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<strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong>Maintaining momentum, buildingfor the future – first annual report


<strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong>Maintaining momentum, buildingfor the future – first annual report


DH InformatIonPolicyHR/WorkforceManagementPlanningClinicalEstatesCommissioningIM & TFinanceSocial Care/Partnership WorkingDocumentGateway reference: 10720titleauthorFor informationPublication date 01 Dec 2008target audienceCirculation listDescriptionCross referenceSuperseded documentsaction requiredtimingContact detailsfor recipient’s use<strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> – <strong>First</strong> <strong>Annual</strong> <strong>Report</strong>2008Jane Allberry, <strong>Cancer</strong> ProgrammePCT CEs, NHS Trust CEs, SHA CEs, Care TrustCEs, Foundation Trust CEs, Medical Directors,Directors of PH, Directors of Nursing, LocalAuthority CEs, PCT Chairs, NHS Trust BoardChairs, Special HA CEs, Directors of HR,Directors of Finance, Communications Leads,Information for General Public, VoluntaryOrganisationsPCT CEs, NHS Trust CEs, SHA CEs, Care TrustCEs, Foundation Trust CEs, Medical Directors,Directors of PH, Directors of Nursing, LocalAuthority CEs, Directors of Adult SSs, PCT PECChairs, PCT Chairs, NHS Trust Board Chairs,Special HA CEs, Directors of HR, Directorsof Finance, Allied Health Professionals, GPs,Communications Leads, Emergency CareLeads, Directors of Children’s SSs, VoluntaryOrganisations/NDPBsThis is the <strong>First</strong> <strong>Annual</strong> <strong>Report</strong> for the <strong>Cancer</strong><strong>Reform</strong> <strong>Strategy</strong> which aims to improve cancerservices<strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong>N/AN/AJane Allberry<strong>Cancer</strong> ProgrammeRoom 401Wellington HouseSE1 8UG020 7972 1300© Crown copyright 2008<strong>First</strong> published December 2008Produced by COI for the Department of HealthThe text of this document may be reproduced without formal permissionor charge for personal or in-house use.www.dh.gov.uk/publications


1ContentsLetter from Professor Mike Richards, National <strong>Cancer</strong> Director3Chapter 1 The challenge of cancer 5Chapter 2 Preventing cancer 8Chapter 3 Diagnosing cancer earlier 15Chapter 4 Ensuring better treatment 22Chapter 5 Living with and beyond cancer 31Chapter 6 Reducing cancer inequalities 39Chapter 7 Delivering care in the most appropriate setting 45Chapter 8 Information to improve quality and choice 52Chapter 9 Stronger commissioning 56Chapter 10 Funding world class cancer care 60Chapter 11 Building for the future 61 AnnexRelevant documents published since the publication of the <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong>63


3Letter from Professor Mike Richards, National<strong>Cancer</strong> DirectorDear Secretary of StateCANCER REFORM STRATEGY –MAINTAINING MOMENTUM,BUILDING FOR THE FUTUREThe <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> (CRS) committedthe National Clinical Director to deliver annualreports on progress to Ministers. I am verypleased to submit the first such report.The <strong>Strategy</strong> also said that an advisory boardof stakeholders would be convened to provideinput to each annual report. I would like tothank all the members of the CRS AdvisoryBoard who have very helpfully contributed to thisannual report.I would also like to take the opportunity tothank the wide range of stakeholders whohave worked with us over the past year onimplementation of the <strong>Strategy</strong>. We cannotimplement the <strong>Strategy</strong> without their help andsupport and we hope that they will continue towork with us in the year ahead.In this report, I have quite systematically gonethrough the CRS to report on: where progresshas been made, our priorities for the future, andany developments over the past year which needto shape future implementation of the CRS.In this covering letter, I would like to highlightsome of the most important issues within thesecategories.<strong>First</strong>, I will draw attention to the furtherconsiderable progress with reducing cancermortality. The latest data (the average for 2005­07) indicates that the England cancer mortalityrate has fallen by 18% since 1995-97 and theinequalities gap has narrowed by 13%. Thismeans that nearly 9000 lives will have beensaved in the under 75s in 2007 compared withthe 1996 baseline.In terms of moving forward this year withimplementing the CRS, highlights have been:• the introduction of the HPV vaccine, whichprotects against two strains of HPV thatcause over 70% of cervical cancer cases• the successful further rollout of bowel cancerscreening – so far, nearly 2000 cancers havebeen detected• the launch of the National Awareness andEarly Detection Initiative – late diagnosis hasbeen a major factor in poor cancer survivalrates, and this initiative should begin totackle this problem• the launch of the National <strong>Cancer</strong>Survivorship Initiative – we know that thereare now about 1.6 million cancer survivorsin England, and this initiative aims to ensurethat they receive the integrated, qualityservices that they need• the establishment of the National <strong>Cancer</strong>Intelligence Network – better information oncancer services and outcomes will drive upquality and underpin stronger commissioning• the launch of the <strong>Cancer</strong> CommissioningToolkit, which provides the information thatcommissioners need to commission effectivelyfor their populations.


4 CANCER REFoRM STRATEgyFollowing discussion with the CRS AdvisoryBoard, I would identify the following asparticular priorities for us for the year ahead:• ensuring that primary care is fully engaged –in particular in the challenge of ensuring earlydiagnosis• tackling the issues raised by the NationalConfidential Enquiry Patient outcome andDeath (NCEPoD) report on systemic anticancertherapy• ensuring that radiotherapy capacity is beingdeveloped in line with the requirements ofthe 2010 waiting time standard• using implementation of the Improvingoutcomes guidance and peer review aslevers to improve quality• making sure that patients have theinformation that they need – building onexisting good work on patient informationpathways and linking with NHS Choices• putting patient experience at the heart ofour measurement of quality of services,particularly by moving forward on the patientexperience survey programme• continuing the very impressive work that isunder way in transforming inpatient care,which will avoid unnecessary emergencyadmissions and reduce length of stay• moving forward on a range of training issues,for example, the more widespread use oflaparoscopic surgery for colorectal canceremphasis on comprehensive wellbeing andprevention services, promoting personalisedcare plans for those with long-termconditions and empowering patients. Butthere needs to be effective coordination atlocal level between the work on the NSR andthe work on implementation of the CRS• the publication of the End of Life Care<strong>Strategy</strong>, in July 2008 – this tackles improvingquality of care for people approaching theend of their lives, and we are working closelywith those implementing the <strong>Strategy</strong> toensure consistency of approach• my report, in November, on improving accessto medicines for NHS patients.of course we would all like to have seen moreand faster progress on implementation of theCRS, but I am satisfied that considerable andsignificant progress has been made, and that weare well positioned for further progress next year.The National <strong>Cancer</strong> Team – which supportsthe implementation of the CRS – consists of anumber of different organisations, includingthe Department of Health, the National <strong>Cancer</strong>Action Team, NHS Improvement, NHS <strong>Cancer</strong>Screening Programmes, the National <strong>Cancer</strong>Intelligence Team and the National <strong>Cancer</strong>Service Analysis Team. I would like to recordmy thanks for their work over the past yearand I look forward to working with them – andcolleagues throughout the NHS, social care andthe private and voluntary sectors – over the yearahead.• local implementation.There have been many developments since theCRS which are relevant to the development ofcancer services, but here I will highlight three:Prof Mike Richards CBE• High Quality Care For All, the final report ofthe Next Stage Review (NSR), in June 2008– the emphasis on quality should providean important boost for delivering the CRSobjectives and there are many importantindividual elements, for example the


5Chapter 1:The challenge of cancerIntroduction1.1 This progress report generally uses thesame headings as were used in the <strong>Cancer</strong><strong>Reform</strong> <strong>Strategy</strong> (CRS), in order to reportsystematically on progress over the past year.This chapter, however, simply presents somenew figures around incidence, mortality,prevalence and survival after one year – whichdemonstrate that improvements continue to bemade in outcomes, but the challenge in termsof rising demand for services and resources alsocontinues.Incidence1.2 The incidence of cancer continues to risedue to the ageing population. <strong>Cancer</strong> incidencefigures for 2006 were published in october 2008and they showed:• there were 242,200 new cases of malignantcancer (excluding non-melanoma skin cancer)registered in England in 2006 – 121,600new male cases/120,600 new female cases<strong>Cancer</strong> Incidence in England– compared to around 239,000 in 2005 and223,500 in 2000• the age-standardised cancer incidence rateincreased by less than 1% for both malesand for females between 2005 and 2006• the four most common cancers – breast,lung, colorectal and prostate – accountedfor over half of all new cases• breast cancer accounted for one in threenewly diagnosed cases of cancer amongwomen• prostate cancer accounted for one in fournewly diagnosed cases of cancer amongmen.1.3 The incidence figures since 2000 are setout below. Incidence is predicted to increase byaround a third between 2001 and 2020, andhence the importance of services planning tomeet this extra demand.Year Number of new cancer cases Males Female2006 242,200 121,600 120,6002005 239,000 119,600 119,4002004 233,600 117,800 115,8002003 227,400 112,700 114,7002002 223,800 112,600 111,2002001 224,600 112,500 112,1002000 223,500 111,500 112,000Source: oNS <strong>Cancer</strong> Registration Statistics for EnglandFigures have been rounded up to the nearest hundred


6 CANCER REFoRM STRATEgyMortality1.4 As the table below shows, cancermortality continues to fall. The latest figures,which were published in october 2008, showedthat the three-year average mortality rates forcancer (ages under 75) for England have fallenby 18.2% since the baseline. We are on courseto meet our target of a reduction of at least20% in cancer death rates in people under 75by 2010.<strong>Cancer</strong> Mortality TargetDeath rates from All <strong>Cancer</strong>s in England 1993-2007 and target for the year ‘2010’Persons under 75Death rate per 1000,000 population160141.21401201008060402001993/94/951994/95/96Progress since baseline:A fall of 18.2%115.5113.01995/96/971996/97/981997/98/991998/99/20001999/2000/012000/01/022001/02/032002/03/042003/04/052004/05/062005/06/072006/07/082007/08/092008/09/102009/10/113 year averagebaseline Progress targetTarget: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.Source: ONS (ICD0 140-209; ICD10 C00-C97)Prevalence1.5 <strong>Cancer</strong> prevalence refers to the number ofpeople who have previously received a diagnosisof cancer and who are still alive at a given pointin time.1.6 Information about prevalence waspublished for the first time in July 2008.This shows that there are about 1.6 millioncancer survivors in England; 10% of people aged65+ are cancer survivors; and the number ofcancer survivors is increasing by 3.2% each year.Detailed information is available on the National<strong>Cancer</strong> Intelligence Network (NCIN) website(www.ncin.org.uk), but the table below sets outhow prevalence is changing over time.Trends in prevalence of all malignant neoplasms (ICD-10 C009-C97 excl. C44)England, 1971-2004 (with predictions to 2008)Prevalence count1600000140000012000001000000800000600000400000● 1-year● 5-year● 10-year● 15-year● 20-year● 25-year● 30-year– – – prediction 1y– – – prediction 5y– – – prediction 10y– – – prediction 15y– – – prediction 20y– – – prediction 25y– – – prediction 30y200000019711972197319741975197619771978197919801981198219831984198519861987198819891990199119921993199419951996199719981999200020012002200320042005200620072008Source: National <strong>Cancer</strong> intelligence NetworkYear of census


CHAPTER 1: THE CHAllENgE oF CANCER7One-year survival1.7 Recently published data on one-yearsurvival shows that there is a consistentimprovement in one-year survival over the 20years up to 2004. For 15 of the 22 site groups,the improvement was statistically significant andwas seen for types of cancer with underlyingpoor (eg pancreatic increasing from 12.3 to15.8%), intermediate (eg colorectal increasingfrom 63.1 to 71.9%) and good (femalebreast increasing from 88.9 to 95%) one-yearprognoses. of the eight remaining cancer sitegroups, three (lung, testis and leukaemia) doshow clear but modest improvements in survivalthat are not statistically significant. Three cancersite groups (cervix, the combined group of“eye, brain and central nervous system” andHodgkin’s disease) show no change in survival.In the coming year, attention will need to begiven to those cancer sites for which there hasbeen no or limited improvement.1.8 The figure below shows trends in oneyearsurvival rates for three common cancersbetween 1985 and 2005. For each cancer type(breast, colorectal and lung) there has been asteady increase in one-year survival. Furtherdetailed analyses are available on the National<strong>Cancer</strong> Intelligence Network website(www.ncin.org.uk).% relative survival100.0090.0080.0070.0060.0050.0040.0030.0020.0010.00.00Trends in one-year cancer survival 1985-2005198519861987198819891990199119921993199419951996Year of diagnosisDotted lines show 95% confidence intervalsData source: National <strong>Cancer</strong> Information Service accessed November 2008– Breast (female)– Colorectal (persons)– Lung (persons)199719981999200020012002200320042005


CHAPTER 2: PREVENTINg CANCER 92.6 In May of this year, the DH published theConsultation on the Future of Tobacco Control,which is the first step in developing a newnational tobacco control strategy. It covered fourmain areas: reducing smoking rates and healthinequalities caused by smoking; protectingchildren and young people from smoking;supporting smokers to quit; and helping thosewho cannot quit. About 96,000 comments havebeen received – and most of them were verysupportive of further tobacco control measures.The DH plans to publish the new strategy in2009: from the <strong>Cancer</strong> Programme’s perspective,we will be feeding into the development of thatstrategy in the hope that we can achieve furtherreductions in smoking, which will help reducecancer deaths from smoking.Obesity, diet and physical activity2.7 obesity has links with certain cancers,particularly endometrial, breast and colon. 10%of all cancer deaths among non-smokers arerelated to obesity (30% of endometrial). The CRShighlighted that the planned strategy to tackleobesity would be important in cancer prevention.2.8 In January 2008, the governmentpublished Healthy Weight, Healthy Lives:A Cross-Government <strong>Strategy</strong> for England,with £372 million in funding. This laid out thegovernment’s ambition to be the first majornation to reverse the rising tide of obesity andoverweight in the population, by enablingeveryone to achieve and maintain a healthyweight. The initial focus will be on children:by 2020, the government aims to reduce theproportion of overweight and obese childrento 2000 levels.2.9 The <strong>Strategy</strong> set out a frameworkfor action in five main areas: promotingchildren's health; promoting healthier foodchoices; building physical activity into ourlives; supporting health at work and providingincentives more widely to promote health; andproviding effective treatment and support whenpeople become overweight or obese. It is stillearly days in terms of delivering outcomes, butthis is a significant strand of work for reducingthe risk of cancer. In November 2008, thegovernment launched the Change4life coalition.It is a lifestyle revolution involving thousands oflocal organisations and charities which will helpfamilies eat well, move more and live longer.Under the banner Change4life, the governmentis aiming to galvanise support from everyone inthe country from grass roots organisations toleading supermarkets and charities.2.10 Physical activity is associated with areduction in overall risk of dying from cancer.For example, physical activity has a protectiveeffect on colon cancer, with an average riskreduction of 40-50%. The DH is workingacross government to develop a new strategyfor physical activity, which builds on thecommitment for 2 million more active adultsby 2012 contained in the 2012 legacy ActionPlan. The DH is also working on a PhysicalActivity Care Pathway to embed the promotionof activity in general Practice, through theidentification of inactive patients and signpostingindividuals to community-based opportunities forphysical activity.Alcohol2.11 Regular drinking above recommendeddaily limits (2-3 units for women, 3-4 units formen) increases the risk of a number of cancers,such as cancer of the mouth and throat, thedigestive system, the liver and breast. Publicunderstanding of these risks is low, whencompared with awareness of harms suchas liver cirrhosis.2.12 In May 2008, the DH launched itsKnow your limits “Units” campaign, to helppeople understand how many units are in thealcohol they drink and the link between alcoholconsumption and their health, including cancerrisks. The government has an agreement withthe alcohol industry that they will include healthand unit information on all alcoholic drinkslabels by the end of 2008. Interim monitoringof implementation has been disappointingand the government has just completed apublic consultation (Safe, Sensible, Social –consultation on further action) asking whetherthe government should take the next steps tomake it a legal requirement to include healthand unit information on all bottles and cans. Theconsultation also asks what else could be done


CHAPTER 2: PREVENTINg CANCER 11Box 1: Use of sun beds by young peopleA scoping study on the use of sun beds by young people has been completed. The sample sizefor the scoping study was small, and the results therefore need to be viewed with caution, butthey were enough to prompt us to commission a larger survey to probe some of the results. Thissurvey will report in 2009. The headline results from the scoping survey were:• around a quarter of adults across great Britain have used a sun bed (around 32% ofwomen and 15% of men)• around 6% of young people (11-17 year olds) have used a sun bed (around 9% of girls,2% of boys)• around 18% of young people said they had not yet used sun beds but would considerdoing so in future• around 16% of young sun bed users reported having used a sun bed in an unsupervisedsetting• in the city populations examined, around 11% of 11-17 year olds had used sun beds• variation in use was recorded across the six cities studied – in liverpool, for example, around22% of 11-17 year olds questioned had used a sun bed; another 15% had not used a sunbed but would consider doing so in future• generally, the prevalence of sun bed use was significantly higher in 15-17 year oldscompared to 11-14 year olds; in liverpool around 39% of 15-17 year olds had used a sunbed compared to around 10% of 11-14 year olds.Box 2: Tackling skin cancer<strong>Merseyside</strong> and Cheshire <strong>Cancer</strong> Network launched their <strong>Cancer</strong> Early Detection and Prevention<strong>Strategy</strong> in January 2008. The <strong>Strategy</strong> focuses on 5 key themes: social marketing, staging,screening, healthy schools and symptom awareness.The main progress on the project is as follows:• all PCTs signed up to improve skin cancer prevention and to reduce mortality• development of an e-learning healthy schools project on use of sun beds by young people –in collaboration with a range of interested stakeholders, including <strong>Cancer</strong> Research UK, localauthorities, National <strong>Cancer</strong> Action Team, Health Protection Agency and Healthy Schoolscoordinators• use of social marketing techniques to identify populations to target for skin cancerprevention messages• working in partnership with <strong>Cancer</strong> Research UK to pilot a SunSmart campaign across<strong>Merseyside</strong> and Cheshire.• developing a Health Bus initiative that targets areas of need within the Network: the projectraises awareness of cancer symptoms and risks, with an emphasis on skin cancer prevention,to a variety of groups within the community and workplace.


12 CANCER REFoRM STRATEgyAwareness of general risk factors2.21 Researchers funded by <strong>Cancer</strong> ResearchUK have developed a tool to measure publicawareness of the risk factors and symptoms ofcancer (see also chapter 3). The awareness toolhas been used to undertake the first nationalsurvey of awareness, and the tool will soon beavailable to <strong>Cancer</strong> Networks and PCTs wishingto survey their own populations, to obtain amore detailed local picture.2.22 The data from the use of this toolwill enable those planning interventions orcampaigns to raise awareness of risk factors tounderstand the level of public knowledge beforean intervention and, when the survey is re-runafter an intervention, to assess whether theintervention had the intended result.2.23 An example of a local survey run by theHealthy Communities Collaborative, whichhelped inform testing of the awareness tool,was published on 29 August 2008 in the BritishJournal of general Practice – see box 3.Box 3: Survey of patient awareness of risk factorsA survey was carried out in eight general practices in Northern England. Adult patientsattending in December 2007 or January 2008 were asked to select six from twelve possible riskfactors. As well as the six risk factors, six false ones were included. 1556 questionnaires werereturned. The mean number of risk factors selected was 5.6.Putative risk factorNumber marking thisfactor increases cancer(n=1,556)Percentage marking thisfactor increases cancerRisk factors associated with cancerSmoking 1,486 96Exposure to sunlight 1,288 83Being overweight 1,082 70Excessive alcohol 1,054 68lack of fresh fruit/veg. 654 42Not taking regular exercise 619 40Risk factor debatably associated with cancerExposure to traffic fumes 813 52Risk factor with little or no scientific supportExposure to microwaves 554 36lack of iron in the blood 487 31lack of vitamin C 405 26Eating spicy food 142 9Drinking very hot drinks 105 7our results suggest publicity about smoking has worked. Similarly, excess sun exposure, excessalcohol use and being overweight are now generally recognised as risk factors. less encouragingwas the relatively low level of knowledge about diet and exercise. This suggests a new directionfor cancer prevention campaigns. A significant proportion considered both traffic fumes andmicrowaves to be risk factors. Although scientific evidence does not support these, both havealso had considerable media coverage.Reference: Knowles, J, Hamilton W; Knowledge of risk factors in cancer. BJgP, 2008, 58, 650-651


CHAPTER 2: PREVENTINg CANCER 132.24 High Quality Care For All said that:“every primary care trust will commissioncomprehensive wellbeing and preventionservices, in partnership with local authorities,with the services offered personalised to meetthe specific needs of their populations. ourefforts must be focused on six key goals: tacklingobesity, reducing alcohol harm, treating drugaddiction, reducing smoking rates, improvingsexual health, and improving mental health.”Implementation of this will be an important partof the prevention agenda.Vaccination and cancer2.25 The Human Papillomavirus (HPV)vaccination programme, which protects againsttwo strains of HPV that cause over 70% of casesof cervical cancer, commenced in September2008 for girls aged 12-13. A major publicitycampaign utilising TV/radio adverts, magazinesand newspapers is currently underway.2.26 The cost savings derived from choosingcervarix over gardasil as the vaccine for thenational programme enabled the implementationof a three year catch up programme. The catchupprogramme commenced in September 2008and will offer the vaccine to other older girlsaged 13-18.2.27 The CRS Advisory Board has brought toour attention the need to link a person’s HPVvaccination status with the cervical screeningprogramme records. This is an issue that DH willbe taking forward over the coming year.Genetic predisposition and cancer2.28 The CRS said that we wanted people whowere concerned about their family history ofcancer to have access to cancer genetic serviceswith high quality risk assessment and counsellingservices and that, following evaluation ofpilot sites, the DH would provide guidance tocommissioners on how to commission theseservices.2.29 A BMJ learning Module has beendeveloped. The module, entitled <strong>Cancer</strong> andgenetics: an up-to-date guide, is designed togive gPs, practice nurses, hospital consultants,and doctors in training a basic understanding ofcancer and genetics. The module was launchedin october 2008 – see box 4.Box 4: Advice to clinicians on geneticpredisposition“I have worked as a gP and as a primarycare geneticist based in a regional geneticsdepartment. As a gP I felt uncertain abouthow to deal with patients who wereconcerned about a family history of cancer.As a primary care geneticist I realised thatgeneralists could develop the skills to dealwith these patients.”Fred Kavalier, author of BMJ learningModule <strong>Cancer</strong> and genetics: an up-to-dateguide2.30 A “Community of Practice” has beenestablished to learn and share best practice. ThisCommunity of Practice for Family <strong>Cancer</strong> HistoryServices has been set up with Macmillan <strong>Cancer</strong>Support to share the learning from the pilots.Membership stands at around 40, comprisingof clinicians from the pilot studies, service users,senior figures in the national cancer geneticsfield and DH and Macmillan colleagues. Actionsfor 2009 are:• developing and sharing widely theprofessional and organisational knowledgegained from the Macmillan/DH pilotsprogramme• influencing and accelerating improvementin family cancer history services nationally,through connecting with local, regional andnational professional and other networks,including NHS commissioning• increasing the personal professionaleffectiveness of individual Community ofPractice members as service practitioners.2.31 A chapter on services for peoplewith a genetic predisposition to cancer isbeing developed for inclusion in the <strong>Cancer</strong>Commissioning guidance which will be publishedshortly – see chapter 9. We are working with


14 CANCER REFoRM STRATEgyexperts in the field to develop the chapter, whichwill be available in early 2009.Research in cancer prevention2.32 Several important initiatives are underwayto strengthen research in cancer preventionand build an evidence base to inform policyand support the implementation of effectiveinterventions to reduce cancer risk andencourage behaviour change.2.33 The CRS reported on the NationalPrevention Research Initiative (NPRI), a UKwideinitiative 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. NPRI-fundedstudies are exploring a range of approachesto promoting positive health behaviour, toencourage people to avoid habits that increasetheir risk of cancer and to follow a healthy dietand physical activity programme.2.34 The CRS also outlined plans by themajor funders of public health research (underthe auspices of the UK Clinical ResearchCollaboration – UKCRC) to fund a number ofPublic Health Research Centres of Excellence inthe UK. Five successful Centres across the UKhave been awarded funding:• North East Centre of Excellence forTranslational Research in Public Health,Newcastle University – directed by ProfessorM White• Centre for the Development and Evaluationof Complex Interventions for PublicHealth Improvement, Cardiff University (incollaboration with Swansea University andBristol University) – directed by Professorl Moore• UKCRC Public Health Research Centre ofExcellence, Queens University Belfast –directed by Professor F Kee• Diet and Physical Activity Public HealthResearch Centre, Cambridge, University ofCambridge – directed by ProfessorN Wareham• The UK Centre for Tobacco Control Studies,University of Nottingham – directed byProfessor J Britton.


15Chapter 3:Diagnosing cancer earlierProgress:• Pilots developed to look at how to increase the uptake of cervical screening amongyounger women• guidance sent out on 14-day turnaround for cervical screening and pilots underway• Further improvements in quality of testing for cervical cancer• Nearly 2,000 bowel cancers detected by screening so far• National Awareness and Early Diagnosis Initiative launched• National survey of awareness of symptoms• ovarian cancer key messages launched• Audit of diagnosis of cancer in primary care under wayPriorities for the coming year:• Piloting of extension of breast cancer screening• Digital mammography to be introduced nationally• Further rollout of bowel cancer screening• Revised informed choice packs to be launched for prostate cancer• Further work to promote better awareness of symptoms• Completion of first round of audit of diagnosis in primary care, and then furtherengagement with primary care to help achieve earlier diagnosis• More local work on raising awareness of symptoms• More work to improve gP access to diagnosticsIntroduction3.1 Evidence suggests that later diagnosis ofcancer has been a major factor in the poorersurvival rates in the UK compared with othercountries in Europe. The <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong>(CRS) set out a range of actions to promote earlierdiagnosis of cancer, and this chapter reports onprogress and on the plans for the future.Improving cervical screening3.2 The CRS set out a plan of action toincrease uptake of screening, to minimise thetime taken to get results back to women andto use new technologies.


16 CANCER REFoRM STRATEgy3.3 To tackle problems around uptake ofscreening, six Primary Care Trusts (PCTs) havebeen selected to work with the NHS CervicalScreening Programme and the ImprovementFoundation (IF) to develop and test initiativeswhich aim to improve the uptake of cervicalscreening in women aged 25-35 in these localcommunities. They are using social marketingtechniques and, once the different possibleinitiatives have been evaluated, the resultswill be disseminated.3.4 To incentivise services to encourage highercoverage, the decision has been taken to havea tariff for cervical screening (along with breastand bowel screening).3.5 To help reduce the time taken to getresults back to women, guidance to the NHSon achieving the 14-day turnaround timewas issued in April 2008, in preparation fordelivering the required turnaround by 2010. NHSImprovement is now working with ten areason how best to streamline the pathway frominitial test to getting the results. This is part of athree-year programme of work which will involveimprovements across the whole of the cervicalscreening pathway to enable women to get theirresults sooner.3.6 As the CRS reported, prior to theintroduction of new technology (liquid basedcytology – lBC), rates of inadequate sampleswere over 9% resulting in about 300,000women a year being screened again. In october2008, rollout of lBC across the country wascompleted. As lBC was rolled out, the rateof inadequate samples has fallen every yearand is now at a record low of just under 3%or fewer than 100,000 women (last year’sfigure was 4.7%). This means that in 2007/08,200,000 women did not have to have a repeattest because their original sample could notbe read, with all the anxiety that entails.3.7 In terms of making the best use of newtechnologies, we have now moved forwardinto the implementation phase of HumanPapillomavirus (HPV) triage for women withborderline and low-grade abnormalities usingHPV testing. Work has begun in six screeningservices. We will be able to deliver healthservices targeted more appropriately, reducingthe need for significant numbers of repeat tests.Improving breast screening3.8 The CRS set out plans to maintain andextend this country’s excellent record on breastscreening.3.9 In terms of the age extension of breastscreening to women aged 47-73 years,arrangements have been made with six breastscreening centres to pilot the rollout. Activitywill commence in these sites from January2009. These areas will meet strict quality andperformance criteria and will also act as alearning platform to enable remaining servicesto model their rollout plans.3.10 The NHS is committed to conversion todirect digital mammography for use throughoutthe NHS Breast Screening Programme. Thisequipment is now available in a number of sitesand a national framework agreement has beennegotiated to enable easier acquisition of thisequipment by the remaining services. Advice tothe service on digital mammography and all theCRS breast screening initiatives will be issuedshortly. The CRS Advisory Board has expressed itsconcern to ensure that the funding provided fordigital mammography is used for that purpose,and the Board will be considering progress withits introduction in the Spring of 2009.3.11 The following are being taken forwardto improve surveillance of women identified asbeing at high risk:• guidance on quality assurance for magneticresonance imaging (MRI) is in developmentby the Royal College of Radiologists Breastgroup and the NHS Breast ScreeningProgramme Quality Assurance Radiologistsgroup: this will include good practicestandards to be achieved and workloadcriteria• a functional specification is being preparedfor a new module on the National BreastScreening System in order to managethese women


CHAPTER 3: DIAgNoSINg CANCER EARlIER17• the detailed protocol to implement theNational Institute for Health and ClinicalExcellence (NICE) guidance on familial breastcancer is being refined.Improving bowel screening3.12 The CRS’s main focus in this area wason the continuing rollout and extension of thebowel screening programme. Eventually, allmen and women from age 60 to 75 will beinvited for screening.3.13 As at November 2008, 40 screeningcentres were operational. 107 PCTs (70%)have 100% rollout. Nearly 1.3 m kits had beenreturned, with nearly 2000 cancers detected.over 7000 people have, as a result of screening,had polyps removed.3.14 We have already begun the phasedexpansion of the bowel cancer screeningprogramme to people aged 70-75, startingin six sites.Screening for other cancers3.15 As highlighted in the CRS, we are revisingthe informed choice packs for prostate cancer.In order fully to take on board the opinions andideas of key stakeholders, the revision has beenslightly delayed and the new Prostate <strong>Cancer</strong>Resource Management Programme pack will belaunched early in 2009.3.16 In terms of research into screeningother cancers, major trials into prostatecancer screening are underway nationally andinternationally, and are due to report in the nexttwo to four years. The UK National ScreeningCommittee, the body that keeps screening forprostate cancer closely under review, will becarefully monitoring the results of the trials.A major national trial of screening for ovariancancer – the UK Collaborative Trial of ovarian<strong>Cancer</strong> Screening – is due to report its mainfindings in 2012. The Department of Health(DH), through its National Institute for HealthResearch (NIHR) Health Technology AssessmentProgramme, has funded research on thefeasibility of a UK trial of computed tomography(CT) screening for lung cancer.Raising public awareness of cancersymptoms and encouragingpeople to seek help early3.17 The CRS included a commitmentto establish a National Awareness and EarlyDiagnosis Initiative (NAEDI), to coordinatea programme of activity to support localinterventions to increase cancer symptomawareness and encourage earlier presentation.NAEDI is co-chaired by Harpal Kumar, ChiefExecutive of <strong>Cancer</strong> Research UK, and MikeRichards, the National <strong>Cancer</strong> Director, andwas formally launched in November 2008.3.18 There are currently seven work streams:• review of evidence base on awareness andearly diagnosis• measuring awareness• interventions to promote early presentationsby patients• interventions in primary care• international benchmarking• prospective research• key messages.3.19 As reported in the CRS, to supportthe initiative, researchers funded by <strong>Cancer</strong>Research UK have developed a generic andmodular assessment tool to assess public levelsof awareness of cancer symptoms (along withrisk factors, see chapter 2). The DH has fundedthe office for National Statistics to use thegeneral tool to carry out the first national cancersymptom awareness survey – see box 5 for thefirst results. The survey will be repeated everytwo years, and the results published. This willenable change over time to be monitored andimpact of interventions to be evaluated.3.20 As explained in chapter 2, the plan is forthe NHS locally to use the tool to assess risk andsymptom awareness, as a benchmark for localwork and in order to monitor improvements.


18 CANCER REFoRM STRATEgyBox 5: Awareness of cancer symptoms – survey resultsProfessor Jane Wardle of UCl, in collaboration with Dr Joan Austoker, Professor AmandaRamirez, Dr Una Macleod, Dr Kathryn Robb, Dr Jo Waller and Sarah Stubbings, has developed avalidated measure of public awareness of cancer to be used for surveillance, examining gender,socioeconomic, ethnic and geographic inequalities, and evaluating the impact of interventions.The <strong>Cancer</strong> Awareness Measure (CAM) assesses knowledge of “warning signs” for cancer,anticipated time to seek medical advice, barriers to seeking medical advice, knowledge of riskfactors, and awareness of cancer incidence and national cancer screening programmes.Formal psychometric procedures were followed to create a validated measure. The existingliterature was reviewed and expert advice sought to create an item pool, which was reducedthrough iterations of expert consultation and informal testing. Cognitive interviewing was usedto check face validity, with subsequent modification to phrasing of some items. Reliability wasassessed by repeating the measure on two occasions one week apart; and it was high. Externalvalidity was checked by demonstrating that test scores were significantly higher in cancerexperts than equally-senior, non-medical academics. Sensitivity to change was demonstratedby showing that test scores in a volunteer sample increased significantly following a simpleeducational intervention.Data from a population-representative sample are being collected as part of the office ofNational Statistics omnibus Survey, and ethnic differences are being examined through a surveyconducted by Ethnibus. Preliminary results from the first half of the population data reveal lowawareness of “warning signs” and significant socioeconomic inequalities. The most prominentbarriers to seeking medical advice included fear about the results and worries about wastingthe doctor’s time. Awareness of risk factors indicated continuing high awareness of the risk ofsmoking, improved recognition of cancer risks associated with overweight and sun exposure– perhaps related to recent campaigns, but low awareness of other risk factors, along withcontinuing social inequalities.3.21 The CRS mentioned the importance ofhaving key awareness messages for differentcancer types which could be used to supportstakeholders when they are developingawareness campaigns, for example during lung<strong>Cancer</strong> Awareness Month. over the past year,the DH has being working with stakeholdergroups to review the key messages for lungcancer, and develop a new set of messages forovarian cancer. The ovarian cancer key messageswere launched on 6 october – see box 6.3.22 The Improvement Foundation (IF)has been running a Healthy CommunitiesCollaborative on cancer awareness in ten pilotareas for the past year, and have now startedwork with a further ten areas. All of the sites,which are based in Spearhead PCTs, have beenundertaking targeted interventions to improveawareness of the signs and symptoms of breast,bowel and lung cancer, and to encourage thosewith symptoms to visit their gP.3.23 Early signs suggest that there has beena better uptake of bowel screening in the PCTsrunning a Healthy Communities Collaborative,compared with other Spearhead PCTs. This maybe a reflection of the fact that many of the sitestargeted the rollout of bowel screening in theirlocal area in their work.


CHAPTER 3: DIAgNoSINg CANCER EARlIER19Box 6: Ovarian cancer – key messages for members of the publicovarian cancer is the fourth most common cancer in women, but to put this in perspective, theaverage gP sees only one case of ovarian cancer every five years. The risk of ovarian cancer doesincrease with age and particularly after the menopause.Cervical screening tests -sometimes known as smear tests -will not help to detect ovarian cancer.The good news about ovarian cancer is that if diagnosed at an early stage, the outcome is good.However, because some of the symptoms of ovarian cancer are similar to those seen in morecommon conditions, it can be difficult to diagnose. Most women are not diagnosed until thedisease has spread, which is why it is important that women know about the symptoms, so thatthey can seek advice as early as possible.ovarian cancer was once known as a “silent” disease in that the symptoms can be vague, butevidence now shows that any of the following three symptoms, if they occur on most days,can suggest ovarian cancer. This has led for the first time to some of the UK’s leading cancercharities, scientists and doctors agreeing that the following three symptoms are more frequentin women diagnosed with ovarian cancer:• persistent pelvic and abdominal pain• increased abdominal size/persistent bloating – not bloating that comes and goes• difficulty eating and feeling full quickly.occasionally other symptoms such as urinary symptoms, changes in bowel habit, extremefatigue or back pain may also be experienced on their own or at the same time as those listedabove. Again, it is most likely that these symptoms are not ovarian cancer, but may be present insome women with the disease.If you regularly experience any of these symptoms, which are not normal for you, it is importantthat you see your gP. It is unlikely that your symptoms are caused by a serious problem, but it isimportant to be checked out. you should also mention if there are two or more cases of ovarianor breast cancer in your close family, as ovarian cancer can sometimes run in families. If youhave already visited your gP and the symptoms continue or worsen, it is important to return andexplain this to your doctor – you know your body better than anyone.Remember, ovarian cancer is uncommon and early diagnosis may save lives.3.24 Evidence on the effectiveness of thesecollaboratives is inconclusive at this stage.The IF will continue to collect and analyse datafrom the sites. This will set out the impactthat the local interventions have had on thekey measures.3.25 The initial ten sites showcased their workat a Healthy Communities Collaborative eventin Blackpool in September 2008 – see box 7for information about what the “Marketplace”demonstrated.3.26 The Football Foundation have developeda pilot to raise awareness of the signs,symptoms and risk factors of bowel, lung andprostate cancer in men aged over 55. The pilot,supported by funding from the DH, will bedelivered in football clubs and community-basedprojects delivering football activity through theFootball Foundation’s local engagement work.


CHAPTER 3: DIAgNoSINg CANCER EARlIER21other diagnostic tests. In addition, waiting timesdata for all other diagnostic tests are collectedthrough a quarterly census.3.33 The NHS has made excellent progressin reducing waits for diagnostics over the pasttwo years. For example in April 2006, based onthe 15 key tests, there were 404,000 six weekplus waits. In March 2007, this had reducedto 243,000 and based on the latest publisheddata for September 2008, has fallen to 6,600.The median waiting time for a diagnostic testhas decreased to 1.6 weeks in September 2008,from 6.1 weeks in April 2006 when data werefirst published.3.34 Commissioning world class imagingservices is fundamental to providing highquality care to patients. To support PCTs inthis aspect of their role, and as part of the 18weeks programme, the National Imaging Boardhas developed an interactive toolkit to supportcommissioners of imaging services. The toolkitaims to bring together a number of resourcesabout diagnostic imaging eg workforce, clinicalgovernance, safety and radiation etc in oneeasy and convenient reference tool: http://www.18weeks.nhs.uk/Content.aspx?path=/achieve-and-sustain/diagnostic/imaging/commissioning-guidance.3.35 In addition to the web based world classcommissioning tool, a dedicated imaging servicesweb forum has also been established. The forumis designed to allow PCTs to share best practicewith colleagues across the country, and shareideas and experiences on service redesign.3.36 Despite these very significantimprovements in diagnostics, the CRS AdvisoryBoard is of the view that further improvementscan be made in gPs’ access to the necessarydiagnostics. As the CRS said, greater accessis needed both to diagnostic tests for initialinvestigations, mainly to exclude cancer, andto specialist diagnostic services for patientswith a high chance of cancer. In response tothis concern it has been agreed that cancerdiagnostics should be added as an eighthwork stream within the National Awarenessand Early Diagnosis Initiative.


22 CANCER REFoRM STRATEgyChapter 4:Ensuring better treatmentProgress:• <strong>Cancer</strong> waiting times: preparation for new standards and new data collection methodology• Further increase in uptake of cancer drugs and reductions in geographical variations in drugusage• Further training for laparascopic surgery for colorectal cancer launched• Radiotherapy action plansPriorities for the coming year:• Delivery of new waiting time standards• Transfer to new local and central data collection methodologies• Further implementation of the Improving outcomes guidance• Building up radiotherapy capacity and workforce• Tackling problems related to quality and safety of chemotherapy servicesIntroduction4.1 As the <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> (CRS)emphasised, treatment for cancer has improvedconsiderably over the past decade. The CRSbuilt on that progress with a series of actionsto deliver faster and better treatment. Thischapter reports on further progress and on thechallenges ahead.Going further on cancer waits4.2 latest figures (Q2, 2008/09) show that thecurrent standards for cancer waiting times aredelivering the following:• 99% of patients are seen within two weeksfrom urgent gP referral to outpatientappointment• 99% of patients are treated within 31 daysfrom diagnosis to treatment for breast cancer• 97% of patients are treated within 62 daysfrom urgent gP referral to treatment for allcancers.4.3 This is a significant achievement,representing a great deal of hard work by NHSstaff. However, as set out in the CRS, the aimnow is to extend the benefits to a wider rangeof patients. The new commitments are:• the two week wait standard will apply toall patients referred with breast symptoms,who will be seen within two weeks, whethercancer is suspected or not• to be implemented from the endof 2009


CHAPTER 4: ENSURINg BETTER TREATMENT23• the 31 day standard will apply to alltreatments for cancer, including after arecurrence• to be implemented from the end of2008 for surgery and drug treatment,and from the end of 2010 forradiotherapy and other treatments• the 62 day standard will apply to all patients− referred from NHS <strong>Cancer</strong> ScreeningProgrammes (breast, cervical and bowel)− deemed urgent by their consultant as wellas those referred urgently by a gP• to be implemented from the endof 2008.4.4 Since publication of the CRS, the NHShas been working to implement these standards.The National <strong>Cancer</strong> Action Team (NCAT)is supporting Strategic Health Authorities(SHAs) to ensure delivery of the extendedstandards. In terms of the new standards forDecember 2008, the data to show whetherthey have been met will be published in May2009, but there will be some tracking datain advance of that which will indicate thedirection of travel.4.5 The Department of Health (DH),Connecting for Health and the NCAT aredeveloping a new performance recording andreporting system to support the new standards.<strong>Cancer</strong> treatment providers will no longer haveto collect information about the intervals whencancer patients are unfit to undergo proceduresor when patients take time to consider treatmentdecisions, in order to make adjustments to thecalculated waiting times (this change has beenassured by the Information Standards Boardfor Health and Social Care and communicatedvia DSCN 20/2008). When these changes areimplemented from 1 January 2008, theseadjustments will no longer be used to calculateperformance against the cancer waiting timestandards. This will bring cancer waiting timesdata into line with 18 weeks data and:• reduce the burden of data collected for nonclinicalpurposes• streamline the data collection process fortreatment providers• bring cancer waiting times data into themainstream of NHS performance dataprocesses (ie under the 18 weeks model)• support patient choice and clinical autonomy(not every patient wants to be treated withinthe standard time, and not every patient canbe).4.6 Because the data collection rules willbe more consistent with the 18 weeks datacollection rules, there will need to be a changein the operational standards for both the currentand new waiting time standards, in order topreserve time for patients to consider treatmentoptions and to reflect good clinical practice (ie thefact that some patients cannot be appropriatelytreated within these timescales). <strong>Report</strong>edperformance against the current standardswill change because of the new rules:• performance against the existing two-weekstandard (for urgent referral to a specialist)is 99+%, against an operational standardof 98% – we expect reported performancewill move to about 93%• performance against the existing 31 daystandard (from diagnosis to treatment) is99+%, against an operational standard of98% – we expect reported performance willmove to about 98%• performance against the existing 62 daystandard (from referral to treatment) is 97+%against an operational standard of 95% – weexpect reported performance will move toabout 86%.4.7 The changes are designed to reduce theburden of information collection on the NHS.The standard remains that, as previously, 100%of cancer patients who are willing and able todo so will be treated within the timescales setout in the CRS (and the NHS <strong>Cancer</strong> Plan).


24 CANCER REFoRM STRATEgy4.8 The cancer treatment waiting timesstandards are designed to highlight andeliminate unnecessary waits from the system,whilst supporting patient choice and clinicalpriority.4.9 NHS Improvement will be producing animprovement guide for going further on cancerwaits in the New year, and will be providingsupport to SHA leads through <strong>Cancer</strong> Networkservice improvement teams.Improving Outcomes Guidanceimplementation4.10 The CRS emphasised the importance ofimplementing the Improving outcomes guidance(Iog), in order to see further improvements inthe outcomes of complex cancer surgery.4.11 Action plans for implementation havebeen developed in several phases, as part of thelocal Delivery Plan process. The first four services(gynaecology, upper gastro-intestinal, urology andhaematology) were due to be fully implementedby December 2007. The overall summary ofprogress by December 2007 confirmed goodprogress had been made with the exceptionof a small number of health economies, wheresupport is now being provided by the NCAT. Forhaematological malignancies, a particular problemwas identified in relation to the development ofspecialist haematopathology services in line withthe relevant Iog. During 2008, most <strong>Cancer</strong>Networks appear to have developed goodprocesses and put plans in place to deliver thiselement of the service. The NCAT is workingwith the Royal College of Pathologists to ensuresustainable services are developed in all SHAs.Box 8: Major surgery for prostate or bladder cancer – progress on specialisation1997/98–2006/07:• the number of major surgical procedures (prostatectomy or cystectomy) has more thandoubled over the past nine years (from 2041 in 1997/98 to 4532 in 2006/07): this is verylargely due to the increasing incidence of prostate cancer• the number of Trusts undertaking either of these procedures has decreased from 145 to 119• the number of Trusts undertaking fewer than ten procedures per annum has fallen from 65to 22 – and the percentage of all major surgical procedures undertaken in these “lowvolume” Trusts has fallen from 17% to 2%• in contrast the number of Trusts undertaking at least 40 major procedures per annum hasincreased from five to 54 and the percentage of all such procedures undertaken in thesehigh volume Trusts has increased from 12% to 77%.Prostatectomy or cystectomy for cancer• number of Trusts undertaking (per annum):1997/98 2006/071-9 procedures 65 2210-39 procedures 75 4340+ procedures 5 54• % of procedures taking place in Trusts undertaking (per annum):1-9 procedures 17% 2%10-39 procedures 71% 21%40+ procedures 12% 77%


CHAPTER 4: ENSURINg BETTER TREATMENT254.12 Progress on implementation can bemonitored through inspection of HospitalEpisodes Statistics. For example, progress oncentralising urological cancer services is shownin box 8. It is important to note that the mostrecent national figures available are for 2006/07and considerable further progress has beenmade since then.4.13 Specialist teams for head and neckcancers which treat more than 100 newpatients each year with improved communitysupport services are due to be in place by theend of December 2008. Four <strong>Cancer</strong> Networkshave implemented their plans ahead of thedeadline and a further 19 have confirmed thatthey expect to be compliant by the due date.Work will continue to reduce the risk with theremaining plans.4.14 Commitment was given in the CRS forfull implementation of the National Institute forHealth and Clinical Excellence (NICE) guidanceon supportive and palliative care (SPC) foradults with cancer. The intention had been forthis guidance to be fully implemented acrossthe country by December 2007. However,this guidance is particularly complex andwide ranging and the initial timetable forimplementation has overlapped with thedevelopment of other national strategy areas,such as end of life care and the Department ofHealth’s (DH) Common Assessment Framework,which needed to be taken into account as<strong>Cancer</strong> Networks took forward implementationof the SPC guidance. It was confirmed in theCRS that the deadline would be extended by12 months to December 2008. Networks willbe reporting on partial compliance by this date,with full implementation by December 2009.4.15 For the remaining Iogs, NCAT has beenworking closely with Specialised Commissioninggroups (SCgs) across the country and goodprogress has been made in developing servicesfor penile and testicular cancers that servepopulations of four and two million respectively.There has been significant progress made inconsolidating pancreatic surgery into fewercentres, but four SHAs do not yet have agreedplans. For skin cancer, most <strong>Cancer</strong> Networksnow have agreed plans. For sarcoma, eight outof ten SHAs have plans in place to consolidateservices, and there is confidence that these willall be fully implemented by December 2010.4.16 Principal Treatment Centres for children’scancers have now been approved by all SCgsexcept one where there is a review process underway. It is expected that services for young people(aged 16-24) will be established in the samecities. guidance has been developed for SCgsand <strong>Cancer</strong> Networks to ensure that all youngpeople aged 16-19 years benefit from beingreferred for treatment in a designated PrincipalTreatment Centre for young people, and that allyoung people aged 16-24 years inclusive shouldbe notified to a teenage and young adult multidisciplinaryteam (MDT), to be based at thesePrincipal Treatment Centres.4.17 The initial mapping of brain and centralnervous system services has been completed.However, issues have been identified by <strong>Cancer</strong>Networks that require further clarification withthe Iog development group, after which furtheradvice will be issued to the service.Laparoscopic colorectal surgery4.18 The CRS said that, in order to increase theuse of laparoscopic surgery for colorectal cancer,a pilot training programme would be establishedwhich would be fully evaluated for potentialnational rollout.4.19 A network of ten centres – including atotal of 16 hospitals – has been established totake this forward, with support from the relevantprofessional bodies. A clinical lead has beenappointed and a coordinating centre has beenset up to provide project support and businessmanagement to all training centres. ImperialCollege london are developing an educationalplatform to support the training that includescoordination of training methods, provision ofintegrated education material and competencebasedassessment against agreed criteria.4.20 To date 30 surgeons have been recruitedon to the programme and a further 30 haveexpressed interest. The programme is beingextended to include the potential for cadaverictraining prior to attending the main training.


26 CANCER REFoRM STRATEgyAn enhanced recovery training programme willalso be provided.4.21 The waiver of full implementation ofthe 2006 NICE technology appraisal related tolaparoscopic colorectal surgery will be reviewedin 2009. Trust Chief Executives are being madeaware of the benefits and impact of laparoscopicsurgery for colorectal cancer and are beingurged to allow surgical teams to attend thetraining as the waiver is likely to be lifted oncethe capacity to deliver laparoscopic surgery hasbeen increased through the programme.Radiotherapy4.22 one of the major commitments in theCRS was to deliver a step change in radiotherapycapacity to deliver a world-class service, with afirst key objective of meeting the new 31 daywaiting times standard for radiotherapy by theend of 2010.4.23 In response to this, <strong>Cancer</strong> Networkswere advised to prepare plans for increasingradiotherapy capacity in line with the goals setin the CRS. In assessing the challenges for thefuture, the CRS Advisory Board highlightedthat the long lead-in time for commissioningnew radiotherapy facilities means that action isneeded now to deliver the 2010 standard. MostSHAs and their <strong>Cancer</strong> Networks have sharedtheir plans with the NCAT. Feedback will begiven during December 2008.4.24 A radiotherapy capacity planning tool(R-PoRT) is being developed to help servicedepartments assess capacity and to modelworking patterns effectively. This is being pilotedin three radiotherapy departments before beingoffered to all centres in Spring 2009.4.25 It is the intention that, from April2009, radiotherapy fraction information willbe routinely collected, following full standardassurance by the Information StandardsBoards for Health and Social Care (ISB HaSC)and subsequent approval being granted bythe Review of Central Returns (RoCR) (thisinformation is collected voluntarily at present).This will allow Primary Care Trusts (PCTs) to trackhow access to radiotherapy is improving fortheir populations.4.26 The size of the radiotherapy workforce isincreasing, but more needs to be done in orderto keep pace with the increasing demand forradiotherapy. The CRS asked SHAs to developlong-term workforce strategies, including anurgent review of workforce supply, demandand skills mix to identify the investment neededin both staff numbers and types of trainingcommissions. The DH and NCAT will shortly bereviewing the progress being made by SHAs, sothat further support can be provided if necessary.4.27 The CRS highlighted the importance ofimproving learning experiences for therapeuticradiographers. Virtual Environments forRadiotherapy Treatments (VERT) are beingintroduced in radiotherapy training sites with theaim of reducing the current high attrition ratesamongst trainee therapeutic radiographers. Theimpact of this new approach on attrition andrecruitment will be evaluated by october 2009.A small working group has been established –chaired by the DH’s Chief Scientific officer –to look at the role of healthcare scientists inradiotherapy, with the intention of this initiativesupporting the development of the radiotherapyworkforce.Proton therapy and othertechnological advances4.28 The CRS said that, from April 2008,proton therapy for certain cancers would becommissioned from overseas by the NationalCommissioning group. This is now happening.It also said that the DH would consider optionsfor providing modern proton therapy servicesin this country. Work is being undertaken toestablish an agreed set of clinical indications forthis treatment and work up an outline servicespecification. A Proton Therapy Advisory grouphas been established to provide expert clinicaland scientific advice. We plan to have a draftoutline business case setting out the optionsfor the procurement of proton therapy servicesagainst this specification early in 2009.


CHAPTER 4: ENSURINg BETTER TREATMENT27Drug treatments4.29 Several major strands of work have beenundertaken over the past year to improve accessto new cancer medicines and to improve thequality and safety of chemotherapy services.Some of these are already bringing benefits topatients and further major improvements canbe expected over the next year. The key workstrands are:• a further update on the use across thecountry of cancer drugs approved by NICE• changes to the process by which cancerdrugs are appraised by NICE to give moretimely advice to the NHS• better local planning of chemotherapyservices• improving access to medicines for NHSpatients• publication of Chemotherapy Services inEngland: Ensuring quality and safety.Update on the use of cancer drugsapproved by NICE4.30 The first report on usage of cancerdrugs approved by NICE was published in 2004.This showed unacceptable variations in usagebetween <strong>Cancer</strong> Networks. This variation wasnot due to funding not being made availableby PCTs but was considered to be largely due tovariations in forward planning for chemotherapyand to variations in clinicians’ perceptions ofthe effectiveness of the drugs. A second reportissued in September 2006 showed a significantincrease in uptake of NICE approved drugs acrossthe country as a whole, together with reducedvariation in usage between <strong>Cancer</strong> Networks.4.31 A third analysis has now been undertaken,as promised in the CRS, based on drug usagein 2007/08 and using the same methodologyas before. There are 14 NICE approved drugsand four comparator drugs for which uptakefigures were included in both the second reportand latest evaluation. For 13 of the 14 NICEapproved drugs an increase in overall usagehas been observed (median 72% increase,range 4% to 286%). For seven drugs utilisationhas increased by 50% or more (trastuzumab,oxaliplatin, docetaxel, temozolamide, topotecan,vinorelbine and capecitabine). Usage hasdecreased for only one of the NICE approveddrugs (fludarabine -18%). This is likely to be dueto other drugs, such as rituximab, being usedin preference. Usage has increased for three ofthe four comparator drugs (carboplatin 15%,cisplatin 31%, epirubicin 15%), whole usage ofdoxorubicin has fallen by 4%.4.32 Variation in usage across the 30 <strong>Cancer</strong>Networks in England was once again assessedusing the ratio of the 90th percentile to the10th percentile of the distribution of usage byNetworks (in milligrams per head of population)ie for each cancer drug the 30 <strong>Cancer</strong> Networkswere ranked by their usage from highest tolowest, and the usage for the <strong>Cancer</strong> Networkat the 90th percentile (10% of Networks lieabove this point) and 10th percentile (10% ofNetworks lie below this point) were compared.This method excludes the results of Networks ateach extreme (ie very high and very low users).A higher 90th/10th percentile ratio indicatesgreater variation in usage across Networks.4.33 In 2005, variation in uptake was observedto have decreased for all NICE approved drugsand was generally quite similar to the variationin usage of the four comparator drugs (whichhad 90th:10th percentile ratios of 2.1-2.5).Variation in the usage of comparator drugs hasremained broadly static in 2007/08 (1.9-2.4).4.34 Further reductions in variation in usagehave been observed from 2005 to 2007/08 fornine of the 13 NICE approved drugs, which nowhave a variation of 1.6 to 3.2 (capecitabine,docetaxel, gemcitabine, imatinib, oxaliplatin,pegylated liposomal doxorubicin, rituximab,temozolomide and trastuzumab). The largestreductions in variation in usage were fortrastuzumab (44%), pegylated liposomaldoxorubicin (46%) and temozolomide (66%).4.35 For two drugs variation has remainedstable (irinotecan 2.5, paclitaxel 3.2). There was asmall increase in variation of usage for fludarabine(from 2.2. to 2.5). Variation in the usage of


28 CANCER REFoRM STRATEgyvinorelbine has increased from 3.1 to 5.0 despitean overall increase in usage of 72%.4.36 The CRS also mentioned action toimprove the information available to helpunderstand variations. The DH, with theNational <strong>Cancer</strong> Intelligence Network (NCIN)and other partners, continues to work on thedevelopment of a chemotherapy dataset. Interms of encouraging the use of e-prescribingto facilitate introduction of Healthcare Resourcegroup 4 (HRg4, the latest national currencysystem) for chemotherapy payment, during2006/07 Connecting for Health provided somecapital to allow NHS Trusts/<strong>Cancer</strong> Networksto purchase a system ahead of the IT solution.Sixteen bids were successful and these are beingimplemented. A financial module that maps toHRg4, developed as part of the ChemotherapyPlanning oncology Resource Tool (C-PoRT)project, is currently being tested within a <strong>Cancer</strong>Network with a view to rolling this out to allTrusts using C-PoRT during 2009.<strong>Cancer</strong> drug appraisal by NICE4.37 The CRS made the commitment that allnew cancer drugs and significant new licenceindications would be referred to NICE forappraisal provided that there was a sufficientpatient population and evidence for NICE toundertake an appraisal. The CRS also reflectedthe government’s existing commitment toensure that new cancer treatments are appraisedpromptly, using the faster Single TechnologyAppraisal (STA) process where appropriate.4.38 The DH has developed with NICE aprocess to deliver the CRS commitment of the"default" position on NICE's appraisal of newcancer drugs. The default option is that all newtreatments will be appraised in parallel with thelicensing process as far as is possible.4.39 Revised processes include changes toNICE’s arrangements for consultation on cancerappraisal topics and handling of Ministerial signoff. <strong>Cancer</strong> drugs included in the 19th workprogramme for NICE are the first to be handledunder the revised topic selection process toimplement the CRS commitment. By 2010 draftor final guidance for all new cancer drugs willbe available within six months, on average, of adrug being licensed.Supporting better local planning forchemotherapy4.40 The CRS reported on the developmentof the C-PoRT, which should help Trusts toensure that they plan for the safe introductionof new drugs in a thorough and cost-effectiveway. C-PoRT is currently in use in 22 <strong>Cancer</strong>Networks, though they are all at different stagesof implementation. There are plans to work withthe remaining <strong>Cancer</strong> Networks and this willstart during 2009. An event is being planned forSpring 2009 which will show case the benefitsthat teams have found from using the tool. Anumber of Trusts are already starting to use itto determine which services they may be ableto move to alternative settings, and as a way tosupport business cases for additional resources.Improving access to medicines for NHSpatients4.41 In June 2008 the Secretary of State forHealth invited Professor Mike Richards to leada review to examine current policy relatingto patients who choose to pay privatelyfor drugs that are not funded on the NHS.Professor Richards’ report Improving accessto medicines for NHS patients was publishedin November 2008. The 14 recommendationsmade in his report have been accepted by theSecretary of State and draft guidance on theirimplementation has been issued to the NHS.Alongside Professor Richards’ report, NICE hasproposed a new scheme for the appraisal ofdrugs licensed for use in patients with conditionswhich are uncommon and which carry a poorprognosis.4.42 These new initiatives should bring veryconsiderable benefits to cancer patients. Inparticular, access to new medicines will beimproved by:• improving the processes used by PCTs toassess new drugs and to evaluate exceptionalcircumstances. This will be taken forwardthrough the work on the NHS Constitution.


CHAPTER 4: ENSURINg BETTER TREATMENT29• ensuring appraisals undertaken by NICEare more timely. Action is already beingundertaken on this (see paragraphs 4.37-4.39above).• promoting more flexible approaches to thepricing of new drugs. This has recently beenagreed with the pharmaceutical industry aspart of the Pharmaceutical Price RegulationScheme (PPRS).• broadening the cost effectiveness criteriaused by NICE in the appraisal of drugs usednear the end of life.• investigating the extent and causes ofinternational variations in drug usage.4.43 Although these measures should improveaccess to cancer medicines very considerably,there are limits to what the NHS can reasonablybe expected to pay. However, in response to theRichards Review the government has made itclear that no patient will lose their entitlementto NHS care they would otherwise have received,simply because they opt to purchase additionaltreatment for their condition.4.44 The draft guidance from the DH setsout how this will be achieved by deliveringprivately funded care and NHS care separately.Alongside this, commitments have been madeto ensure that written information is alwaysavailable, giving patients a balanced view of thebenefits, potential toxicities and likely costs ofnew treatments. The DH will also commission atraining programme for clinicians to enhance thequality of discussion about these difficult issues.A national audit of the use of unfunded drugswill also be commissioned.Quality and safety of chemotherapyservices4.45 During the course of 2008 concerns aboutthe quality and safety of chemotherapy serviceshave been raised from three different angles.<strong>First</strong>, the National Patient Safety Agency (NPSA)issued a Rapid Response <strong>Report</strong> in January 2008relating to the risks of incorrect dosing of oralanti-cancer medicines. Second, the nationaloverview report of the cancer peer reviewprogramme (2004-2007) highlighted variationsin compliance with the chemotherapy measuresset out in the Manual for <strong>Cancer</strong> Services (2004).Third, the National Confidential Enquiry intoPatient outcome and Death (NCEPoD) publisheda report For better or worse in November 2008which reviewed the care of patients who diedwithin 30 days of receiving systemic anti-cancertherapy.4.46 Taken together these reports highlight theneed for urgent action to improve the qualityand safety of chemotherapy services. In responseto these concerns draft guidance from theNational Chemotherapy Advisory group (NCAg)was published by the DH in November 2008,alongside the NCEPoD report. This guidance isopen for consultation until 4 February 2009.4.47 The draft NCAg report ChemotherapyServices in England: Ensuring quality and safetysets out proposals for the actions that will berequired at each step in the chemotherapy carepathway:• referral, assessment and decision to treat• prescribing, verification and dispensing• delivery• information, education, support and advice• urgent assessment and management ofcomplications• knowledge and recording of toxicity• end of treatment record and subsequent careplan.4.48 The draft NCAg report draws particularattention to the need for improvements inacute services for cancer patients, includingthose receiving chemotherapy. Patients may be


30 CANCER REFoRM STRATEgyadmitted to hospital as an emergency, and insome cases to a hospital different to the onewhere chemotherapy was delivered. goodcoordination between emergency medicine,general medicine, clinical oncology, medicaloncology and haemato-oncology services isessential.4.49 Following consultation final guidance onchemotherapy services will be issued to the NHSin 2009.


31Chapter 5:Living with and beyond cancerProgress:• Advanced Communications Skills Training programme is fully developed and has been rolledout to the <strong>Cancer</strong> Networks• 11 national cancer patient information pathways have been developed• National <strong>Cancer</strong> Survivorship Initiative launched• 16 communities testing new approaches to survivorship carePriorities for the coming year:• Patient Experience Survey• Putting patients’ experience at the heart of measures of performance• Autumn 2009 – vision and plan for National <strong>Cancer</strong> Survivorship InitiativeIntroduction5.1 By the end of this year, there will bearound 1.6 million people in England alivehaving had a diagnosis of cancer. Chapter 5 ofthe <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> (CRS) was aboutimproving the experience of these people livingwith and beyond cancer. This chapter considerswhat progress has been made towards thatobjective, and looks ahead to the further workplanned.Information, communication,decision-making and choiceFace-to-face communication5.2 The CRS set out actions to improveand extend communication training for seniorhealthcare professionals.5.3 The Advanced Communications SkillsTraining programme (ACST) is fully developedand has been rolled out to the <strong>Cancer</strong> Networks.The course has been developed from a soundevidence base and uses experiential learning topromote behavioural change in the participants.The course lasts three days and includesintensive role play sessions using actors assimulated patients/carers or colleagues. The roleplay is video recorded and participants receiveconstructive feedback and a secure environmentto help them explore alternative communicationsprocesses and styles.5.4 The course is now referred to asConnected, the national communication skillstraining programme. A dedicated website forthe programme (www.connected.nhs.uk) hasbeen launched. The site will not only promotethe course to clinicians, but will also provide aninteractive workspace for facilitators and courseparticipants to develop communication skillsfurther.


32 CANCER REFoRM STRATEgy5.5 Some 275 course facilitators have beentrained in the Connected programme with 50%of those currently fully approved to deliver thecourse. The balancing 50% can deliver trainingwhile mentored by an approved facilitator. All<strong>Cancer</strong> Networks have some capacity to deliverthe national programme and approximately 150courses are planned for the current financialyear. This will deliver training to some 1500cancer practitioners.5.6 The CRS also said that we needed toensure that general and community-basedclinicians and other healthcare staff who treatand support cancer patients have access to goodcommunication skills training. Pilot programmeshave been run in a number of areas including inheart disease and children and young people’s(CyP) services. The programme is currently alsobeing reviewed as part of the End of life Care<strong>Strategy</strong> implementation plan and a number ofpilots will be undertaken in 2009.5.7 Meanwhile, the more focused workon communication with CyP is progressing.Train the Trainer programmes are scheduled forDecember 2008 and February 2009. In additionthe West Midlands Strategic Health Authority(SHA) have allocated funds to develop materialsto support delivery to CyP.5.8 New peer review measures will enablePrimary Care Trusts (PCTs) to identify that allmembers of the multi-disciplinary team (MDT)who have contact with patients are trained inadvanced communications skills.Information products, pathways andprescriptions5.9 Major progress has been made over thepast year on providing high quality information tocancer patients at each step in the care pathway.5.10 The National <strong>Cancer</strong> Action Team (NCAT),with <strong>Cancer</strong> Networks across England andover 13 cancer charities, has been working todevelop national cancer patient informationpathways to support the delivery of informationprescriptions to cancer patients. The nationalpathways along with “bite-sized” chunks ofinformation will provide the content for cancerpatient information prescriptions. To date elevennational cancer patient information pathwayshave been developed: breast, bowel, prostate,lung, womb, ovarian, cervical, vaginal, vulva,palliative care, and generic information for allcancer types.5.11 A first stage of pilot testing a prototypecancer information delivery system and tendraft national pathways took place from Mayto August with five trusts covering:• breast cancer• bowel cancer• gynaecological cancers• palliative care• generic information about cancer.5.12 The first stage pilot demonstrated that anational tool storing a wide range of informationwhich is available at the point of need, whichsupplies the patient with a permanent record ofthe information received and which is dispensedat the consultation was beneficial for both healthcare professionals and patients. The prototypesystem made a wide library of content availableto health care professionals, so that patients hada choice of information to take away with themto support treatment decisions and the effects ofliving with cancer.5.13 A second wave of early adopter sites willbegin shortly. Thirty nine trusts have appliedto take part across twelve <strong>Cancer</strong> Networks,covering all developed national pathways, for sixmonths. These pilots will be testing:• prescribing and dispensing of patientinformation by clinical nurse specialists• prescribing of patient information byconsultants• dispensing of patient informationprescriptions by information centres• prescribing of information by communitynurses


CHAPTER 5: lIVINg WITH AND BEyoND CANCER 33• self prescribing by patients.5.14 There are plans in early 2009 to look ata primary care module of the cancer patientinformation delivery tool for gPs and othercommunity staff, to help them to ensure thatpatients living with cancer have access to highquality coordinated information.5.15 Another version of the tool will beavailable, in 2009, which will allow health careprofessionals to develop bespoke informationprescriptions with patients supported byinformation from the national cancer patientinformation pathways, with additional featuressuch as emailable information to patientsand carers.5.16 In discussing the information needs ofpatients, the CRS Advisory Board highlighted thevery important role that NHS Choices does andcan play in providing the right information. Theysuggested that the <strong>Cancer</strong> Programme shouldwork more proactively with NHS Choices. Thiswill be taken forward in 2009.National <strong>Cancer</strong> SurvivorshipInitiative5.17 Chapter 5 of the CRS covered a rangeof other issues which affect people living withand beyond cancer, including the need to ensurethat patients experience good continuity ofcare, the importance of psychological supportfor cancer survivors and the role of clinicalnurse specialists. These and many other issuesare being taken forward as part of the National<strong>Cancer</strong> Survivorship Initiative (NCSI) which,following the CRS, was established to supportthe survivorship agenda.5.18 The NCSI is co-chaired by Ciaran Devane,Chief Executive of Macmillan <strong>Cancer</strong> Support,and Mike Richards, National <strong>Cancer</strong> Director,with a steering group overseeing the deliveryof the agenda. The CRS said that there wouldbe a think tank event about how to take thesurvivorship agenda forward, and the workprogramme is based on the recommendationsarising from that event, which was held inMarch 2008.5.19 Work streams have been established onthe following:• assessment, care planning and immediatepost treatment approaches to care• managing active, progressive and recurrentdisease• late effects of treatment• survivors of childhood and young peoplecancers• work and finance• self-care and self-management• research.5.20 Each work stream has also been askedto consider issues relating to information,commissioning and workforce. once the workof the individual work streams is more advanced,cross-cutting groups will be established.5.21 Sixteen test communities have beenidentified to map their current adult survivorshippathway, identify opportunities for improvementand to test the opportunities within theircommunity. For children and young people’sservices, ten test sites are being launched inJanuary 2009. NHS Improvement are overseeingand managing this process.5.22 The NCSI as well as the work streamsand test sites were officially launched on 11September 2008. The plan is for the workstreams to have reached initial conclusions intime for a vision and implementation plan tobe published in the autumn of 2009.


34 CANCER REFoRM STRATEgyBox 9: Project in Yorkshire to test feasibility and acceptability of a new supportive caremodel of follow-up for breast cancer patientsStandard practice after potentially curative surgery for breast cancer is regular hospital followupvisits. The value of this resource intensive practice is constantly being questioned. It isacknowledged that routine hospital visits cause significant stress to the patient and, moreimportantly, most symptoms attributable to local recurrence are first identified by the patient.Many clinicians believe that time spent following up essentially well women is not clinicallybeneficial or cost effective. Inevitably these routine visits lengthen waiting times for newreferrals and may compromise the efficiency of individual diagnostic services.This pilot – which started in June 2008 – involves women who have recently undergonepotentially curative surgery for breast cancer. A model of follow-up based on supportive care,which will replace routine hospital appointments, with a package of self-help in the form of a“prescribed” training course. It is provided through collaboration between the NHS and Breast<strong>Cancer</strong> Care. Telephone support and access to specialised clinics for all patients will be providedas required.The pilot study is being carried out over a two-year period. All consenting patients will attendthe course. Following this, patients will be randomised to either the trial arm with open accessbut no routine visits or the standard arm with routine follow-up in outpatients. All patients willcomplete quality of life assessments and phone interviews at regular intervals to assess theirexperiences.


CHAPTER 5: lIVINg WITH AND BEyoND CANCER35Box 10: The Service Pledge for Breast <strong>Cancer</strong>: a tool for patient involvement andservice quality improvementBreakthrough Breast <strong>Cancer</strong> has collaborated with fifteen breast units in England and Wales toproduce a local Service Pledge for Breast <strong>Cancer</strong>. At each unit, Breakthrough has worked withhealthcare professionals and patients to review the existing service and identify specific areas forimprovement. This results in the publication of a local Service Pledge for Breast <strong>Cancer</strong>, listingthe standards of care patients should expect to receive and the chosen improvement goals.goals already achieved include:• a photographic guide to surgery and reconstruction at The Royal Surrey County Hospital• a drop-in clinic run by the nurse specialists at The Friarage Hospitallonger term pledges include a new breast care unit (previously housed in a portakabin) forPilgrim Hospital.The Service Pledge is designed to enable patients to speak up about what matters most tothem. Breakthrough coordinates a patient survey at each unit and sends trained patientadvocates to carry out interviews with a number of patients that have used the unit.Each unit also recruits patient representatives to work closely with healthcare professionals onthe drafting of the local Service Pledge.A staff member, usually a breast care nurse, leads the Service Pledge team. Breakthroughsupports each Pledge site and enables and encourages the Pledge leads across the country tolearn from each other.An independent evaluation in 2008 confirmed the value of the Service Pledge approach toimproving services:• patients and healthcare professionals regard it as a distinctive and sound approach tobringing about improvements in breast services through patient involvement• patients find their local Service Pledge a useful information tool, clarifying what they shouldexpect from their unit• the Service Pledge facilitates team working and unites multi-disciplinary teams aroundcommon, patient-centred goals.Breakthrough will work with twelve more hospitals in 2008/09.


36 CANCER REFoRM STRATEgy5.23 There have been a number ofdevelopments outside of the CRS programmewhich have been supportive of the survivorshipagenda. These include:• in June 2008 the government launched anew strategy to support, help and improvethe lives of carers. The Carers <strong>Strategy</strong> isunderpinned by £255 million to implementsome immediate steps alongside medium andlonger term plans.• in July 2008, the final report of the NextStage Review was published. This report setsout a range of plans relevant to improvingcare and support for survivors, such asimproved information for patients andpersonal care plans for all those with longtermconditions.• in october 2008, the government announcedthat all prescriptions for patients with cancerwill be charge-exempt from April 2009 –this will be beneficial for those patientsfor whom payment of charges has beena financial pressure.Measuring patients’ experience5.25 The CRS said that there would be anew NHS <strong>Cancer</strong> Patient Experience SurveyProgramme.5.26 This Survey Programme will build onexperience from the large-scale cancer patientexperience surveys carried out in 2000 and 2004.A <strong>Cancer</strong> Patient Experience Survey ProgrammeAdvisory group is taking forward importantpreparatory work for the survey programmeto begin in 2009/10. This includes:• considering key principles for theunderpinning of the survey programme• working with clinicians to learn how to getbetter engagement with the survey at alocal level and use results to drive serviceimprovement locally• learning lessons from existing local surveys(eg see box 11 from Sussex <strong>Cancer</strong> Network),other DH patient surveys and the cancerpatient experience surveys from 2000and 2004.5.24 While the CRS Advisory Board wasgenerally pleased with progress on thesurvivorship agenda, they highlighted that a toppriority needed to be achieving coordinated,integrated care for cancer patients. This aspectof the work will receive a particular focusin the year ahead. The Advisory Board alsosuggested that the <strong>Cancer</strong> Programme neededto ensure that cancer patients benefited fromthe expansion and development of psychologicaltherapies, and this is something that will beconsidered further in the year ahead.


CHAPTER 5: lIVINg WITH AND BEyoND CANCER37Box 11: Sussex <strong>Cancer</strong> Network (SCN) Patient Experience Surveys 2008The SCN Partnership group has developed four surveys building on the National Patient Survey(1997) to enable multidisciplinary teams (MDTs) and tumour groups to receive feedback frompatients about their experience. As a result of the reports, the MDTs identify any changes whichneed to be made and are implementing those changes. The results are discussed in each of thetumour group to enable sharing of best practice. The surveys carried out in 2007/08 reviewedthe experience of patients from gP referral to diagnosis.To date 352 urology, haematology, head and neck, colorectal and breast patients haveresponded to the survey. overall, the feedback from patients has been overwhelmingly positiveand has been a great endorsement of the multi-disciplinary collaboration in the MDTs.These endorsements included:• over 80% of patients receiving sufficient information about their investigations, diagnosis,treatment options and treatment• over 94% of patients feeling they had been listened to, treated in a friendly and courteousmanner, enabled to discuss any fears and worries and told their diagnosis in a sensitive wayby the MDT doctors and nurses• over 92% of patients stated that overall the quality of the care they received was good.There were some consistent shortfalls in the standards expected, such as:• between 37% and 51% of patients referred under the 2-week wait system stated that theirgP had not warned them that they were being referred to rule out or confirm a possiblecancer diagnosis• lack of generic information such as finances, diet, complementary therapies, psychologicalsupport, body image, support groups and family history risks• less than half of patients being offered a “permanent record of significant consultations”or being advised to bring someone with them when they were told their diagnosis.


38 CANCER REFoRM STRATEgyBox 12: North London <strong>Cancer</strong> Network – Picker Survey of cancer patients’ experiencesAs part of the peer review process, each multidisciplinary team (MDT) is required to undertakean annual survey of patients’ experience. To date these surveys have been locally developedoften with poor analysis and limited impact on service improvement. National peer review datashows that although 62% of MDTs had undertaken a survey, 42% had presented and discussedresults and only 35% had acted on the results.In response to this, the North london <strong>Cancer</strong> Network has worked with local patients, clinicians,managers and commissioners to develop a network approach to surveying the experience ofcare of cancer patients. The benefit of conducting a network wide survey has meant that thenetwork will be able to:• provide a systematic approach to assessing the patient experience that allows us tobenchmark our MDTs• understand the experience of care across the patient pathway and identify areas of goodand poor experience• provide reports at a Trust and Network level• provide reports to PCT commissioners on local providers.The Network has worked with the Picker Institute to develop, distribute, analyse and providereports back to Trusts and commissioners so that there is robust data to input into Trusts’ qualityand patient experience strategies. The first reports are due in March 2009.5.27 In assessing progress in implementingthe CRS, Advisory Board members said thatthey considered that one of the top prioritiesfor the future is to develop a culture wherethere is more of a focus on outcome measuresrather than process measures, and where patientexperience is seen as a key outcome measure.Progress on the patient experience survey will beone of the top priorities for next year.backed by new funding (£286 million over twoyears).5.29 Progress on implementation of the Endof Life Care <strong>Strategy</strong> will be monitored by anexternal advisory group and an annual reportto Ministers on progress will be published.End of Life Care <strong>Strategy</strong>5.28 End of life care is not covered in any detailin this report, as progress will be monitoredelsewhere. In July 2008, the DH publishedthe first ever comprehensive End of Life Care<strong>Strategy</strong> for this country. This covers end of lifecare for all conditions and in all settings, butwill of course benefit cancer patients. The aimis to bring about a step change in the quality ofservices and to enhance choices relating to carefor people approaching the end of life. Particularemphasis is being put on improving communityservices and coordination of care. The <strong>Strategy</strong> is


39Chapter 6:Reducing cancer inequalitiesProgress:• Further reduction in inequality gap in mortality rate• June 2008 – launch of Health Inequalities: progress and next steps• Development of the National <strong>Cancer</strong> Equality InitiativePriorities for the coming year:• Ensuring that the cancer programme is fully integrated into broader work on tackling inequalities• Dissemination of good practice in relation to tackling inequalities in cancer care and outcomes• Embedding action on health inequalities throughout all strands of the <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> implementation• Publication of incidence and mortality figures by ethnicity, to provide evidence base for future action• National BME <strong>Cancer</strong> Patient Advisory Panel establishedIntroduction6.1 The <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> (CRS)contained a number of actions to help reduceinequalities, and this chapter reports on progressand plans for the future.gap in mortality has reduced to 18%. Thechallenge for the future is to decrease it further.Mortality6.2 The latest mortality figures (see below)demonstrate a further reduction in the inequalitygap for cancer mortality for people under theage of 75. This graph shows that in the baselineyears (1995/97) cancer mortality was 20.7%higher in Spearhead (deprived) Primary CareTrusts (PCTs) than in England as a whole. overthe past decade, mortality has falled both inSpearhead and other PCTs, but the inequality


40 CANCER REFoRM STRATEgy<strong>Cancer</strong> mortality in people under age 75 – Inequality gapEngland 1993-2007 and target for the year ‘2010’Age standardised mortality rateProgress since baseline:Per 1000,000 population180A fall of 13.2% in the gapSpearhead170Target:Group1606%minimum15014020.7reductionin absolutegap, fromEngland1995-97130 baseline120110018.0rate19.51993/94/951994/95/961995/96/971996/97/981997/98/991998/99/20001999/2000/012000/01/022001/02/032002/03/042003/04/053 year average2009/10/112004/05/062005/06/072006/07/082007/08/092008/09/10baseline Progress targetProjection of cancer mortality for England (exponentialprojection based on data for the 10 years 1998-2007)Target reduction for Spearhead Group i.e. to achievetarget reduction in gap given observed/projectedEngland rateSource: ONS (ICD9 140-209; ICD10 C00-C97)Actual DataInequality Gap in rate*(deaths per 100,000 population)*The absolute gap between rate for Englandand rate for Spearhead Group (in deathsper 100,000 population)TargetHealth inequalities: progress andnext steps6.3 In June of this year, the governmentlaunched a document outlining its plans toincrease action on the 2010 health inequalitiesPublic Service Agreement (PSA) targets, assessingwhat has worked and setting the directionof travel beyond 2010. This document setsout how the government will tackle healthinequalities by promoting health and wellbeing,by strengthening efforts to tackle the widerdeterminants of inequality and by making surethat everyone can access the services they needin a way that is convenient to them and bypromoting direct support and tools for deliveryorganisations. Much of this action will be verysignificant in tackling inequalities in canceroutcomes, but this chapter focuses particularlyon the work flowing from the CRS.National <strong>Cancer</strong> Equality Initiative6.4 A National <strong>Cancer</strong> Equality Initiative (NCEI)Advisory group is taking forward a series ofactions to reduce inequalities in cancer care. TheNCEI is co-chaired by Joanne Rule, a member ofthe CRS Advisory Board, and Mike Richards, theNational <strong>Cancer</strong> Director. The actions include:• a survey of <strong>Cancer</strong> Networks and communitygroups to identify good practice in reducinginequalities in cancer care. The aim is produceadvice to the service on best practice inSpring 2009.• charging the other major CRS initiativeswith embedding equality and action oninequalities into their workstreams. The NCEIhas already sent detailed ideas on reducinginequalities to the National Awareness andEarly Diagnosis Initiative (NAEDI) and National<strong>Cancer</strong> Intelligence Network (NCIN) and planto communicate similar ideas to other CRSinitiatives (eg survivorship, patient experiencesurvey, research).• recognising that individuals may fall intomore than one equality strand, developinga human rights programme, Know YourRights, in partnership with Macmillan <strong>Cancer</strong>Support and the Department of Health (DH)Equality and Human Rights group.6.5 <strong>Cancer</strong> has also been identified as apriority in the second wave of the DH Pacesettersprogramme. Pacesetters is a partnershipbetween local communities with significanthealth inequalities, the NHS and the DH. Theoverall aim of the programme is to deliverequality and diversity improvements andinnovations.


CHAPTER 6: REDUCINg CANCER INEQUAlITIES41Box 13: Wave 1 of the Pacesetters Programme: breast cancer screening and peoplewith learning disabilities in WalsallWalsall Integrated learning Disability Service (IlDS) realised that they had some significant workto do to improve the uptake of breast screening by women with a learning disability. The keyaim of the project was to provide improved access and uptake to breast screening services inWalsall for women with a learning disability.A collaborative approach was taken between key partners – The Health Facilitation Team andcommunity nurses from Walsall IlDS and radiographers from the breast screening unit at WalsallManor Hospital NHS Trust.Engagement took place between female service users through the user group, “Making ourChoice”, to find out what the barriers were to accessing screening services. Simple, practicalsteps rather than complex interventions were identified that users felt could make a realdifference. These included:• awareness training for breast screening staff• “easy read” invitation letters and information material• health promotion groups• pre-familiarisation visits to help users overcome fear of the unknown• collaborative clinics facilitated by community learning disability nurses to support users andscreening staff.Both qualitative and quantitative data were collected as part of the evaluation of the project.So what was the outcome? In 1997, 62 women with a learning disability were eligible for breastscreening but only 19 (31%) were screened. Following the project, in 2007-08 the uptake forscreening by women with a learning disability, able or wanting to be screened increased to100% (54 successful screenings undertaken).The challenge now is to embed the lessons learned, maintain the improvement and share thelearning with other learning disability Trusts in the NHS.6.6 As part of Pacesetters Wave 2, thefollowing cancer issues have been identified tohelp reduce inequalities:• breast screening in the over 70s• breast screening in BME women• cervical screening for lesbians• screening for trans-men and trans-women• palliative care for cancer patients from faithgroups.Local action6.7 <strong>Cancer</strong> Networks, with PCTs, arereviewing the percentage change in mortalityrates since 1997, in order to assess theircontribution to achieving the 2010 PSA targets:to reduce cancer mortality and health inequalitiesin cancer and to improve life expectancy.Understanding progress and variations between<strong>Cancer</strong> Networks and PCTs will underpin howthey, with PCTs, agree challenging goals forreducing cancer mortality in every Network areaby 2012.


42 CANCER REFoRM STRATEgy6.8 An example of action is set out in box 14below:Box 14: Inequalities in early detection and prevention: experience in <strong>Merseyside</strong> and CheshireContext:Inequalities exist in cancer incidence, survival and mortality• incidence of common cancers such as lung cancer, vary more than twofold with social andeconomic advantage• survival for common cancers such as bowel cancer is worse in poorer areas• death rates from cancer are much higher in cities in the North WestAnd in how much different people take advantage of cancer screening• for example, people with mental health problems or learning disabilities are less likely to beinvited, and need more support, to participate in cancer screening.one <strong>Cancer</strong> Network in England invested in a Health Inequalities Manager in 2005, andengaged with Directors of Public Health to commission strategic public health leadership in the<strong>Cancer</strong> Network team.These individuals worked together to propose and deliver a strategy to reduce inequalities in cancer incidence and survival. The strategy was designed by the Network’s stakeholders including patients, clinicians and managers.The strategy prioritised six cancers where inequalities are significant. These were breast, lung,bladder, cervix, bowel cancer and malignant melanoma.Five themes were chosen. These were screening, healthy schools, social marketing, symptomawareness and risk, and staging.The strategy is being delivered through numerous organisations and people. local NHSorganisations have signed up at the highest level to support the strategy. We have a two yearaction plan which is being delivered by task and finish groups.For example, PCT screening leads have agreed to tackle inequalities in performance betweendifferent general practices, and to target the never screened, because they are most likely tobenefit.The Network is committed to continuing wide stakeholder involvement. It has decided to manageperformance through annual stakeholder reviews, the first of which occurred in october 2008.Existing programmes and local initiatives have been extended across the Network area, andsome important new ideas have been tested and implemented.For example, the Network has developed and shared a DVD about bowel screening in severallanguages including British Sign language. The Network has commissioned a social marketingteam to develop a cancer specific approach that will influence lifestyle behaviours and choices.


CHAPTER 6: REDUCINg CANCER INEQUAlITIES43Ethnicity6.9 The eight <strong>Cancer</strong> Registries in Englandhave worked with the National <strong>Cancer</strong>Services Analysis Team and the Public Healthobservatories to examine, evaluate and exploitthe use of patient-level coded ethnicity data,which is held in the Hospital Episodes Statistics(HES) data held by the NHS Information Centre.6.10 The National <strong>Cancer</strong> Intelligence Network(NCIN) funded the development work toundertake national-level data linkage, to linkcancer registry and HES data for the latest tenyears of data (up to 2005). The resulting workhas been fed back to all the eight regional<strong>Cancer</strong> Registries, which are uploading theethnicity data into their data systems.6.11 Through the NCIN, routine access toall prospectively recorded ethnicity data will beavailable to all eight <strong>Cancer</strong> Registries, to ensurethat where ethnicity data is recorded in hospitals,this data is electronically routed to the registries,through the HES dataset.6.12 The Thames <strong>Cancer</strong> Registry has doneseveral studies of cancer incidence, care andoutcomes in relation to ethnicity and reportsfrom the studies are due to be published in2009. The studies focus particularly on breastand prostate cancer and will help to show theincidence and survival rates in different BMEgroups, mainly Black and Asian people. Ingeneral terms, the studies show that in SouthEast England:• Asian and black women have a lowerincidence of breast cancer than white women• young women have more similar rates thanolder women (suggesting a migration effectwith convergence towards the local rate)• black women have significantly worse survivalthan white women (this is attributable todeprivation and stage differences)• prostate cancer incidence is generallyconsistent with international patterns ofvariation• black men have rates twice those in whitemen while Asian men have lower rates• survival is similar in white and black men, andAsian men have higher survival.6.13 The National <strong>Cancer</strong> Action Team (NCAT)working with <strong>Cancer</strong> Black Care and other BMEcancer charities are developing a National BME<strong>Cancer</strong> Patient Advisory Panel. The panel willprovide BME cancer patients and their carerswith an opportunity to voice their experiencesof cancer services across England in a facilitativeway. It will also provide a space for feedbackfrom BME patients and carers, to be used byservice providers to improve the way services areprovided and developed for diverse groups ofcancer patients and carers.6.14 The Panel builds on a BME cancer charitiesmeeting held in January 2008 and addressesthe under-representation of BME patients andcarers in traditional methods and modes ofengagement with the NHS. It will provide anational voice to this group of patients andprovide a much needed vehicle for the NHS toengage with diverse groups of cancer patientsand carers.Clinical trials6.15 In line with a commitment in the CRSto encourage recruitment of older peopleinto clinical trials, a joint project between theNational <strong>Cancer</strong> Research Network, the Northernand yorkshire <strong>Cancer</strong> Registry and the NCINhas started to pilot the linkage of clinical trialsdata with <strong>Cancer</strong> Registry data. This will allowthe monitoring of entry rates into clinical trials(both randomised and observational) to comparethe demographics and tumour characteristicsagainst underlying population based incidence.This work will examine geographic, age, ethnicand socio-economic characteristics of patients intrials, comparing characteristics of trial entrantswith those of non-entrants.


44 CANCER REFoRM STRATEgy6.16 The project will additionally:• produce an evaluation of the potentialfor following up patients who have beenin clinical trials over long periods• assess the quality, reliability andreproducibility of data available in theNHS datasets against the data collectedin clinical trials.


45Chapter 7:Delivering care in the most appropriate settingProgress:• Establishment of NHS Improvement project to transform inpatient care for cancer patientsPriorities for the coming year:• Significant improvements in inpatient care• Improving MDT workingIntroduction7.1 New models of care can bring significantadvantages to patients and release resourcesfor other developments. The <strong>Cancer</strong> <strong>Reform</strong><strong>Strategy</strong> (CRS) set out a number of actions todeliver care in the most appropriate setting, andthis chapter reports on progress.Inpatient care7.2 The CRS identified that:• little attention had been given to cancerinpatient care to date• England had higher bed utilisation for cancerthan other countries and that this accountedfor a large proportion of total cancerexpenditure• over 14,000 cancer patients were in hospitalat any one time• this equated to around 29 occupied beds per100,000 population and around 435 for aNetwork with a population of 1.5 million• 60% of these beds were occupied by patientsadmitted non-electively• inpatient care for cancer patients accountedfor 12% of all inpatient bed days• most people diagnosed or suspected tohave cancer had at least one admission intohospital.7.3 Previous testing work carried out by NHSImprovement and the National <strong>Cancer</strong> ActionTeam (NCAT) identified opportunities to improvethe quality of the inpatient experience andimprove the efficiency and effectiveness of theelective and emergency inpatient pathway. Thelearning from this early work led to a nationalprogramme being established with a specificfocus on transforming inpatient cancer care.7.4 The Transforming Inpatient Careprogramme covers six major work streams:• patient experience – to commence with abaseline assessment• new models of care• commissioning• research and evaluation


46 CANCER REFoRM STRATEgy• new clinical approaches• information/data performance including theimpact of service improvement.7.5 The programme is supported by NHSImprovement and the NCAT, working withusers, charities, professional bodies and partnersin health and social care. It was launched inoctober 2008.7.6 The new models of care work stream aimsto focus on testing new ideas to reduce lengthof stay, avert emergency admissions, deliver carein the most appropriate setting and developmodels of care delivery that improve quality andvalue the patient’s time.7.7 To date the work stream involves:• 34 organisations• covering over 58 geographical sites• 22 sites testing new ideas• 15 sites spreading the winning principles(see box 15)• 26 sites testing sustainability of testedimprovements• further specific pilots focused onhaematology & oncology.Box 15: The NHS Improvement four winning principles1. Unscheduled (emergency patients) should be assessed prior to the decision to admit. Emergency admission should be the exception not the norm.2. Patients should be on defined inpatient pathways based on their tumour type and reasons foradmission.3. Clinical decisions should be made on a daily basis to promote proactive case management.4. Patient and carers need to know about their condition and symptoms to encourage selfmanagementand to know who to contact when needed.


CHAPTER 7: DElIVERINg CARE IN THE MoST APPRoPRIATE SETTINg477.8 Examples of the type of changes that have been achieved are set out in box 16 below:Box 16: Improving inpatient care examplesWinning Principle 1. Sherwood Forest Hospital NHS Foundation TrustThe Trust reduced the average length of stay by 25% for lung cancer patients by developing andtesting a Recurring Admission Patient Alert System (RAPA) and identified the potential to release560 bed days per annum. The success of this approach has now been implemented across thewhole hospital and won the 2007 Medical Innovation Futures Award.“RAPA is a simple communication solution that ensures that everyone knows their patient isthere. It has worked successfully in cancer and now the idea is used across other specialties.”Winning Principle 2. Sandwell & West Birmingham Hospital NHS TrustThe Trust reduced the average length of stay for breast cancer patients undergoing electivesurgery (including mastectomy patients) from 6.6 days to 23 hours. Approximately 300 patientsa year will benefit. All breast cancer patients are now treated in the treatment centre. Changesin clinical practice have supported this development with robust pre-operative screening andwound drains are no longer inserted. Current medical audit of this approach has shown areduction in hospital acquired infection and patients’ satisfaction with this new model of carehas been very positive.“The 23 hour stay was universally popular with patients from all backgrounds.”Winning Principle 3. Improving bed utilisation of oncology beds – Brighton and SussexUniversity Hospitals NHS Trust and the Sussex <strong>Cancer</strong> NetworkThe second half of 2007 and early 2008 saw the team at Brighton and Sussex UniversityHospital participating in the national <strong>Cancer</strong> Collaborative “Inpatient Experience” work streamto identify what makes a difference to the cancer inpatient experience. As one of the nationalpilot sites the team, supported by a service improvement facilitator from the Sussex <strong>Cancer</strong>Network, set out to test the following principle: could “timely decision making” improve accessand reduce length of stay? The focus was oncology inpatients in Howard 1 ward.Baseline – there were two areas identified where it was felt improvements could be made.one related to “access”, where only half of elective patients were normally admitted on theiroriginal planned date (“clinical priority” patients were among those deferred). The other relatedto patient discharge, where about a third of elective patients stayed beyond their planneddischarge date. The average overstay was around half a day. The baseline measure for averagestay was 2.92 bed days per patient.Changes – with support from the oncologists, several changes were implemented, which havenow become normal working practice:“Admission Priorities criteria” were produced, with a reference chart to automate the decisionmakingprocess, ensure admission based upon clinical priority, to help forecast and managepatient flow and help take emotion out of the decision making.Benchmark length of stay periods by treatment were established and processes introduced touse the benchmarks for improved discharge management. This involved the setting up of aweekly inpatient review meeting involving oncologists, including the patients’ planned dischargedate on shift handover sheets, daily “paper” ward round attended by the ward team, and anescalation procedure if discharge overstay is likely.


48 CANCER REFoRM STRATEgyOutcome – the changes produced significant improvements in both areas of access anddischarge and an informal review in February 2008 (post-pilot) indicated an encouraging level ofsustainability.The number of all elective patients normally admitted on their original planned date rosefrom 58% to 81%. The priority patients went from 64% to 93%. For the patients that weredeferred, the average wait reduced from 3 days to 1 day.The proportion of patients exceeding their planned discharge date reduced from 29% to 5%.The average overstay reduced from half a day to virtually zero and the average stay was 2.4 beddays per patient.Recognition – the team’s achievement was recognised by winning the South East Coast StrategicHealth Authority Health & Social Care Regional Award 2008 for the Improving Inpatient Carecategory. The success can be put down to excellent examples of leadership, commitment andenthusiastic support from all involved.


CHAPTER 7: DElIVERINg CARE IN THE MoST APPRoPRIATE SETTINg49Winning Principle 4 – Blackpool, Fylde & Wyre Hospitals NHS Foundation TrustTested multiple approaches involving patients and clinicians to reduce mortality and length ofstay through developing an emergency pathway for the management of emergency patientswith neutropenic sepsis. This work included development of a DVD about neutropenic sepsisfeaturing patients.Winner of the 2007 Blackpool Fylde & Wyre Innovation AwardThe approach to improving the emergency pathway for patients with Neutropenic Sepsis is underpinned by an agreed Neutropenic Sepsis Management Policy, listening and using the views of our patients.This DVD is a good idea verbal information and leaflets don’t really sink in because it is sucha difficult time. you can’t take it all in it is a bit too much, but I think the DVD will stick inpeople’s minds. Husband of a patientThanks for the DVD which I found very powerful. Every patient on chemo should have a copy. Diana’s statement that “I didn’t want to be any trouble, because they are so busy” rang very true to me and it could have been my late wife speaking. Husband of a patientI do think it is important that it is patients that feature on the DVD. I thought I knew betterand didn’t follow all the written advice but that’s what patients need to do. PatientThe patients’ stories in the DVD are very powerful and make much more impact on otherpatients and carers understanding of the importance of presenting early. lead cancer nurse


50 CANCER REFoRM STRATEgyBox 17: Andy’s reflectionsMy name is Andy Millward. I am a 55 year old man who was diagnosed in october 2004with metastatic prostate cancer, a form of cancer that was so advanced that I was only giveneighteen months to two years to live. I am very fortunate in that I have thus far been able todefeat that timetable and prognosis, but the majority of my subsequent treatment has beensuccessfully managed whilst at home, which is very much where I, along with many others onsimilar cancer journeys, wish to be. I have had two hospital admissions since then, both via theemergency pathways at my local hospitals and both admissions related primarily to severe pain.The process of accessing in-patient care was both difficult and traumatic for both my wife and Iand unnecessarily burdensome, as we had to negotiate very different processes and locations toeventually arrive at the oncology ward that could attend to my specific difficulties.I cannot fault the level of care offered as an inpatient (and in line with many of the audits thatI know have been carried out, some of my time was spent unnecessarily on general medicinewards). However, whilst recognizing that staff who have responsibility for us have seriousconsiderations of risk and clinical governance to consider, I think we as patients could be givenmore responsibility and innovative resources to manage more at home. From experience, I doalso believe that I could very easily have been discharged sooner, thereby shortening my lengthof stay. This is the real challenge for all of us and I therefore warmly welcome the launch ofthe national strategy on in-patient care and potential likely alternatives to managing cancerjourneys like my own away from hospital. We also need to ensure that even if acute admissionis absolutely necessary – and not just a default position of the system – that treatment and carein hospital is kept to an absolute minimum.7.9 It is important to emphasise that thepatient’s needs and wishes are at the centre ofthe improvements to the work on delivering carein the most appropriate setting. Box 17 sets outone cancer patient’s view about his experienceswith inpatient care.Multidisciplinary team working7.10 The CRS noted that, whilemultidisciplinary teams (MDTs) were now wellestablished as the core model for cancer servicedelivery, more needed to be done to ensurethat they were working effectively. The NCAT isleading a new project to determine “what makesa good MDT”. The aim of this project is to:• identify domains/themes that are essential fora good/high performing MDT• agree how best to measure an MDT againsteach domain/theme• provide support/tools to help MDTs to reachand maintain a high level of performance ineach domain/theme.7.11 The project is starting by seeking viewsfrom stakeholders (including all cancer MDTs)about what makes a good MDT and the supportneeded to achieve this. A company has beencommissioned to run the questionnaire process,which should begin shortly and report early in2009.7.12 It is intended to hold workshops in theSpring of 2009 to discuss the outcome of thisexercise and identify potential next steps. Aprogramme of action for 2009/10 will then beagreed.7.13 In addition the Manual for <strong>Cancer</strong> Servicesincludes a series of measures relating to MDTstructures and processes which Networks areassessed against as part of the national cancerpeer review programme (see chapter 9).Integration of satellite centres7.14 The CRS said – with the increasingdevelopment of service models to provide careoutside of hospital settings – commissionersshould ensure that any satellite services


CHAPTER 7: DElIVERINg CARE IN THE MoST APPRoPRIATE SETTINg51should be fully integrated with other serviceswithin the <strong>Cancer</strong> Network. To support suchintegration, the NCAT have developed a toolthat consists of a Commissioning Framework,Service Specification and Patient Pathway. Inaddition, a further tool is being developed whichwill support Networks and commissioners inanalysing the requirements to meet their currentand future population needs. Taken together, thetools will ensure that services developed within aNetwork are planned and appropriate.Other issues7.15 In discussing progress in terms ofdelivering care in the most appropriate setting,Advisory Board members raised a number ofimportant issues:• as highlighted above, most cancer patientsare keen to spend as little time as possiblein hospital, and so delivering on this agendais very much part of improving the patientexperience• primary care engagement is central toavoiding unnecessary admissions• the linkages between this programme ofwork and the rest of the CRS programme,particularly in terms of early diagnosis andthe survivorship agenda• the role of local authorities in enablingpeople to leave hospital as quickly as possible• the need for care trackers to help peoplenavigate their way through complex caresystems• the links between delivering care in the mostappropriate setting and much of the NextStage Review agenda.7.16 The national cancer programme will takeaccount of each of these points over the comingyear.


52 CANCER REFoRM STRATEgyChapter 8:Information to improve quality and choiceProgress:• The National <strong>Cancer</strong> Intelligence Network has been establishedPriorities for the coming year:• Maximising the potential of the National <strong>Cancer</strong> Intelligence NetworkIntroduction8.1 Better information on cancer servicesand outcomes enhances patient choice, drivesup service quality and underpins strongercommissioning. Improved data collection,analysis and feedback was identified as oneof the key drivers for implementation of the<strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> (CRS). To achieve this,the CRS set out a range of actions to improveinformation, and this chapter reports onprogress.Establishment of the National<strong>Cancer</strong> Intelligence Network8.2 To underpin the information requirementsset out in the CRS, the National <strong>Cancer</strong>Intelligence Network (NCIN) was launched inJune 2008 at a conference in london attendedby over 450 people from the NHS, charities,patients, carers and other stakeholders.8.3 The core objectives of the NCIN are:• promoting efficient and effective datacollection throughout the cancer journey• providing a common national repository forcancer datasets• producing expert analyses, based on robustmethodologies, to monitor patterns of cancercare• exploiting information to drive improvementsin standards of cancer care and clinicaloutcomes• enabling use of cancer information tosupport audit and research programmes.8.4 Although the NCIN is funded by theDepartment of Health (DH), it is managed as partof the wider National <strong>Cancer</strong> Research Institute.This maximises opportunities for research oncancer services and enables NCIN to contributeto UK-wide projects. A lead clinician has beenappointed, to drive the work of the NCINforward with clinical and professional groups,with a Scientific Advisory group to oversee andensure the scientific merit of NCIN outputs.8.5 While NCIN will have its ownorganisational identity and infrastructure, manyNCIN outputs will be a product of collaborationswith partner organisations for example, withthe National <strong>Cancer</strong> Action Team (NCAT), NHSImprovement, individual <strong>Cancer</strong> Registries,the United Kingdom Association of <strong>Cancer</strong>Registries, <strong>Cancer</strong> Research UK, the office forNational Statistics as well as academic groups


CHAPTER 8: INFoRMATIoN To IMPRoVE QUAlITy AND CHoICE53(eg the <strong>Cancer</strong> Research UK <strong>Cancer</strong> Survivalgroup at the london School of Hygiene andTropical Medicine).National repository8.6 Working with the <strong>Cancer</strong> Registries, theNCIN has developed a new national repositoryof cancer data, which for the first time haslinked data on incidence (routinely available fromcancer registries) with activity (data collectedby NHS Trusts and available through HospitalEpisode Statistics). A series of workshopshave explored the potential of this combineddata, which covers the most recent 10 yearsof available data. <strong>Cancer</strong> Registries and NCINpartners will develop work plans to produce keynational and local analyses in specific tumourand cross-cutting areas.National <strong>Cancer</strong> e-Atlas launched8.7 In July 2008 the NCIN launched theonline National <strong>Cancer</strong> e-Atlas, a collaborationbetween NCIN, the cancer registries and thepublic health observatories. Available free onthe internet, the e-Atlas provides quick andeasy access to cancer statistics, using a simplepoint and click approach. We have already seensignificant use of the tool and have receivedinterest from outside the UK in extending thisinto international data. (www.ncin.org.uk/eatlas)National <strong>Cancer</strong> InformationService8.8 The <strong>Cancer</strong> Registries have developed anew National <strong>Cancer</strong> Information Service, aimedat NHS clinicians and clinical teams. This NHSonly(because of patient confidentiality issues)online system makes available cancer incidence,mortality and survival information for Englandand by Strategic Health Authority (SHA), PrimaryCare Trust (PCT) and <strong>Cancer</strong> Network, coveringall major tumour types, with trend data from1985.Publication of incidence andmortality rates by <strong>Cancer</strong> Network8.9 In 2008 the NCIN produced its first reporton incidence and mortality for the major types ofcancer (together with all malignancies combinedfor all age groups, children and teenagers andyoung adults). This included information fromall four nations within the United Kingdom,analysing 2005 cancer incidence and mortalityrates for the 30 <strong>Cancer</strong> Networks in Englandwith comparable information from the seven<strong>Cancer</strong> Networks in Scotland, Wales andNorthern Ireland.<strong>Cancer</strong> Commissioning Toolkit8.10 An electronic toolkit, bringing togetherinformation on cancer in an accessible andusable way to enable the benchmarking ofservices and to inform commissioning, has beendeveloped. For more information, see chapter 9.Publication of one-year survival by<strong>Cancer</strong> Networks8.11 The NCIN has published analyses of thetrends in one-year survival rates for differentcancers, for all the <strong>Cancer</strong> Networks in England.one-year survival has always been thought ofas a proxy indicator for early/late diagnosis. Asthe collection of reliable pre-treatment stagingdata becomes a reality more sensitive clinicaloutcomes analyses will be feasible.Understanding cancer prevalence8.12 Having already published new nationalanalyses of cancer incidence and mortality for2005 by <strong>Cancer</strong> Network, the NCIN, workingwith Macmillan <strong>Cancer</strong> Support and the Thames<strong>Cancer</strong> Registry, have published new analyseswhich describe the overall prevalence of cancerin the UK. The understanding of the numberof those living with cancer is essential for theplanning of cancer and support services, andfurther work is under way with Macmillanand the Thames Registry to extend this workto provide additional detail and projections offuture numbers.


54 CANCER REFoRM STRATEgyBurden of disease from four major cancersProportion of total incidence, mortality and prevalence contributedto by each of the four major cancers in England, 2004302520Percent151050Colorectal(ICD-10 C18-C21Lung(ICD-10 C33-C34)Prostate(ICD-10 C61)Breast(ICD-10 C50) Incidence Mortality PrevalenceNote: Incidence and mortality figures obtained from theNational <strong>Cancer</strong> Information ServiceSupporting effective datacollection8.13 one of the key commitments in the CRSwas that datasets (eg for staging, radiotherapyand chemotherapy) should be defined andthat collection of these datasets should bemandated. An ongoing work programme hasbeen established with the eight English <strong>Cancer</strong>Registries and 30 <strong>Cancer</strong> Networks to implementthis, in collaboration with all multidisciplinaryteams (MDTs). During 2008, all organisationsare reviewing the overall data requirements,examining where these data exist within hospitalsystems and the most appropriate way to collect,collate, utilise and export these (this will bedone with the involvement of the InformationStandards Board for Health and Social Care).8.14 All Trusts and <strong>Cancer</strong> Registries areworking towards the provision of dataelectronically, with appropriate key data itemsprovided electronically by 2009. As all eightRegistries and the provider Trusts within the 30Networks are at different stages with regard toelectronic data capture and transfer, this will bea phased but focused approach.8.15 To ensure that the required cancer dataare not perceived as separate from other NHSdata requirements, the data will be incorporatedwhere feasible within standard commissioningdatasets and flows for payment by results (PbR).This definitional work is being undertaken incollaboration with the NHS Information Centreand Connecting for Health.8.16 The radiotherapy dataset will begin tobe collected from April 2009 (see chapter 4).To ensure the data is able to “flow” in linewith other NHS activity, the radiotherapy datahas been incorporated within the outpatientCommissioning Dataset which feeds PbR.8.17 Work is underway with a group ofclinicians to agree a dataset for chemotherapy.The contents of the National <strong>Cancer</strong> Datasethave been benchmarked against the two mainproviders of e-prescribing systems. It is plannedthat a draft dataset is produced before theend of 2008/09 which will be shared with theNational Chemotherapy Advisory group beforegoing out for consultation.


CHAPTER 8: INFoRMATIoN To IMPRoVE QUAlITy AND CHoICE558.18 once the dataset has been approved byclinical teams, consultation will then take placeduring the first half of 2009, with the aim ofimplementation in 2010.Supporting MDTs in improvingdata collection8.19 The NCAT and the NCIN have held aseries of events to discuss the provision of keydata collected at the MDT meeting to cancerregistries, clinical audits and for cancer waits.All <strong>Cancer</strong> Networks and cancer registries areinvolved in this work. The NCIN will continueto coordinate this programme with six monthlyreviews in each region.8.20 In addition, the NCAT and the NCIN aresupporting the national MDT CoordinatorsTaskforce to understand the optimal mechanismsby which data can be recorded as part of MDTworking and made available in an efficientmanner. Working closely with the going Furtheron <strong>Cancer</strong> Waits work stream, work is underwayto utilise existing national data flows to “carry”this key data from MDTs, and to make thisavailable for audit and analysis, by local clinicalnetworks and, through the <strong>Cancer</strong> Registries, bythe NCIN.8.21 NCIN clinical reference groups are beingestablished for each tumour group. Their remitwill include the review of all potential dataitems to ensure any additional data collection iskept to an essential minimum and to eliminateduplication of existing data collection processes.• ethnicity cancer statistics (<strong>Cancer</strong> ResearchUK, NCIN, Thames <strong>Cancer</strong> Registry andNorthern and yorkshire <strong>Cancer</strong> Registry andInformation Service)• teenage and young adult cancer statistics(<strong>Cancer</strong> Research UK and the North West<strong>Cancer</strong> Information Service)• statistics for rarer cancers (<strong>Cancer</strong> ResearchUK and Rarer <strong>Cancer</strong>s Forum).Making Information available8.23 All the information that has beenproduced by NCIN is available through NCINand partner organisations.8.24 The NCIN will continue to work withits partners to ensure that analyses which areproduced will be accessible through a widerange of media, including printed output andthe web. A dedicated press office is in placeto ensure all enquiries are handled quicklyand effectively, and to ensure the work ofthe NCIN is made available to the widestaudience possible.<strong>First</strong> year progress8.25 While there is much more work to bedone, the CRS Advisory Board noted in particularthe very important work being carried out by theNCIN in its first year and looked forward to itsfuture work.Planned analyses from the NCIN8.22 The NCIN is already working on theproduction of incidence and mortality dataaccording to deprivation and analyses of PCTcancer spend against incidence/mortality. otherspecific analyses which are already in progress,both within NCIN and with NCIN partners,include:• prevalence (30-year) as at 2005, Englandand by SHA and <strong>Cancer</strong> Network – all majorsites (Thames <strong>Cancer</strong> Registry and Macmillan<strong>Cancer</strong> Support)


56 CANCER REFoRM STRATEgyChapter 9:Stronger commissioningProgress:• launch of <strong>Cancer</strong> Commissioning Toolkit• National <strong>Cancer</strong> Peer Review results for 2004/2007 published June 2008Priorities for the coming year:• <strong>Cancer</strong> Commissioning guidance to be available shortly• Further work to promote stronger commissioning• Promoting user involvement in commissioning• New peer review processIntroduction9.1 Stronger commissioning was identifiedas a second major lever (alongside betterinformation) for driving up the quality ofcancer care. The <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> (CRS)set out central and local actions to improvecommissioning of cancer services, and thischapter reports on progress.Enabling stronger cancercommissioning9.2 The National <strong>Cancer</strong> Action Team (NCAT)is working with the Department of Health (DH)World Class Commissioning (WCC) Team tosupport the step change that Primary Care Trusts(PCTs) and their <strong>Cancer</strong> Network teams will wantto make in commissioning cancer services. Draft<strong>Cancer</strong> Commissioning guidance (CCg) has beenissued to <strong>Cancer</strong> Networks and a final version willbe available shortly. The CCg is in two parts:• the first section highlights aspects of theWCC Assurance Framework, including theorganisational competences that thoseinvolved in cancer commissioning will wantto focus on• the second section sets out key issues andkey questions commissioners/networkteams will want to take into considerationwhen assessing health needs; reviewingservices; developing their contract servicespecifications and monitoring performance.9.3 In addition, a web-based <strong>Cancer</strong>Commissioning Toolkit (CCT) is available. Thetoolkit provides an easily accessible “one stop”source of cancer information. This overcomes thechallenge that national information on cancer,although publicly available, is currently held inseveral different places (cancer registry, cancerscreening service, hospital episode statistics,cancer peer review, programme budgeting,bespoke national analyses etc). The CCT bringsthis together into a single, web based product.Metrics have been selected and benchmarked toanswer key commissioning questions. The aim isto support commissioners/<strong>Cancer</strong> Network teamsin their strategic planning and prioritisation,


CHAPTER 9: STRoNgER CoMMISSIoNINg57enabling them to lead change and innovatelocally, based on best clinical evidence. Thebenchmarked information will inevitably promptfurther questions, but it is hoped that it will actas a catalyst for intelligent discussion betweencommissioners, local providers and the localpopulation.9.4 The NCAT and National <strong>Cancer</strong>Intelligence Network (NCIN) will support PCTs,<strong>Cancer</strong> Networks and other stakeholders touse the toolkit and will continue to work withthem on further refinements and developments.It is hoped that by making more use of theinformation that is available, data accuracy willimprove year on year. Significant support indeveloping the information has come from theNational <strong>Cancer</strong> Service Analysis Team, as wellas the <strong>Cancer</strong> Registries and the NHS <strong>Cancer</strong>Screening Programmes.9.5 A further important strand of work beingled by <strong>Cancer</strong> Network teams is the developmentof model service specifications for each cancerpathway, which will be available on the Mapof Medicine (MofM). Map of Medicine offershigh quality clinical information, linked to theNHS IT programme. The Network DevelopmentProgramme recommended colorectal pathway isalready on the MofM and this, together with anoverall methodology and governance framework,has been developed by North East london<strong>Cancer</strong> Network and MofM and supported bythe National Institute for Health and ClinicalExcellence (NICE). It is anticipated that modeldisease pathways and service specifications forthe main cancers will be available on the MofMby December 2008 to support the next roundof contracting. Individual <strong>Cancer</strong> Networksare leading on the development of differentpathways, within an agreed framework for signoffthat includes NICE.9.6 Throughout the CCg and CCT there arelinks to policy and guidance documents as wellas to the NHS Improvement website to ensurethat PCTs and Networks have ready access tobest practice examples of service innovation.9.7 In discussion with the CRS Advisory Board,it was pointed out that, although all <strong>Cancer</strong>Networks had plans to implement the CRS, thoseplans did not necessarily feed through into PCTcommissioning plans. Further work is needed onthis link. The NCAT will continue to work with<strong>Cancer</strong> Networks, PCTs and others to promotestronger commissioning. The PCT Chief Executiveswho act as chairs of the <strong>Cancer</strong> Networks plan toconsider next steps in terms of promoting bettercommissioning of cancer services.Box 18: Commissioning in North East London <strong>Cancer</strong> NetworkIn the North East london <strong>Cancer</strong> Network (NElCN), all PCTs will benchmark existing cancerpathways against the Network agreed clinically effective pathways and then identify differencesand gaps which are prioritised for tackling. The locally agreed pathway is what is thencommissioned.There are some 30 Network pathways, with agreed audit metrics/key performance indicators.These have been developed by cancer site specific Tumour Advisory Boards (TABs) who willmaintain and update them and who have also agreed the metrics against which they will nowmonitor compliance. These TABs are central to the pathway level clinical governance of theNetwork and the NElCN Service Specification for <strong>Cancer</strong>, together with National Peer Reviewmeasures, requires that providers make representatives of clinical teams available to attend thesegroups in the capacity of clinical advisors to commissioning.The NElCN Service Specification for <strong>Cancer</strong> – which is used by all PCTs in their NHS Contracts– sets out clearly what is expected of providers. The Specification includes governing principles,criteria which should be met by any provider wishing to offer cancer services, generic pathwayspecifications and site specific service specifications. The Service Specification is being reviewedand updated, to set out what PCTs should include in the 2009/10 contracts. This will include theintegration of national exemplar specifications for both chemotherapy and radiotherapy as theyare published.


58 CANCER REFoRM STRATEgyUser involvement9.8 The NCAT has set up a project to promoteuser involvement in commissioning.9.9 In discussing user involvement incommissioning with the CRS Advisory Board,members made the point that it was verypositive that user involvement was a core WCCcompetence. As part of the promotion of userinvolvement, the patient representatives on theAdvisory Board have offered to review <strong>Cancer</strong>Network plans for user involvement.Peer review9.10 The <strong>Cancer</strong> Peer Review Programmeprovides an important mechanism for assessingindividual teams and services against measureswhich are linked to service quality. Feedbackfrom peer review provides a useful stimulus toproviders to enhance the quality of the care theyprovide. Comparisons of the quality of localservices with national benchmarks is likely to beof value to commissioners.9.11 The national overview report on the PeerReview Programme 2004/07 was published inJune 2008. This covers all the <strong>Cancer</strong> Networksin England; 1069 multidisciplinary teams(MDTs) (breast, colorectal, lung, gynaecology,upper gI and urology), 1051 cross cuttingservices (imaging, pathology, radiotherapy,chemotherapy, specialist palliative care) andeight <strong>Cancer</strong> Registries. A great deal of goodpractice was observed, but also wide variation incompliance with measures.9.12 The peer review team has identified andcongratulated the best services, and followedup with those services where there were someconcerns – recognising that things may well havemoved on since the peer review assessment.9.13 For the future, there will be a 3-stagedapproach to peer review with:• the first stage being validated selfassessments completed annually by allteams and cross cutting services such aschemotherapy and radiotherapy• the second stage to be an externalverification of a sample of the selfassessments• the third stage to be a programme oftargeted peer review visits using agreedselection criteria and following discussionwith the appropriate cancer networks.9.14 This new approach will mean that moreteams and services will be reviewed, and willbe reviewed more frequently, while keeping theburden of review within reasonable limits.9.15 The first phase of implementation ofthe new approach to peer review will begin inJanuary 2009.Ensuring that tariffs supportservice improvements9.16 The CRS said that the funding mechanismfor cancer services should recognise andincentivise appropriate and effective care.9.17 PA Consulting group was commissionedto assess whether amendments are needed topayment by results so that it fully supports futurecancer services. They reported in January 2008and identified six priority issues:• improving coding quality and consistency• ensuring fair payment for MDTs• ensuring the structure of tariffs forchemotherapy drugs work in practice• separation from tariff of investment cost ofradiotherapy bunkers• a separate cancer outpatient tariff in keyspecialties• fair payment for highly complex cancerprocedures.9.18 The Information Centre (IC) has alsorecently re-established its <strong>Cancer</strong> ExpertReference Panel. The NCAT is fully engagedwith the process and has worked closelywith colleagues within radiotherapy and


CHAPTER 9: STRoNgER CoMMISSIoNINg59chemotherapy services to develop improvementsaround coding and other principles. Thereare working groups across these two areasco-ordinated by the NCAT which have maderecommendations to the IC group. Members ofeach of the groups are drawn from clinical teamsfrom Trusts and also their finance colleagues.To date these groups have agreed reviseddefinitions of services and are supporting thedevelopment of guidance that goes out to theservice.9.19 Forty Trusts providing radiotherapyservices have established a benchmarking clubto accelerate the development of an appropriatetariff. There are also plans to develop a smallbenchmarking group for chemotherapy services.9.20 Further work is under way and this willneed to be prioritised in 2009.


60 CANCER REFoRM STRATEgyChapter 10:Funding world class cancer care10.1 The <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> (CRS)reported an increase in cancer expenditureover the previous three years, as measured byprogramme budgeting. The figure for 2006/07had been published a few weeks before thelaunch of the CRS and showed a 27% increasein expenditure over three years. Because ofchanges to the reference cost system, figuresfor 2007/08 have not yet been published. It istherefore not possible to provide an update.However, when the figures are available, furtherdetailed work will be commissioned to explorereasons for variations in expenditure on cancerby Primary Care Trust.


61Chapter 11:Building for the futureIntroduction11.1 While the <strong>Cancer</strong> <strong>Reform</strong> <strong>Strategy</strong> (CRS)set out a wide range of actions to improvecancer services and outcomes, it also recognisedthat the changing cancer environment meantthat we would need to continue to assessprogress and amend our approach in the lightof developments. This chapter looks at issues forthe future.A skilled and flexible workforce11.2 As the CRS said, in general, workforcedevelopment and the commissioning of trainingprogrammes is the responsibility of StrategicHealth Authorities and Primary Care Trusts.However, where it makes sense to identifyand commission training pilots at a nationallevel, this would be done. For example, theDepartment of Health (DH) and the National<strong>Cancer</strong> Action Team (NCAT) have taken forwardnationally the programme to pilot, evaluate androll out surgical master classes relating to thetreatment of prostate cancer. other workforcedevelopments have been reported in previouschapters. The DH and the NCAT will continueto have a national role when appropriate.Develop environmental qualitymark for good cancer facilities11.3 Macmillan <strong>Cancer</strong> Support haveappointed a project manager to oversee thispiece of work. As a first step, a literature reviewis being undertaken to provide the evidencebase for the impact of environments on patientsand outcomes. Stakeholder events are plannedto be held between January and April 2009.It is anticipated that a baseline assessment ofcurrent facilities will be undertaken in volunteernetworks. A tool to assess facilities againsta standard will be developed with a view topiloting it before the end of the year. links arebeing made with the DH Estates and Facilitiesteams, as an update of the Health BuildingNote on <strong>Cancer</strong> Facilities is currently beingundertaken, and with Breakthrough Breast<strong>Cancer</strong> and their work on Service Pledges forBreast <strong>Cancer</strong> which also address environments.Good horizon scanning11.4 Two of the expert groups – prostate andbreast – established to develop the site-specificvisions for cancer services in 2012 have metagain, and their discussions have fed into theimplementation of the CRS and into thinkingaround this annual report. The DH plans to revisitthe visions systematically for the future.High quality cancer research11.5 The DH is a key member of the National<strong>Cancer</strong> Research Institute (NCRI). The NCRI is apartnership of the UK's major funders of cancerresearch including government, charities andindustry, together with patient representatives.Its purpose is to ensure a national strategicapproach to cancer research. The DH is a majorfinancial contributor to NCRI initiatives suchas: the NCRI Prostate <strong>Cancer</strong> Collaboratives;the NCRI Supportive & Palliative Care (SuPaC)Collaboratives; the National Prevention ResearchInitiative; and initiatives in response to the NCRIreport on lung <strong>Cancer</strong> Research. The NCRIStrategic Plan for 2008-2013 includes newinitiatives on survivorship; earlier diagnosis;and inequalities.11.6 The National Institute for HealthcareResearch (NIHR) <strong>Cancer</strong> Research Networkcontinues to provide coordinated NHSinfrastructure (staff and other NHS costs)


62 CANCER REFoRM STRATEgyembedded in the cancer service networks tosupport later-phase clinical trials and otherwell designed studies in cancer. The latestinformation shows that about 11% of cancerpatients in England are entering clinical studies –this is the highest percentage in the world.11.7 The 15 NIHR/<strong>Cancer</strong> ResearchUK Experimental <strong>Cancer</strong> Medicine Centres(ECMCs) in England are together carryingout over 300 early-phase trials of newinterventions for cancer. Their aim is to speedup the development of new therapies byevaluating novel drugs and biomarkers, thusindividualising patient treatment. This year, theDH has committed an additional £8.5 millionto the ECMCs, and other centres, in the formof NIHR capital funding for cancer equipmentincluding imaging.11.8 The NIHR has created twelveBiomedical Research Centres within ourleading NHS and University partnerships todrive progress on innovation and translationalresearch in biomedicine. The Royal MarsdenHospital/Institute of <strong>Cancer</strong> Research partnershiphas won NIHR Specialist Biomedical ResearchCentre status in cancer involving fundingof £46 million over five years.11.9 NIHR Senior Investigators are the mostprestigious health and social care researchers.They make the most outstanding contributionto patient and people-focused health research.Twenty three of the first hundred NIHR SeniorInvestigators are cancer researchers.<strong>Annual</strong> report for 200911.10 This first report on progress onimplementation of the CRS necessarily focuseson the key commitments which require nationalcoordination, together with some examples ofprogress at <strong>Cancer</strong> Network level. As the reportshows, a great deal of progress has been madeboth nationally and locally. At <strong>Cancer</strong> Networklevel, one of the main priorities during 2008 hasbeen to assess how best to incorporate newpriorities from the CRS into local cancer strategiesand commissioning plans. At the request of theCRS Advisory Board, the annual report for 2009will have a greater focus on local implementation.


63AnnexRELEVANT DOCUMENTSPUBLISHED SINCE THEPUBLICATION OF THE CANCERREFORM STRATEGY• Transforming Inpatient Care Programme for<strong>Cancer</strong> Patients, The Winning Principles, NHSImprovement, April 2008• NHS Cervical Screening Programme:Achieving a 14 day turnaround timefor results by 2010, Department ofHealth, April 2008 – www.dh.gov.uk/en/Publicationsandstatistics/Bulletins/theweek/DH_084378• Ensuring PbR supports delivery of effectivecancer services. PbR final assessment –Recommendations and findings – finalreport, May 2008 – www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndguidance/DH_086877• Project Plans for Increasing RadiotherapyCapacity, National <strong>Cancer</strong> Action Team,August 2008 – www.cancer.nhs.uk/radiotherapy/commissioning.htm• National <strong>Cancer</strong> Peer Review Programme2004-2007. overview of the findings fromthe second round of peer reviews of cancerservices in England, National <strong>Cancer</strong> ActionTeam, June 2008 – www.cquins.nhs.uk/• End of life Care <strong>Strategy</strong>: Promoting highquality care for all adults at the end of life,Department of Health, July 2008 – www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndguidance/DH_085307• Health Inequalities: Progress and Next Steps,Department of Health, June 2008 – www.dh.gov.uk/en/ Publicationsandstatistics/Publications/PublicationsPolicyAndguidance/DH_086277• High quality care for all: NHS Next StageReview, Department of Health, June 2008 –www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndguidance/DH_085825• Updated national guidance on the safeadministration of intrathecal chemotherapy.HSC 2008/001, Department of Health,August 2008 – www.dh.gov.uk/en/Publicationsandstatistics/lettersandcirculars/Healthservicecirculars/DH_086870• Key Messages for ovarian <strong>Cancer</strong>,Department of Health, october 2008 –www.nhs.uk/livewell/cancer/Pages/ovariancancer.aspx• Transforming Inpatient Care Programme for<strong>Cancer</strong> Patients – Meeting the Challengetogether….delivering care in the mostappropriate setting – supporting delivery,NHS Improvement, october 2008 – www.improvement.nhs.uk/cancer/documents/inpatients/Inpatients_Meeting_the_Challenges.pdf• Improving access to medicines for NHSpatients – A report for the Secretary ofState for Health by Professor Mike RichardsCBE, November 2008 – www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndguidance/DH_089927


64 CANCER REFoRM STRATEgy• End of life Care <strong>Strategy</strong>: Quality MarkersConsultation, Department of Health,November 2008 – www.dh.gov.uk/en/Consultations/liveconsultations/DH_090077• Chemotherapy Services in England: Ensuringquality and safety – a report from theNational Chemotherapy Advisory group,November 2008 – www.dh.gov.uk/en/Consultations/liveconsultations/DH_090150• <strong>Cancer</strong> Commissioning Toolkit –www.cancertoolkit.co.uk/PublicPages/login.aspx?ReturnUrl=%2fDefault.aspx&AspxAutoDetectCookieSupport=1NCIN publications, available at www.ncin.org.uk:• Publication of Incidence and Mortality by<strong>Cancer</strong> Network, June 2008• launch of the National <strong>Cancer</strong> e-Atlas,July 2008• Publication of <strong>Cancer</strong> Prevalence in the UK,July 2008• Publication of Incidence and Mortality for allUK <strong>Cancer</strong> Networks, october 2008• Publication of 1 year Survival by <strong>Cancer</strong>Networks, october 2008• Publication of Trends in 1 year Survival,october 2008• launch of the National <strong>Cancer</strong> InformationService (NCIS), october 2008


© Crown copyright 2008291692 1p 1k Dec 08 (CWP)Produced by COI for the Department of Healthwww.dh.gov.uk/publications

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