risk factors forcancer. Chapter 3 drew attention to the linkbetween late presentation by patients withcancer and failure to recognise that symptomsare serious or could be due to cancer.8.5 Robust data on levels of awareness of riskfactors and symptoms is needed to highlightgroups in whom awareness raising initiatives arelikely to be of greatest benefit. Surveys will alsobe needed to monitor the impact of suchinitiatives.8.6 As discussed in chapters 2 and 3 CancerResearch UK is currently developing a cancerawareness survey tool. Once this has beenpiloted, the Department of Health willinitiate the first ever national survey. This islikely to be in late 2008 or 2009. The surveywill then be repeated at least every twoyears, enabling us to track progress.8.7 The awareness survey tool will also beavailable to use at a local level, where it will bepossible to gain more detailed insights intovariations in awareness and attitudes withinlocal communities.Information on the experience ofpatients8.8 Chapter 5 sets out the measures we aretaking to build on the progress made inimproving patients’ experience of theirtreatment and care.8.9 A new cancer patient experience survey toolwill be developed. This will build on experiencefrom the previous cancer patient surveysundertaken in 2000 and 2004 and recent workto develop a specific survey tool for patientswith prostate cancer. The survey tool will coveraspects of care highlighted in chapter 5 as beingof great importance to patients, including thequality of:●●●Face to face communication;Information about their condition,treatments, services, financial benefits etc;andCoordination of care.8.10 Surveys of cancer patient experiencewill then be undertaken annually.These will be of sufficient size to providemeaningful data on the experience ofpatients with specific cancers in differenthospitals. It is likely that some tumour siteswill be covered in one year and others insucceeding years.8.11 The findings of these surveys will be madepublic. Individual patients may wish to takeaccount of these findings in choosing wherethey wish to be treated. Local user involvementgroups will also wish to use the results to focuson areas where service improvement is mostneeded. Commissioners and providers will wishto use the results of patient experience survey todrive up quality.Information on clinical outcomes8.12 Collecting information on clinicaloutcomes can in itself be a key driver forimprovements in quality. For example, collectionof information on service quality has been ahallmark of the NHS Breast ScreeningProgramme. Feedback to service providers hasbeen associated with year on year improvementsin service quality.8.13 A considerable amount of information onindividual cancer patients is already collected bycancer registries, through Hospital EpisodeStatistics (HES) and other national data sources.Attempts have been made to collect outcomesdata through national clinical audits, but not allhospitals have submitted to these, resulting in

CHAPTER 8: USING INFORMATION TO IMPROVE QUALITY AND CHOICE 107an incomplete picture. There are also importantgaps in what is currently collected.Box 41: Collecting data on clinicaloutcomes in lung cancerThe National Clinical Audit for lung cancer(using the LUCADA database) enablesclinicians to compare their outcomes withthose of colleagues in other centres andplan improvements accordingly. In 2006around 19,000 patient records were addedto the database for lung cancer patients inEngland. However, this represents onlyaround two thirds of incident cases.In addition, only a minority of patients hadfull information recorded on staging andcomorbidities.8.14 The most important gaps in data collectionhave been identified as follows:8.15 Much of the information required forchemotherapy and radiotherapy is alreadymandated through the outpatientcommissioning datasets (OPCDs), but is notbeing well collected. To ensure that thesedatasets are submitted, the collection andtimely onward supply of such informationwill be included in the national modelcontract.8.16 Primary Care Trusts (PCTs), workingthrough their providers, need to drive upthe quality of information through theircontracts monitoring. Multidisciplinaryteams (MDTs) will have an important role toplay in collecting all the relevant items ofinformation for all cancer patients undertheir care and for making this informationavailable to cancer registries and relevantnational clinical audits. By 2009 trustsshould be providing registries with data inan electronic format.●Information on staging and co-morbidity isonly variably recorded by teams caring forcancer patients;8.17 Information to be provided toregistries to populate the cancer registrydataset will include:●Information on histopathology andcytopathology is inadequately recorded;●The Royal College of Pathologistsminimum datasets;●●●●For those cancers covered by national clinicalaudits, returns are being made for onlybetween one third and two thirds of incidentcases;Information on radiotherapy activity has untilrecently been recorded in various ways bydifferent radiotherapy departments, with nonationally agreed dataset or data return;Information on chemotherapy delivery isrudimentary, largely because some providersof chemotherapy services are still usingpaper-based systems to prescribe and recordactivity; andAccurate information on ethnicity and otherfactors which may contribute to inequalitiesare not uniformly available.●●●Information on staging and co-morbidity;The national radiotherapy dataset (fromOctober 2008), which includes clinicaldata to enhance the OPCDS;Information on chemotherapy, to bedefined by the National ChemotherapyAdvisory Group by October 2008, forreporting from October 2009. This willinclude a small number of clinical itemsto enable MDTs and commissioners toassure themselves that prescribing is inaccordance with NICE Guidance.8.18 Moving forward, key clinical outcomemeasures and cancer data collection imperativeswill be reviewed on an annual basis to ensurethat information remains fit for purpose.

108 CANCER REFORM STRATEGYCoordinating information andusing it to improve outcomes8.19 The information described in this chapterwill only be effective if it is collected, analysedand published in a way which is useful topatients, commissioners and service providersand other interested parties. To co-ordinatethis, a National Cancer Intelligence Network(NCIN) will be developed, building,maintaining and quality assuring a newnational repository of cancer data. Access todata will be managed through strict governanceprotocols which already cover cancer registries.NCRI partners will help fund research onthe data collated by the NCIN, facilitating amore informed analysis of cancer servicesthan has ever been possible before.8.20 The NCIN will be tasked with ensuringoptimal use is made of all bodies of datacurrently collected and to identify and eliminateduplication of effort. In time, this will also meanidentifying and reducing the collection of datawhich are not being used effectively.8.21 The NCIN will bring together all therelevant stakeholders in cancer information.A steering group will oversee its development,drawing on the talents and expertise of peoplefrom a wide range of disciplines.8.22 The NCIN will manage the delivery andpublication of comparative national informationon diagnosis, treatment and outcomes for typesof cancers and types of patient. Working withothers, a new library of available informationwill be established and new analysescommissioned.Using data to improve servicequality8.23 In partnership with the NationalCancer Director, the NCIN will publish anannual report detailing the changes toclinical outcomes and patient experienceacross the country. Improvements will bemonitored and published as the NCINprogramme matures.Figure 14: How the National Cancer Intelligence Network will workStructure and accountabilitiesHealthDepartmentsRDsPH - EnglandNCRIBoardSteering GroupNCINCoordinatingCentreOther funders(e.g. CRUK)NCINCancerRegistriesOther stakeholders(includingconsumers)Otherepidemiologistsand health servicesresearchers

CHAPTER 8: USING INFORMATION TO IMPROVE QUALITY AND CHOICE 109Box 42: Early products expected from the National Cancer Intelligence Network●●●●●●An electronic toolkit, bringing together information on cancer in an accessible and usableway to enable the benchmarking of services and to inform commissioning;Collecting and analysing information on cancers in teenage and young adults;Evaluating services for secondary cancers in specific tumour areas;Making available to the public information on clinical outcomes through NHS Choices;Following up the progress of patients who have been involved in clinical trials over longerperiods; andAssessment of trends in one year survival rates for different cancers. These are a proxy forearly/late diagnosis.8.24 As mentioned in chapter 5, we will ensurethat patients will be able to access informationon the experience reported by other people withsimilar conditions, as well as clinical outcomesdata through NHS Choices (www.nhs.uk).Written information will be available for thosewithout internet access.8.25 As part of the process of incentivisingservice improvements, good commissioners willtake data into account when making decisionsabout service provision and agreeing prioritiesfor improvement with providers.Box 43: How commissioners could use information on clinical outcomes to improvecancer servicesIf clinical outcomes data reveals that a bowel cancer provider’s outcomes are lagging behindthose of comparable services, then patients may choose to be treated elsewhere. Equally acommissioner could work with the provider to agree actions to improve performance. This mightinclude better MDT working, recruiting additional staff or introducing new technologies.Box 44: How commissioners could use information on patient experience to improvecancer servicesIf a patient experience survey reveals that the experience reported by men with prostate canceris considerably worse than that of patients with other cancers in a particular area, then acommissioner could work with the service provider to address this disparity. Actions mightinclude recruiting an additional clinical nurse specialist, closer working with a patient supportgroup or introducing new decision aids to assist men when making a choice about treatment.Box 45: How commissioners could use information to reduce inequalitiesIf data on awareness of and attitudes to cancer signs and symptoms reveals a deficit in aparticular community, then commissioners can use this information to address the problems.Actions might include developing culturally-sensitive awareness and information programmesand evaluating their effect.

110Chapter 9:Stronger commissioningChapter Summary●●●●●Strong cancer commissioning will be vital to delivering world class cancer services;The recommendations in World Class Commissioning are directly applicable to cancerservices;In future cancer networks will play a central role, reporting to PCTs in commissioning cancerservices;This chapter includes a series of measures to strengthen the support available tocommissioners, including publishing a cancer commissioning guide and planning toolkit; andCommissioners should also use existing national guidance and standards and the process ofpeer review to assist them in making commissioning decisions for cancer.Introduction9.1 This strategy reflects a progressive transitionaway from central command towards greaterlocal control in health services. The NHS will beempowered and incentivised to drive up thequality of cancer care at a local level and to beresponsive to the needs of the local population.9.2 Everyone with a commitment to deliveringworld class cancer services should have a role toplay in helping deliver this strategy. However,strong commissioning will be particularlyimportant. This chapter sets out the newsupport which will be available tocommissioners, as well as some of the leversand tools which good commissioners will usewhen planning service improvements.Enabling strong commissioningfor cancer9.3 Strong cancer commissioning is vital toensuring that high quality services are deliveredwhich reflect national priorities, the needs oflocal populations and offer good value formoney. Responsibility for the implementationof most of this strategy will rest with PrimaryCare Trust (PCT) Boards as the statutory bodiesresponsible for commissioning the full range ofservices for their population within theirallocated budgets.9.4 To achieve the goals of this strategy, PCTswill need to work in closer partnership withother PCTs and their supporting practice basedcommissioning and specialised commissioningarrangements, taking strategic decisions to shapehow and where care is best delivered. They willneed to secure comprehensive services for cancerfor their population, that are coordinated acrossthe care pathway, including health promotion,social services, preventative and other servicesprovided jointly with local authorities.9.5 In the past, commissioning for cancerservices has not been as effective as it mighthave been. Peer Review has shown that whilst25% of networks have demonstrated thateffective collective commissioning arrangementsare in place, with an agreed three year strategic

CHAPTER 9: STRONGER COMMISSIONING 111framework for planning future cancer servicesand clearly identified priorities, a further 25%were found to be struggling in all these areas.This, therefore, remains an important area fordevelopment.9.6 It is important to recognise thatcommissioning for cancer is particularly complex.There are many different types of cancer, eachwith a different care pathway involving clinicalteams in the community, in acute generalhospitals and in specialist centres. Some aspectsof the diagnosis and treatment of cancer arerare and require highly specialisedcommissioning at a national or Strategic HealthAuthority (SHA) level. Other aspects of cancerare common and overlap with non-cancerservices (such as endoscopy, imaging, pathologyand some surgery) and thus should becommissioned at a more local level.●●As mentioned in chapter 8, an electroniccommissioning toolkit, is beingdeveloped to provide SHAs, SpecialistCommissioning Groups (SCGs), cancernetworks, PCTs and NHS Trusts withcomparative data on incidence, survivaland mortality from cancer and oninformation available from nationalsources such as hospital episodestatistics. The Cancer Action Team willsupport networks in using this toolkitand will commission upgrades as andwhen is necessary; andService specifications for each cancerpathway are being developed, whichwill be linked to the Map of Medicine,a process which offers high qualityclinical information, linked to the NHSIT Programme.9.7 A significant amount of cancer care is bestcommissioned at populations of one to twomillion people because of the critical massrequired to provide effective care. This includesradiotherapy, specialist surgical services forupper gastrointestinal, urological, gynaecologicaland head and neck cancers and aspects ofchemotherapy. For this reason we continue torecommend that cancer commissioning iscoordinated across a network of care, based onpatient care pathways into these services, ratherthan formal organisational boundaries.9.8 The Department of Health has publishedWorld Class Commissioning, which sets out howPCTs should ensure strong commissioning acrossall health services. A support and developmentframework will be available in 2008 to help PCTsgain the capability to become world class. TheCancer Reform Strategy sets out specific supportthat will be available to cancer commissioners.9.9 To strengthen commissioning of cancerservices the following actions are alreadybeing taken:●A guide for cancer commissioners,is currently in development, this willset out the appropriate level for thecommissioning of different cancer services;9.10 Given the cross-organisational way inwhich many cancer services are delivered,collaboration should be an important part ofcancer commissioning:●●●●Patients, local voluntary service providers,alternative providers and other stakeholdersshould be involved in influencing the way inwhich services develop;Commissioners and providers should worktogether to improve service quality andsafety and plan future provision;Clinicians and managers should collectivelydrive forward innovation in the way servicesare delivered; andPCTs should work together to developstrategies and agree priorities.9.11 Cancer networks play an essential role infostering this collaboration. PCTs in somenetworks have been very successful at bringingtogether the relevant commissioningpartnerships to plan and monitor servicedelivery. Other networks have lacked PCTengagement and network teams have largelyworked with providers in isolation ofmainstream health economy systems.

112 CANCER REFORM STRATEGY9.12 Cancer networks play an essential role infostering this collaboration. PCTs in somenetworks have been very successful at bringingtogether the relevant commissioningpartnerships to plan and monitor servicedelivery. Cancer networks have been lesssuccessful where they have lacked PCTengagement, network teams largely workingwith providers in isolation of mainstream healtheconomy systems.9.13 We believe that cancer networksshould play an important part in deliveringthe actions set out in this strategy.However, now is the appropriate time toreview their role. During the developmentof this strategy the advice we have receivedand which we endorse is that:●●●Networks should respect and supportany patient who chooses to receivetreatment at National Institute forHealth and Clinical Excellence (NICE)compliant services outside the network;Network teams will need to developstronger links with leads for cancer inProfessional Executive Committees andlocality practice based commissioningarrangements;There should be sound hostingarrangements for network teams andstrong leadership from a designated PCTCEO, ensuring that networks areaccountable to commissioners as wellas with PCT contract leads; and●Networks teams should act as agents forcommissioners, supporting them tocoordinate their activities and providingshared expertise, maintaining thedialogue with clinical teams and users,agreeing clinical guidelines andpathways and driving forwardinnovative, high quality care;● Networks will typically operate at 1 1 ⁄2 –2 1 ⁄2 million population and usually coverfive or six PCTs, as this corresponds topatient flows across a care pathway;●●●For less common cancers, networksshould work with each other to developstrategies and plans working with theirspecialised commissioning groups;Networks will act as advisors to PCTs onissues such as: needs assessment anddemand profiling, prioritisation withinthe cancer agenda, service improvementand redesign, quality assurance and peerreview, pathway and providerperformance, patient experience andvalue for money;Networks should ensure contestability ofservices between providers as well asco-operative working;●Core funding for network teams and userand clinician engagement mechanismsshould be from commissioners, althoughadditional funding can also be soughtfrom other sources.9.14 Fulfilling this function will requireexperienced clinical and managerialleadership, with networks needing to drawon expertise relating to public health,finance and pharmaceuticals. Further detailabout the future role of networks will beincluded in the commissioning guide forcancer.9.15 As part of their performancemanagement role, SHAs will be expected to:●●Monitor the performance of PCTs andSCGs in relation to cancercommissioning, against the key criteriaset out in this strategy and thecommissioning guide;Ensure that effective collectivecommissioning arrangements are inplace that are integrated intomainstream health economy needsassessment, contracting andperformance systems, supported byclearly defined working arrangementsbetween commissioning partners; and

CHAPTER 9: STRONGER COMMISSIONING 113●Assess whether PCTs, through cancernetworks, have appropriate mechanismsin place to ensure user involvement incommissioning.9.16 Commissioners should ensure that theviews and expertise of all potential providers areincluded within cancer networks. The lead PCTfor each cancer network will want to ensurethat the principles for market entry, which havebeen developed by the Department of Health tohelp guide commissioners, are usedappropriately. All providers of cancer services willbe expected to participate in the developing andmonitoring of agreed network guidelines andfacilitate clinical engagement in this.9.17 The overall responsibilities of PCTs inrelation to cancer commissioning aresummarised below:Box 46: Competencies for World Class Commissioning: Application to Cancer Services1. The PCT engages with and understands the views and priorities of local NHS organisationsand is respected as the local leader of the NHS.– PCTs working collectively through networks will engage with all organisationscontributing to cancer care pathways.2. The PCT works collaboratively with partners.– For cancer it is essential that clusters of PCTs across a network work effectively together,as care pathways frequently cross boundaries.– Partnership with Local Authorities is also vital.3. The PCT leads and seeks continuous and meaningful engagement with people patients andcommunities to shape services and improve health.– Network partnership groups can facilitate this.4. The PCT leads continuous and meaningful engagement of all clinicians to inform strategyand drive quality, service design and resource utilisation.– Network clinical groups can facilitate this.5. The PCT undertakes robust and regular needs assessments that establish a full understandingof current and future local health needs and requirements.– The network executive team can provide crucial information to assist the PCT in doing this.6. The PCT prioritises investment according to local needs, service requirements and the valuesof the NHS.– Cancer networks can make recommendations on prioritisation.7. The PCT influences provision to meet demand and secure required clinical and health andwellbeing outcomes.– The network can engage with providers on behalf of the PCTs.8. The PCT promotes and specifies continuous improvements in quality and outcomes throughclinical and provider innovation and configuration.– The cancer network can promote service innovation and redesign.9. The PCT deploys procurement skills that ensure robust and viable contracts.– Procurement remains a key responsibility of individual PCTs.10. The PCT performance manages providers to ensure contract compliance and continuousimprovement in quality and outcomes.– The network can act on behalf of and advise the individual PCTs where appropriatewhile ultimate responsibility lies with individual PCTs.11. The PCT demonstrates excellent financial management.– Networks can help to identify opportunities for managing budgets more effectively.

114 CANCER REFORM STRATEGYBox 47: World class commissioning for cancer: PCT responsibilitiesPCTs also have a number of cancer-specific commissioning responsibilities, including ensuringprogress on:●●●●●●●●●●●Using resources effectively and efficiently, especially in relation to inpatient care;Collecting and reporting public awareness and patient experience surveys and agreed clinicaldatasets;Increasing public awareness of factors associated with cancer and symptoms of the diseaseand promoting earlier presentation by patients with symptoms;Providing screening programmes in line with national guidance and with high levels ofcoverage;Reducing inappropriate delays in investigation and onward referral of new cancer patientsby GPs;Achieving waiting time standards;Enabling all patients to receive care from a properly constituted multidisciplinary team, withcomplex surgery only being undertaken by centres which are compliant with NICE guidance;Providing information and support to promote informed choice in treatment and care;Delivering safe and effective radiotherapy in accordance with the recommendations of theNational Radiotherapy Advisory Group;Ensuring the availability of safe and effective chemotherapy with new treatments beingdelivered in accordance with NICE guidance and having robust and fair processes in place formaking decisions on drugs that have not yet been appraised by NICE;Providing high quality supportive and palliative care in line with NICE guidance.PCTs can be assisted with almost all of these responsibilities by their cancer network.9.18 With cancer incidence increasing,significant increases in capacity will be required,although this may be in different forms ofservice than already exist. Commissioners shouldencourage innovative methods of delivering thisadditional capacity.User involvement9.19 Effective user involvement should have acentral role to play in improving the quality ofpatient care and delivering a patient-centredNHS. User involvement in cancer services isrelatively well developed in England throughnetwork partnership groups and other userinvolvement channels. The creation of new LocalInvolvement Networks (LINks) to better supportthe views of the local community and reflectpatient experience represents an importantopportunity to build on this.9.20 Good commissioners will want to ensurethat they have appropriate user involvementwhen making decisions about service provision.As part of this they should consider how best toassist LINks in engaging with current userinvolvement structures in cancer networks (suchas partnership forums and user involvementfacilitators). Consideration should also be givento ways of facilitating user involvement fromthose who do not join groups or attendmeetings but have valuable experience ofservices. This could be done by mail, phone ore-mail, with professional support for those withspecific needs (eg learning disabilities).9.21 The Cancer Action Team will continueto work with commissioners, throughcancer networks, to identify and spreadgood practice in relation to userinvolvement.

CHAPTER 9: STRONGER COMMISSIONING 115National guidance and standards9.22 National guidance will continue to play avital role as cancer services develop over thenext five years. Much of this guidance has beendeveloped by the NICE and predecessor bodies.9.23 NICE’s most high profile guidance oncancer relates to the use of new technologies(see chapter 4). However, there are several otherforms of guidance which it will be important forcommissioners to take into account.9.24 Improving Outcomes Guidance (IOG)on cancer services now covers the vast majorityof all cancers. Implementation of this guidance,which involves the establishment ofmultidisciplinary teams and reconfiguration ofsome complex services is now well advancedfor many cancers and is scheduled to becomplete for less common cancers by 2010(see chapter 4).9.25 The Healthcare Commission and in futurethe Care Quality Commission will play animportant role in assessing whether cancerservices deliver against these standards.We will consider asking the Care QualityCommission to undertake an improvementreview of cancer in 2009 to assess progresson implementing the IOGs. The regulatorwill also be encouraged to take actionagainst Trusts which continue to undertakework for which they are not designated bytheir SCG. We will also include IOGimplementation in the national modelcontract meaning that only fully IOGcompliant services should receive fullpayment.9.26 Clinical guidelines have been developed orare under development by NICE for several ofthe most common types of cancer. Theseguidelines provide advice to commissioners andproviders on the appropriate diagnosis,treatment and care for patients with particularconditions. They are developmental, reflectingthe fact that they cannot be delivered in theirentirety overnight but are something that theNHS should be working towards delivering.No national targets have therefore been set forimplementation although progress towardsimplementation is expected.9.27 In future we will monitor theimplementation of existing guidelinesthrough the improved data on clinicaloutcomes and results will be madeavailable to the regulator. A key criterionfor future guideline development will bewhether evidence suggests there issubstantial variation in clinical practice orwhere practice is changing rapidly.Peer review9.28 The National Cancer Peer ReviewProgramme, which is led by the Cancer ActionTeam and includes expert clinical and userrepresentation, provides important informationabout the quality of cancer services across thecountry. Between 2004 and 2007 Peer Reviewsof cancer services were carried out in eachcancer network in England. The results showclear links between strong network leadership,representative and effective network boardactivity, robust and clear commissioningarrangements and overall progress on cancer.9.29 There are some examples of excellentprogress in implementing IOGs, but there arealso instances where commissioners andproviders face the challenge of both agreeingcompliant IOG Action Plans and translatingBox 48: Summary of NICE products to help cancer commissioners●●●●Improving Outcomes Guidance on twelve cancer types or groups of cancer, together withgeneral guidance on supportive and palliative care;Three clinical guidelines, with six in development;29 technology appraisals, with eleven in development; and40 interventional procedure guidelines.

116 CANCER REFORM STRATEGYthose plans into the reality of clinical services onthe ground. Three year planning was found tobe weak in more than half of networks. Furtherwork is required to ensure that effectivecollective commissioning arrangements are inplace in all networks.9.30 Full information on the compliance ofindividual teams and services with the peerreview measures is available to commissionersand providers on the CQUINS website. Work isongoing to make this website more accessibleand user-friendly.9.31 An independent evaluation of the cancerpeer review programme has demonstratedstrong support for the programme to continue,but has also indicated that the programmeshould be modified. At present peer reviewfocuses largely on measures of structure andprocess. Over time, as reliable measures ofoutcome become available, there should be ashift in emphasis. In addition we have listenedto the concerns of reviewers and those beingreviewed about the burden of inspection.To reduce this, the peer review programmewill focus more on annual self assessment.Self-assessments made by individual teamsand services will need to be signed off bythe relevant provider CEO and by thecancer network. Some external visits willcontinue, but this will become theexception rather than the rule once a teamhas demonstrated a high level ofcompliance with the measures. Peer reviewdata will continue to be published to assistcommissioners and promote transparencyon service performance.●●●●Some complex cancer surgery currently fallsunder the same Healthcare Resource Group(HRG) as less complex non-cancerprocedures. As the tariff price for that HRG isbased on the average costs of all procedureswithin that HRG, the complex cancer workwill therefore be under rewarded and therewill be no incentive for trusts to specialise indoing this activity;There will be no motivation for acute truststo cease providing simple care and focus onmore complex cases if the tariff is notadjusted to reflect a more difficult and costintensive case mix in secondary care;There is a lack of clarity as to how MDTplanning meetings are reimbursed; andThe tariff is meant to cover capital costs,however it cannot take account of the highvariation in the cost of installing newbunkers for radiotherapy.9.33 To ensure that tariffs appropriatelyincentivise good practice and do not penaliseinnovation, we commissioned a review of cancertariffs. The review looked at both how cancer istreated under the current HRGs (HRGv3.5),which will be used for payment in 2008/09 andthe next version of HRGs, HRG4, which willestablish new national currencies forradiotherapy, chemotherapy and specialistpalliative care. This review identified thefollowing key issues as particular priorities ifPbR is to effectively support cancer services:●Improving coding quality and consistency;Ensuring that tariffs supportservice improvements9.32 The funding mechanism for cancer servicesshould recognise and incentivise appropriate andeffective care. At present, there is someevidence that the Payment by Results (PbR)tariffs are not always achieving this objective.For example:●●●●Ensuring fair payment for MDTs;Ensuring that the HRG4 structure works forfunding chemotherapy;Improving funding of outpatient cancer care;Ensuring fair payment for the highly complexcancer procedures; and●Supporting investment in new technologyand capital such as radiotherapy bunkers.

CHAPTER 9: STRONGER COMMISSIONING 1179.34 As a result the Department of Health will:●●●●Improve high level guidance, including theneed for robust costing of MDTs to helpcommissioning;Make use of expert panels for cancer servicesto ensure HRG4 is fit for purpose;Investigate the feasibility of normativeadjustments to cancer tariffs, or a separateor a separate outpatient tariff for cancer inkey specialties. This may help both with theproblems of reimbursing complex cancersurgery and recognising the need forMultidisciplinary Assessments as part of afirst outpatient appointment; andKeep the relationship between capitalexpenditure and the tariff under review.

118Chapter 10:Funding world class cancer careChapter Summary●●●●●Cancer programme costs are at least £4.35 billion a year, most of which is spent on hospitalservices;We spend less than comparable countries and will need to continue to invest in cancer;Cancer spend varies across the country but cost effectiveness and outcomes are key;Incidence and drug costs will continue to rise and investment will follow; andThere are significant opportunities to save money and deliver better outcomes, freeing upresources for reinvestment in cancer care. In particular, inpatient costs offer significantopportunities for saving.Introduction10.1 When the NHS Cancer Plan was launchedin 2000, the government committed an extra£570 million to meet the cost of extra staff andequipment. In fact, additional spending oncancer came to £693 million over a three yearperiod. The cancer workforce has expandedconsiderably, with around 49% moreconsultants specialising in cancer in 2006 thanin 1997 50 . Major investments have also beenmade in equipment such as CT scanners, MRIscanners, linear accelerators, breast screeningequipment and also in the use of new drugs.10.2 As the incidence of cancer increases andour ability to treat the disease improves stillfurther, so there will be additional cost pressureson cancer services. Significant further investmentin cancer will be necessary to meet thechallenge of cancer and to deliver world classservices for all those affected by it.10.3 There is also scope to make more effectiveuse of existing resources. To deliver good valuefor money and to make the investments whichwill be important to deliver world class cancerservices, it is vital that we maximise theeffectiveness of our current spending. Doing sodoes not need to be at the expense of quality.There is good evidence that streamlined, lessexpensive services can deliver better outcomes.The guiding principle should be to get thegreatest benefit to patients for the moneyinvested.10.4 This chapter analyses current spending oncancer services and sets out how the initiativesannounced in the Cancer Reform Strategy willbe paid for. It also flags up some of the factorsthat good commissioners will want to considerwhen making decisions about futureexpenditure on cancer.Current expenditure on cancerin England10.5 English cancer spend has increased by27% over the last three years and cancer is nowthe third largest disease programme in the NHS,behind mental health and circulatory diseases,costing the NHS around £4.35 billion a year.Approximately 80% of this is spent in the acute

CHAPTER 10: FUNDING WORLD CLASS CANCER CARE 119Figure 15: Estimated total NHS spend on cancer care 1Inpatient costs (excluding those related to surgery) [1]27%Surgery (including day cases and inpatient stays) [2]22%Drugs (cost of medicine, preparation and administration) [3]18%Outpatients (diagnostics, first and follow-up appointments) [4]8%Screening [5]5%Radiotherapy [6]5%Specialist Palliative Care (excluding voluntary sector) [7]5%Other [8]10%0 200 400 600 800 1,000 1,200 1,400Cost (£ million per annum)[1] Source: Hospital Episode Statistics 2005/06 combined with NHS Reference Costs 2005/06.Includes critical care beds and excess beddays[2] Source: Hospital Episode Statistics 2005/06 combined with NHS Reference Costs 2005/06.Includes critical care beds and excess beddays[3] Source: Prescription Cost Analysis 2005/06 (www.ic.nhs.uk) plus Hospital Episode Statistics2005/06 combined with NHS Reference Costs 2005/06 where HRG code is chemotherapy. Notethis excludes other drugs provided in secondary care (which are included in the inpatient costs).[4] Source: NHS Reference Costs 2005/06. Included cancer specific specialties; common diagnostictests for cancer; and assumed one new and one follow up appointment per surgical inpatient.[5] Source: NHS Cancer Screening Programmes[6] Source: NHS Reference Costs 2005/06[7] Source: National Council for Palliative care suggested cancer accounts for 90% of £211-233mNHS palliative care funding[8] “Other” includes: GP visits (Source: Activity from RCGP survey 2003. Unit costs from PSSRU(www.pssru.ac.uk)), Bone Marrow Transplants (Source: NHS Reference Costs 2005/06), A&Eattendances and Observation (assumed 11% of A&E costs are cancer related, equal to theproportion of all emergency admissions that are cancer related. Source: NHS Reference Costs),and a proportion of the overall NHS costs for the following: Paramedic services, Direct Accesstests, Community Nursing, Community Therapy, Rehabilitation, Paramedic services (Source: NHSReference Costs 2005/06. Assumed cancer accounts for 3-6% of each category).*These figures are in 2005/06 prices.

120 CANCER REFORM STRATEGYsector (including outpatients, diagnostics,treatment and emergency care) and theremaining 20% is spent in the communityincluding screening programmes, GPconsultations and palliative care.10.6 However, this estimate does not includeseveral key elements of cancer services,including:●●Preventative services such as smokingcessation, which contribute to better healthoutcomes across a range of diseases;Assessment, diagnostics and support prior todiagnosis, including for those patients wherecancer is excluded. Pre-diagnosis assessmentand diagnostics represent a significantadditional cost to the NHS. For example, arecent modelling exercise commissioned bythe Department of Health suggested that thecost of investigating potential bowel canceramounts to one quarter of the total cost of£1 billion expenditure on the condition; and●Palliative care provided by the voluntarysector, which is estimated to cost in excessof £200 million every year.Variations in spend on cancerin England10.7 Different areas of the country may havedifferent health needs and it will be importantfor Primary Care Trusts (PCTs) to take this intoaccount when making spending decisions.However a Kings Fund analysis of programmebudgeting data from 2003 to 2005 found thatsome PCTs spend much more on cancer thanothers, even after differences in the healthneeds of local populations and other factorshave been taken into account. The latestProgramme Budgeting data from 2006/07shows there is still wide variation in theproportion of PCT’s overall spend that goes oncancer, ranging from 3.6% to 9.1%.10.8 There is also significant variation inexpenditure on National Institute for Health andClinical Excellence cancer drugs by cancernetwork.Figure 16: Spending on cancer in 2006/07 as percentage total of PCT programme spend6050Number of PCTs4030201003 4 5 6 7 8 9Percentage of total spend across programmes

CHAPTER 10: FUNDING WORLD CLASS CANCER CARE 12110.9 Some variation in PCT spending may beexplained by factors such as incidence, length ofhospital stay and emergency admissions.However, these factors are unlikely to be the fullstory. Good PCTs will wish to benchmark theirexpenditure on cancer services with that ofother PCTs with similar health needs. Theyshould use the resources published alongsidethis strategy and the improved information onoutcomes which will be generated by theactions we are taking, to critically appraisewhether they are spending appropriate levels oncancer services in order to appropriately meetthe needs of their local population.Comparison of spend with othercountries10.10 Record investment in the NHS since 2000has been mirrored by substantial increases in thefunding for cancer services. However, thisfollows a prolonged period of low investmentin health services compared to the rest ofEurope and significant amounts of thisinvestment have been dedicated to addressingthis historic shortfall.10.11 Spending per capita on cancer servicesremains low compared to some other Europeancountries. Spending on cancer in England is £80per capita, compared to £121 per capita inFrance and £143 per capita in Germany. Overall,England spends 5.6% of its public healthcarebudget on cancer, compared to 7.7% in France,9.2% in the United States and 9.6% inGermany. 5110.12 There is no consensus on the correct levela country should spend on cancer services.This strategy marks a shift towards assessing theperformance of cancer services using measuresof outcomes and outputs rather than simplyinputs. However if outcomes fall below theaspirations set out in this strategy then it will beFigure 17: Estimated cost per head of NICE-approved cancer drugs used in hospitals in Jan-Jun 2005, by cancer network4.54.03.5Cost (£) per head3.02.52.01.51.00.50Method: Calculations based on volumes dispensed (from IMS-Health) and on lowest list prices foreach NICE-approved cancer drug.

122 CANCER REFORM STRATEGYimportant to review the reasons, includingfunding. The government will thereforecontinue to monitor how spending onEnglish cancer services compares to thespending of other countries, as well asvariations in spending on cancer withinEngland.Meeting future cost pressures10.13 Cancer costs are increasing in alldeveloped countries due to increased incidence,advances in all forms of treatment and theimpact of survivorship.10.18 Major capital investments related tothe commitments made in this strategyinclude digital mammography machines andincreased radiotherapy capacity to achievethe recommendations set out in theNational Radiotherapy Advisory Groupreport.10.19 Major additional revenue cost driversrelated to the strategy include:●Improving awareness and earlierpresentation;10.14 The estimated 1.5% yearly increase inincidence in England means that the baselinecosts of treating cancer would increase by atleast a similar percentage, adding £70 million tooverall costs each year.10.15 Drug costs have also recently beengrowing at over £100 million per year. Duringthe development of this strategy industry andclinicians told us that they estimate a futuregrowth in spending on drugs of approximately£60-80 million per annum. Reasons for thisupward trend include:●●●●●Expanding the breast screeningprogramme;Expanding the bowel screeningprogramme;Reducing cancer waits;Increasing radiotherapy capacity(eg workforce);New service models to replace inpatientcare;●●Greater use of adjuvant treatments,especially in common cancers;More treatment options in advanced disease;●●Enhancing care of survivors;Collecting better data on cancer tosupport world class commissioning; and●●New forms of drugs, which are given inaddition to chemotherapy; andIncreasing rate of introduction of new drugs.10.16 Subject to cost effectiveness beingdemonstrated, these cost pressures will bemet through increased allocations to theNHS, enabling commissioners to rise to thechallenge of ensuring world class cancerservices for the communities they serve.●Delivering new training initiatives.10.20 However, this strategy also sets outhow many of these costs can be offset overtime by improving the use of existingresources. Major savings will include:●●Reducing admissions and length of stayfor non-surgical cancer patients;Reducing elective stays for surgery;10.17 As well as the cost pressures listed above,this strategy includes a number of measures toimprove the quality of cancer services which willhave costs, with additional investment totallingsome £680 million.●●Improving efficiency of follow up aftertreatment; andImproving efficiency of cervicalscreening.

CHAPTER 10: FUNDING WORLD CLASS CANCER CARE 12310.21 Further details of these costings areincluded in the Impact Assessment publishedalongside this document.10.22 By far the greatest scope for improvedefficiency relates to inpatient care, which is thelargest area of cancer spend. Chapter 7 sets outhow this can be achieved, freeing up resourcesand improving the quality of care that patientsreceive. These efficiency savings will freeresources to ensure that NHS treatment serviceskeep pace with rising incidence of cancer incoming years.10.23 Further details on the estimates of costsand savings can be found in the ImpactAssessment, published alongside this strategy.Focusing spending on costeffective interventions10.24 It is important that cancer spending isfocused on cost effective services. Future costpressures can also be mitigated by reallocationtowards more cost effective interventions orincreasing the productivity of existing ones.10.25 Prevention remains the best form oftackling cancer, reducing the human sufferingcaused by the disease and improving outcomes.There is also a strong economic case forinvesting more in prevention, therefore reducingthe pressure on services in the long term.Chapter 2 sets out the measures we are takingto improve the prevention of cancer.10.27 Where possible, the same methodologyfor assessing the impact of services should beapplied across the care pathway. Measuring costeffectiveness allows us to assess the differencein patient outcomes that different interventionsdeliver. Cost effectiveness is usually measured as“costs per life year”, showing the cost of atreatment divided by the additional years it addsto a patient’s life, or “cost per quality adjustedlife year”, which also takes into account anyimpairment or improvement in quality of life thetreatment will cause.10.28 A recent study by the University of York’sCentre for Health Economics 52 has usedDepartment of Health Programme Budgetingdata to generate estimates of the overall linkbetween health expenditure and healthoutcomes in two of the largest health careprogrammes (cancer and circulatory diseases)between 2002 and 2004. This suggests that themix of interventions offered by English NHScancer services compare favourably with thecriteria used by NICE to assess cost-effectiveness.10.29 Good commissioners will want tocontinue to assess the cost effectiveness of allcancer interventions when making decisions onfuture spending. Where possible, they shoulduse sources of national guidance, such as NICE,when doing so.10.26 However, many people will unfortunatelycontinue to develop cancer and will require avariety of forms of treatment for different stagesof disease. Commissioners will therefore need toinvest in a variety of interventions across thecare pathway, ranging from prevention to endof life care.

124Chapter 11:Building for the futureChapter Summary●●●●The cancer environment continues to change rapidly. Delivering world class cancer serviceswill require effective planning;The NHS will need a skilled and flexible workforce, appropriate cancer facilities, goodhorizon scanning , high quality research and clear national leadership if it is to meet thecancer challenges of the future;The National Cancer Director will deliver annual reports on progress as this strategy isdelivered; andWe will also work with other countries to compare progress, share ideas and spread goodpractice.Introduction11.1 Cancer services have changed dramaticallyover the last ten years and the indications arethat they will continue to do so over the nextdecade:●●●Appropriate facilities;Good horizon-scanning;High quality cancer research; and●●The number of new cases of cancer is set tocontinue to rise, largely reflectingdemographic changes within society;More people will survive cancer or live forlong periods on active treatment; and●Clear national leadership, support andoversight.A skilled and flexible workforce11.3 The cancer workforce is extremely diverseand will remain so:●Our knowledge of how to prevent, diagnoseand treat cancer will continue to expand.11.2 Given the changing cancer environment,we will need to continue to reassess theprogress made in tackling cancer and refineour approach to reflect new developments.There will, however, be several prerequisitesto delivering world class cancer services:●A relatively small number of cliniciansdedicate the whole of their working time tocancer (such as medical oncologists, clinicaloncologists, haemato-oncologists, specialistcancer nurses and those working ononcology wards);●A skilled and flexible workforce;

CHAPTER 11: BUILDING FOR THE FUTURE 125●●●A much larger number of clinicians dedicatea significant part of their working time tocancer (such as many pathologists,radiologists, allied health professionals,general and community nurses, surgeons,physicians, haematologists andanaesthetists);Dealing with cancer patients represents onlya relatively small part of the workload ofGPs. However, they spend much of their timecaring for patients who have symptoms thatmight possibly be due to cancer; andOutside the NHS many staff, such as socialworkers or carers, play an important role insupporting cancer patients.11.4 As set out in chapter 1, the number ofspecialists working in cancer related specialtieshas increased markedly over the past decadeand is set to increase further over the next fiveyears. This has been supplemented by significantchanges in the roles undertaken by nonmedicallyqualified staff. Indeed, without thesechanges many of the improvements in serviceswould not have been possible:Workforce development11.5 A key function for each Strategic HealthAuthority (SHA) is organisational and workforcedevelopment, including the development ofstrategic regional workforce plans, based onsupply forecasts and local delivery plans.However the Cancer Policy Team and the CancerAction Team should continue to assist the SHAsin this function, ensuring consistency across thecancer workforce. Developments in newtreatments and care settings will requirechanges to the workforce and the cancer teamsare best placed to advise SHAs on the impactthese may have and provide further detailedinformation on cancer workforce profiles.Recent examples of this support include:●●Working with Skills for Health to developskills competences for professionals alignedto patient pathways to inform localised skillmix and training needs assessments;Identifying competence frameworks for thedevelopment of new and extended roleswithin cancer services, for example ClinicalNurse Specialists and the Integrated CancerCare Pathway Care Tracker role; and●●●The introduction of the four tier model fordiagnostic radiographers has beenintroduced with great success in some areas,for example enabling the breast screeningprogramme to be successfully extended towomen up to the age of 70 years;The 4 tier model has also been introduced insome radiotherapy departments, thoughthere is potential for wider uptake of thisapproach; andNurses have been trained to undertakeendoscopy (gastroscopy, flexiblesigmoidoscopy and colonoscopy). This hashelped to reduce waiting times for endoscopyservices and facilitated the roll out of the NHSBowel Cancer Screening Programme.●Supporting and developing multidisciplinaryteams (MDTs) by identifying and sharing thekey factors for the successful working ofMDTs.11.6 SHAs will also want to consider how bestto make links with those responsible forworkforce development outside the NHS such asSkills for Care, which is responsible fordeveloping the skills and qualifications of theadult social care sector.Training11.7 In general, workforce developmentand the commissioning of trainingprogrammes is the responsibility of SHAsand PCTs and should take account of localneeds and circumstances. However, where itmakes sense to identify and commissiontraining pilots at a national level, theCancer Policy Team and Cancer Action Teamwill continue to do so. This work will beundertaken in partnership with SHAs.

126 CANCER REFORM STRATEGY11.8 Service improvements have only beenpossible because of the hard work anddedication of the staff who work with cancerpatients. It is vital that they are supported withappropriate training. Several training initiativesrelating to the continuing professionaldevelopment of senior clinicians have beeninitiated centrally over the past few years tofulfil commitments in the NHS Cancer Plan or torespond to new developments. These trainingprogrammes are helping to drive up the qualityof care and to reduce waiting times for patientswith cancer. Programmes include:●A national endoscopy initiative which aims toimprove the quality and quantity ofendoscopists;● A national training programme for all 187colorectal cancer teams in England, with acentral focus on improving the quality anduptake of total mesorectal excision (TME);●●Advanced communication skills training; andSentinel node biopsy training for breastcancer teams, reducing the need for patientsto stay overnight in the hospital, lower coststo the NHS, enabling faster recuperation andresulting in higher patient satisfaction.11.9 The “Making Progress on Prostate Cancer”report announced plans to develop masterclasses in specialised urological surgicaltechniques to improve outcomes of surgicalprocedures in the treatment of prostate cancer.Following advice from the Prostate CancerAdvisory Group, it was decided that the focusshould extend to cover MDTs rather than justsurgeons. In March 2007 St James Hospital NHSTrust, Leeds was awarded the contract to run asmall pilot of three to four training coursesinvolving a total of 15-20 MDTs, an evaluationwill be completed within twelve months of workcommencing. The aim of the pilot is to enhanceMDT working and improve the quality ofsurgical techniques (focusing initially on openprostatectomy) to improve clinical outcomes,reduce side effects and shorten hospital stays.11.10 A pilot training programme will belaunched for laparoscopic surgery in colorectalcancer (see chapter 4), following NationalInstitute for Health and Clinical Excellenceguidance recommending this approach. The aimis to improve outcomes and experience forpatients and potentially save the NHS money forreinvestment. Contracts to run the trainingcentre as part of the pilot are to be awarded byJanuary 2008 and an evaluation of the pilot willbe produced 18 months later. Depending on theresults and evaluation of the pilot, considerationwill be given to the possibility of rolling out thetraining programme to other centres or otherprocedures.11.11 Training for radiographers will beimproved through the provision of virtualenvironments for radiotherapy (VERT) inradiographer training schools and inradiotherapy centres (see chapter 4). Theobjective of introducing this training is to reducethe current drop out rate from radiotherapytraining (35%) and reduce the pressure onclinical departments, thereby increasing capacity.By installing VERT in as many sites as possibleduring 2007/08 clinical training capacity will beincreased and pressure reduced on servicedepartments whilst providing learning forstudents in a “safe” environment. VERT can bepotentially provided at the ten radiotherapyeducational providers and the 50 clinical sitesfrom 2007/08 (subject to meeting applicantcriteria).Appropriate facilities11.12 Since the publication of the NHS CancerPlan unprecedented new and replacement CT &MRI scanners, linear accelerators (linacs) andother essential equipment for the diagnosis andtreatment of cancer have been made availableto the NHS through central programmes.By October 2007, 158 new MRI scanners,167 linacs, 247 CT scanners and over 730 itemsof breast screening equipment had beendelivered. This means that, in total,approximately 83% of MRI scanners, 85% ofCT scanners and 81% of linacs, now in use inthe NHS, were installed since January 2000. 53

CHAPTER 11: BUILDING FOR THE FUTURE 12711.13 Between 1999/2000 and 2005/06 thenumber of CT scans undertaken each year onNHS patients has increased by 83% (from 1.36million to 2.48 million). MRI activity hasincreased by 99% (from under 600,000 to over1.1 million). The latest monthly figures from thenational diagnostic data collection, part of the18 week pathway monitoring, shows themedian wait for an MRI scan was four weeksand the median wait for a CT scan was twoweeks in September 2007.11.14 Despite this progress, England is stillbelow the international average for both accessto MRI and CT scanners and further progresswill be necessary if we are to deliver the visionof world class cancer services outlined in thisstrategy. For example OECD estimates suggestthat in 2004, the UK had 5 MRI scanners permillion of population compared to aninternational median of 6.7. Similarly estimatessuggest that the UK had 7 CT scanners permillion of population, compared to a medianof 14. 5411.15 The National Framework for theDevelopment of PET-CT Services in England waspublished in October 2005 and recommendedthat provision should be made for 40,000 scansper annum for cancer patients across England by2010. A series of initiatives have already beenput in place to enable the NHS to reach thislevel. Currently 21,000 scans are undertakeneach year and this figure will double whenindependent sector contracts becomeoperational early in 2008. A UK PET-CT AdvisoryBoard has been established which will keep theuses of PET-CT under review and ensure thatthere is a controlled expansion of these services.11.16 In keeping with the broad thrust of thisstrategy, we do not propose to set new targetsfor the further expansion of cancer relatedfacilities. Instead, we will monitor the outputsand outcomes – both in terms of the numbersof procedures undertaken each year and inrelation to the achievement of the waiting timestandards outlined in earlier chapters. This willenable both providers and commissioners tobenchmark local provision against nationalaverages. The Department of Health will alsocontinue to benchmark progress in Englandagainst international good practice and advisecommissioners accordingly. Commissioners willneed to work with providers to ensure that theyhave appropriate capital investment strategiesthat enable older equipment to be replaced.Sufficient finance will be made available to theNHS as part of their general capital allocationsto fund investment in new cancer equipment.11.17 In addition to the provision of modernequipment, attention needs to be given to theoverall physical environment in which care isdelivered. Cancer patients have to attend clinics,day case units and/or radiotherapy departmentson multiple occasions over a period of weeks,months and years. Some of the day caseattendances may take several hours, for exampleto receive a prolonged infusion ofchemotherapy. The quality of the physicalenvironment in which such care is delivered canaffect a patient’s overall experience of care.Some groups, for example children and youngpeople, will have particular needs and should betreated in an environment appropriate to them.11.18 People affected by cancer deserve to betreated and supported in physical environmentswhich meet high quality standards. Althoughthe investment of recent years has improvedthe environment for patients and staff theimprovement needs to continue and besustained. We will work with patientgroups to develop a ‘kitemark’ for goodcancer facilities. Commissioners will beencouraged to take the quality of thephysical environment into account whenmaking service planning decisions andinformation on the quality of facilities willbe made available to patients through NHSChoices (www.nhs.uk).Good horizon-scanning11.19 Thanks to high quality research, the paceof change in cancer can be rapid. It is thereforevital that we have in place good quality horizonscanning,enabling us to identify and plan forthe opportunities and challenges of the future.11.20 The expert groups convened todevelop the site specific visions for cancer

128 CANCER REFORM STRATEGYservices in 2012 have provided valuableinsights into how services could and shoulddevelop over the next five years. However,these visions should not remain static.We will therefore reconvene these groupsat appropriate intervals to review progress,provide information on new developmentsand discuss emerging challenges.●●●●Prostate cancer;Radiotherapy & radiobiology;Prevention through lifestyle changes relatingto smoking, diet, exercise and alcohol;Supportive and palliative care;11.21 In addition to this we need to ensure thatnew technologies (such as drugs or othertreatments) which could benefit cancer patientsare identified and referred to NICE withoutdelay. During the past year the Department ofHealth and NICE have established a new processfor doing this. Potential technologies areidentified by the National Horizon ScanningCentre and are initially assessed by aconsideration panel convened by NICE andchaired by the National Cancer Director.Recommendations on priorities for technologyappraisals from this and equivalent panels forother disease areas are then made to Ministers.Chapter 4 sets out the changes that will beintroduced to this process for cancer medicines.High quality cancer research11.22 Progress on cancer research in the UK hasbeen impressive since 2000. The NHS CancerPlan heralded the establishment of the NationalCancer Research Institute (NCRI). Set up in2001, the NCRI operates as an ‘institute withoutwalls.’ It comprises 20 partners and is supportedby a secretariat whose costs are reimbursed bythe partners on annual basis. The partnershipincludes the Health Departments from all UKcountries as well as Research Councils, themajor charities that fund cancer research andthe Association of British PharmaceuticalIndustry (ABPI), together with cancer patients.11.23 The NCRI has set up and maintains adatabase of current research in cancer in theUK, which enables analysis of strengths andweaknesses in the portfolio. Partners haveworked together to prepare and publishauthoritative reports on a number of topics andto put together funding consortia to enhanceresearch in a number of areas, in particular:●●Lung cancer and mesothelioma; andNew imaging techniques, especially PET.11.24 To date, these research initiatives areworth a total of £31 million, from governmentand charity funders over their lifetime. Inaddition, the Department of Health provides£15 million a year for the National CancerResearch Network (NCRN), which is an NCRIinitiative. Over the period since NCRI was set up,the total annual government spend on cancerresearch through NCRI partners has risen from£105 million in 2002 to £137 million in 2006,an increase of 30%. Charity funding hasincreased from £152 million to £250 millionover the same period. The government’s fundingfor the NCRI does not include NHS servicesupport for cancer research, which was reportedby NHS organisations to have been worthapproximately £130 million in 2006/7.11.25 In the coming years, NCRI willcontinue to respond to national priorities asset out in this strategy and to overcomeweaknesses in the cancer research base inthe UK. A five year plan, which will begin inApril 2008, is currently in development andwill be published in early 2008. The planwill take account of gaps in the researchevidence base identified during thedevelopment of the Cancer ReformStrategy. NCRI does not fund researchdirectly but will continue to encouragepartners to work together on research inareas including:●Developing and evaluating theinterventions which promote earlierpatient presentation and reduceprofessional delay in referral;

CHAPTER 11: BUILDING FOR THE FUTURE 129●●Development of novel biomarkers for avariety of uses including diagnosis andtreatment monitoring;Prevention and screening;11.29 Chapter 7 sets out how the NCRI willdevelop the NCIN to collect and disseminateinformation about the performance of serviceson improving public awareness, clinicaloutcomes and patient experience.●●●Studies of rarer tumours;Understanding inequalities, includingthose due to ethnicity and gender andregional variations in outcomes; andImproving quality of life for cancersurvivors.11.26 National Cancer Research Institute (NCRI)also facilitates research through jointly fundedinfrastructure initiatives, including:●●●●●Experimental Cancer Medicine Centres forearly phase trials and translational studies;The NCRN for phase III trials;The National Cancer Intelligence Network(NCIN) as a repository of NHS data aboutcancer;The NCRI Informatics Initiative; andThe Confederation of Cancer Biobanks.11.27 In addition to focusing on the need fornew knowledge in these topics, NCRI ispromoting the development of research toolsand infrastructure, especially in informatics andbiobanking. This national approach to theprovision of resources will continue and willensure that costs can be shared and standardsboth harmonised and driven upwards. Some tenmillion pounds has been invested in specificNCRI initiatives in these areas and much more isinvested by individual Partners.11.28 NCRI Partners will continue to foster thehigh quality basic science for which the UK isinternationally renowned. Partners will also worktogether to ensure that discoveries aretranslated into new interventions as rapidly aspossible.11.30 The transition from NTRAC, the formerNational Translational Cancer Research Network,to the network of Experimental Cancer MedicineCentres (ECMCs) took place in April 2007,involving new investment totalling £35 millionover five years from the four HealthDepartments of the UK and Cancer ResearchUK. With Department of Health funding, NCRIhas initiated a bi-annual series of forummeetings to encourage networking andcollaboration in translational cancer research.These bring together scientists from a widerange of disciplines together with researchnurses, data managers, industryscientists/executives and many others.11.31 The NCRN was established in 2001.Since then it has met its target of doubling thenumber of patients entering clinical trials aheadof schedule. In the last five years the NCRN hastripled the number cancer patients enteringtrials and in each of the last two years Englandhas had the highest per capita rate of cancertrial participation in the world. Following thesuccess of the NCRN model, it has beenreplicated in other disease groups as part ofthe UK Clinical Research Network (UKCRN).Department of Health funding for the NCRNtotalled £54 million in the first five years.Over the next five years it is likely to total over£77 million. NCRN plans for the future involvecloser working with NICE and a greater focuson supporting high priority studies.11.32 ‘Best Research for Best Health,’ publishedin 2006, sets out the government’s goals forresearch and development in the NHS. 55Substantial progress has already been made onimplementation and the National Institute ofHealth Research (NIHR), though which manyof the initiatives will be delivered, has beenestablished. Cancer forms an important partof the work of many of the NIHR BiomedicalResearch Centres.

130 CANCER REFORM STRATEGY11.33 Looking to the future, the Department ofHealth is supportive of plans for the NationalCancer Intelligence Network, which will providea valuable resource for research. TheDepartment of Health stands ready to fundand support high quality health servicesresearch using data generated by the NCIN.11.34 The Department of Health also standsready to fund targeted research to supportareas of high need. For example, on screening(chapter 3), the Department of Health is leadingwork on behalf of the NCRI to commissionresearch on the feasibility of a UK trial of CTscreening for lung cancer. The extension of theNHS Breast Screening Programme provides anopportunity to evaluate the number ofadditional lives saved. New screeningtechnologies, particularly in bowel cancer andcervical cancer screening, will need to beproperly evaluated. On imaging andradiotherapy (chapter 4) the academiccommunity needs more support to design andimplement high quality research trials. TheDepartment of Health is therefore consideringhow best to achieve this.Clear national leadership, supportand oversight11.35 National leadership will remain importantin maintaining progress on cancer and ensuringappropriate planning for the future.11.36 The role of National Cancer Director wasestablished in 1999. Over the past eight yearsthis role has evolved to encompass both thedevelopment of cancer strategy and oversight ofits implementation. Specific aspects of the roleinclude:●●●●Providing advice to Ministers and theDepartment of Health on all aspects ofcancer policy;Supporting SHAs, Primary Care Trusts andproviders in the implementation of theCancer Perform Strategy;Facilitating the spread of good practice;Monitoring progress;●●Liaising with arms length bodies whocontribute to the cancer agenda (such asNICE, Healthcare Commission, NationalPatient Safety Agency, Monitor, NHSInstitute); andDeveloping and strengthening partnershipswith external stakeholders (such as cancercharities, hospices, Royal Colleges, industryand the cancer research community).11.37 To fulfil these duties the National CancerDirector is supported by the Department ofHealth Cancer Policy Team, the Cancer ActionTeam (which is increasingly focusing on supportfor commissioners), the Cancer ServicesCollaborative Improvement Partnership (CSC-IP)(which largely provides support to providers)and the National Cancer Screening Programmes.11.38 The roles undertaken by the NationalCancer Director and the national cancer teamswill be critical following the publication of thisstrategy. However, the emphasis on differentactivities will continue to change over time. Forexample, until recently the work of the CSC-IPhas focused largely on helping provider servicesto reduce waiting times for cancer. In the future,the main emphasis of their work will be onsupporting providers to reduce unnecessaryhospital inpatient care and outpatient visits.Role of stakeholders11.39 Over the past few years, cancer serviceshave benefited from the development ofsuccessful partnerships with externalstakeholders both at a national and local level.The voluntary sector, both through cancercharities and hospices, has played a vital role,as have partnerships with industry and theprofessions. The Department of Health has alsobenefited from the input of a wide range ofhealth professionals, patients and NHS managerson numerous advisory groups related to specificaspects of cancer.11.40 These partnerships have been particularlyvaluable in helping to shape the Cancer ReformStrategy. The groups set up to help inform thedevelopment of the Strategy have nowcompleted their tasks and been disbanded.

CHAPTER 11: BUILDING FOR THE FUTURE 131However, the government is keen to retain theenthusiasm and commitment shown by externalstakeholders and the benefit which comes fromexternal scrutiny and expertise.11.41 We will convene a conference in the NewYear for stakeholders in cancer policy, includingthose who contributed to the development ofthe Cancer Reform Strategy, to discuss the nextsteps in delivering the strategy, as well as howwe can all contribute to its success.Assessing progress11.42 The government is committed totracking progress on cancer to ensure thatthe aims of this strategy are achieved.The National Cancer Director will deliverannual reports on progress to Ministers tohelp enable an informed discussion withstakeholders. These reports, which will bepublished, will assess overall progress ontackling cancer, as well as examining in moredetail developments relating to a number ofdifferent forms of cancer each year. The NationalCancer Director will work closely with theNational Cancer Intelligence Network on thedevelopment of these reports. An advisoryboard of stakeholders will be also convenedto provide input to each annual report.11.43 If we wish to have world class cancerservices, then it will be necessary to compareour services with those of other countries.Furthermore there is much we can learn fromthe experience of others, sharing ideas,comparing outcomes and learning from goodpractice. As the NHS implements this strategywe will continue to track our progress in relationto other countries on issues such as survival andmortality, awareness, early detection, access todifferent forms of treatment, clinical outcomes,patient experience and costs. However, thesecomparisons are not simple and without carefulconsideration, could lead to false conclusions.We will therefore ask the NCIN to develop aframework for accurate comparison with othercountries. In particular, we envisagecollaborating closely with countries in Europe,the USA, Canada, New Zealand and Australia.

Annexes

134Annex 1:Documents published alongside theCancer Reform StrategyExecutive Summary of Cancer Reform StrategySummary of what the Cancer Reform Strategymeans for patientsEquality Impact AssessmentPower Point presentation on Cancer ReformStrategySummary of NICE products for cancerVisionsGlossary of cancer terminologyImpact AssessmentMembership of Advisory BoardMembership of working groups●●●●Bowel cancer;Brain and CNS cancers;Breast cancer;Children and young people;●Awareness and early detection;●Cancer genetics;●Clinical outcomes;●Gynaecological cancers;●Commissioning and levers for change;●Haematological cancers;●Costs and benefits;●Head, neck and thyroid cancers;●Patient experience; and●Lung and mesothelioma;●Service models/provider development.●Prostate cancers;●Sarcoma;●Screening;●Skin cancers;●Upper Gastrointestinal cancers; and●Urological (excluding prostate) cancers.

135Annex 2:References1 Cancer is our number one fear but mostdon’t understand how many cases can beprevented, 2007, Cancer Research UK2 Cancer Backup: Public Priorities for Healthin Britain, 2003, London, MORI forCancer Backup3 F. Berrino, R. De Angelis, M. Sant, S.Rosso, M. B. Lasota, J. W. Coebergh andM. Santaquilani: Survival for eight majorcancers and all cancers combined forEuropean adults diagnosed in 1995–99:results of the EUROCARE-4 study, 2007,Lancet Oncology, 8:773-7834 J Ferlay, P Autier, M Boniol, M Heanue, MColombet and P Boyle: Estimates of thecancer incidence and mortality in Europein 2006, 2007, Annals of Oncology,18(3):581-5925 Picker Institute Europe: National Surveysof NHS Patients: Cancer: NationalOverview 1999/2000, 2002, Departmentof Health6 Data Source: DH programme budgetingdata at www.dh.gov.uk7 M. Richards: Cancer ten years on:improvements across the whole carepathway, 2007, Department of Health8 National Audit Office: The NHS CancerPlan: A Progress Report, 11 March 20059 H. Møller, L. Fairley, V. Coupland, C.Okello, M. Green, D. Forman, B. Møllerand F. Bray: The future burden of cancerin England: incidence and numbers ofnew patients in 2020, May 2007, BritishJournal of Cancer, 96:9;1484-88.10 Department of Health: Our NHS, OurFuture: NHS Next Stage Review – InterimReport, Crown, October 200711 Cancer Research UK Reduce the RiskCampaign12 J. Wardle, J. Waller, N. Brunswick and M.J. Jarvis: Awareness of risk factors forcancer among British adults, 2001, PublicHealth, 115:173-17413 World Cancer Research Fund/AmericanInstitute for Cancer Research: Food,Nutrition, Physical Activity, and thePrevention of Cancer: a GlobalPerspective, 2007, Washington DC: AICR14 D. King, B. Butland, S. Jebb, P. Kopelman,K. McPherson, S. Thomas, J. Mardell, V.Parry: Tackling Obesities – Future Choices– Project Report, 2007, GovernmentOffice for Science15 World Cancer Research Fund/AmericanInstitute for Cancer Research: Food,Nutrition, Physical Activity, and thePrevention of Cancer: a GlobalPerspective, 2007, Washington DC: AICR16 G. K. Reeves, K. Pirie, V. Beral, J. Green,E. Spencer and D. Bull: Cancer incidenceand mortality in relation to body massindex in the Million Women Study: CohortStudy, 2007, British Medical Journal17 Our inheritance, our future: Realising thepotential of genetics in the NHS, 2003,Department of Health

136 CANCER REFORM STRATEGY18 F. Berrino, R. De Angelis, M. Sant, S.Rosso, M. B. Lasota, J. W. Coebergh, M.Santaquilani and the EUROCARE WorkingGroup: Survival for eight major cancersand all cancers combined for Europeanadults diagnosed in 1995–99: results ofthe EUROCARE-4 study, Lancet Oncology2007; 8:773-78319 Peto et al, Lancet 2004; 364:249-5620 Screening for Breast Cancer in England:Past and Future, February 200621 Cancer Statistics registrations:Registrations of cancer diagnosed in2004, England, Office for NationalStatistics22 Ben-Shlomo et al, European Urologysupplement, 2007; 6(2):17623 F. Berrino, R. De Angelis, M. Sant, S.Rosso, M. B. Lasota, J. W. Coebergh andM. Santaquilani: Survival for eight majorcancers and all cancers combined forEuropean adults diagnosed in 1995–99:results of the EUROCARE-4 study, 2007,Lancet Oncology, 8:773-78324 S. Macdonald, U. Macleod, E. Mitchell, D.Weller, N. Campbell, D. Mant: Factorsinfluencing patient and primary care delayin the diagnosis of cancer: a database ofexisting research and its implications forfuture practice, 2004, Cancer SymptomProfiles and Referral Strategies for PrimaryCare Research Programme25 C. Burgess, A. Bish, M. Hunter, H. Potts,B. Grunfeld, A. Westcombe, P. Salkovskis,L. Linsell, M. Cochrane, M. Richards andA Ramirez: The development of anintervention to promote earlypresentation of older women with breastcancer, 2005, Cancer Research UKLondon Psychosocial Group, KingsCollege London26 S. M. Bentzen, G. Heeren, B. Cottier, B.Slotman, B. Glimelius, Y. Lievens, W. V. D.Bogaert, Towards evidence-basedguidelines for radiotherapy infrastructureand staffing needs in Europe: the ESTROQUARTS project, 2005, Radiotherapy andOncology, 75:355-6527 Data source: IMS Health and cancernetwork data28 P Hewitt (Secretary of State): Our health,our care, our say: a new direction forcommunity services, 2006, Departmentof Health29 Trevatt and Petit (2007 unpublishedresearch)30 Because Men Matter: the case for clinicalnurse specialists in prostate cancer, 2007,Prostate Cancer Charter for Action31 Trevatt and Petit (2007 unpublishedresearch)32 Comptroller and Auditor General NationalAudit Office: Tackling Cancer: Improvingthe Patient Journey, 2005, National AuditOffice33 C. Simm, J. Aston, C. Williams, D. Hill, A.Bellis, N. Meager, Organisations’Responses to the Disability DiscriminationAct, 2007, DWP Research Report 41034 DH Single Equality Scheme,www.dh.gov.uk35 P. Jha, R. Peto, W. Zatonski, J. Boreham,M. J. Jarvis, A. D. Lopez: Socialinequalities in male mortality, and in malemortality from smoking: indirectestimation from national death rates inEngland and Wales, Poland, and NorthAmerica, 2006, The Lancet,14:doi:10.1016/S0140-6736 (06)68975-7.36 A. J. Ramirez, A. M. Westcombe, C. C.Burgess, S. Sutton, P. Littlejohns, M. A.Richards: Factors predicting delayedpresentation of symptomatic breastcancer: a systematic review, 1999, Lancet,353:1127-31.

ANNEX 2: REFERENCES 13737 K. Moser, J. Patnick, V. Beral: Do womenknow that the risk of breast cancerincreases with age? NHS CancerScreening Research Group, University ofOxford38 K. Lavelle, C. Todd, A. Moran, A. Howell,N. Bundred and M. Campbell: Nonstandardmanagement of breast cancerincreases with age in the UK: apopulation based cohort of women > 65years, 2007, British Journal of Cancer,96;1197-120339 M D Peake, S Thompson, D Lowe and MG Pearson: Ageism in the management oflung cancer, 2003, Age and Ageing,32;171-17740 D. Wilkins: Tackling the excess incidenceof cancer in men: proceedings of theexpert symposium, 2006, Mens HealthForum41 K. Patja, P. Eero, M. Iivanainen: Cancerincidence among people with intellectualdisability, Journal of Intellectual DisabilityResearch 45 (4), 300–307, 200142 The NHS – Health for all? People withlearning disabilities and health care,Roslyn Band, Policy Officer, Mencap, June199843 Death by indifference, 2007, Mencap48 Data source: National Cancer ServicesAnalytical Team, www.canceruk.net49 T. B. Strouse, F. Flanagan, T. Kerrihard, C.Williams and D. L. Wolcott, MD:Managing Cancer Pain in a 24-HourOutpatient Cancer Centre, 2007,Supportive Oncology, Vol. 4, No. 750 M. Richards: Cancer ten years on:improvements across the whole carepathway, 2007, Department of Health51 Data source: England: DH ProgrammeBudgeting; France: National Insurance(Assurance Maladie), US: sum of Medicareand Medicaid payments, Germany: totalhealth spend less private health insuranceand private households52 Martin, S., Rice, N., Smith, P. The linkbetween health care spending and healthoutcomes: evidence from Englishprogramme budgeting data. Centre forHealth Economics, March 2007.53 Data source: Health Protection AgencyOctober 200754 OECD Health Data 2005, OECD; NationalInventory of Selected Imaging Equipment,2005; Information Services for the HealthCare and Scientific Markets (IMV) (datafor the United States)44 J. Fish, D. Anthony: UK National Lesbiansand Health Care Survey, 2005, Womenand Health, 41(3);27-45.45 Department of Health: Our NHS, OurFuture: NHS Next Stage Review – InterimReport, Crown, October 200746 The Royal College of Radiologists: Makingthe Best Use of a Department of ClinicalRadiology, Guidelines for Doctors. 5thEdition, 2003, The Royal College ofRadiologists.47 H. Møller: The future burden of cancer inEngland: incidence and numbers of newpatients in 2020, 2007, British Journal ofCancer, 96:1484-1488

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