National End of Life Care Strategy - Merseyside & Cheshire Cancer ...

Welcome toThe Annual Joint ConferenceThe Merseyside and Cheshire Cancer NetworkEnd of Life and Palliative Care CNGandThe National Council for Palliative CareThursday 7th July 2011

National End of Life Care StrategyPre pathwayStep 1Step 2Step 3Step 4Step 5 & 6RaisingAwarenessDiscussionsas the endof lifeapproachesAssessment,care planningand reviewCoordinationof careDelivery ofhigh qualityservices indifferentsettingsCare in thelast daysof life andcare after deathMeasurement - Intelligence network ,quality markers , VOICESSpirituality, User involvement, Information/support for patients and carersWorkforce – competences, E-learning, methods of delivery, facilitators networkCommissioning, currency and pricing, provider development, service improvementCross boundary working/sharing good practice, communications strategy, events ,website

Using the end of life care pathway

Six key levers for improving end of life carein acute hospitals• Co-ordinated care and discharge planning based on assessed needand by working with community and social care• Senior clinicians making decisions close to the patient andintervening early• Use recognised support tools such as advance care planning and theLiverpool Care Pathway of the dying• Strong oversight and support from the board and senior management• Training and education appropriate to each team member’s role• Access to a hospital specialist palliative care team

Improved outcomes• Improved patient experience and quality of care• Improved the hospital’s reputation• Reduce complaints• Enable people to die in the place they chose• Put control in the hands of the hospital with potential cost benefitsfrom reducing unnecessary costly interventions• Skilled workforce with higher morale and improved retention• Access to a hospital specialist palliative care team

Productive Ward - EOLC• Locality registers• Advanced care planning• Amber bundle• LCP(Two tiered approach – executiveengagement)• QIPP

Celebrate whatyou want to seemore of’Tom Peters

NCPC & Dying MattersProgress & Prioritiesfor 2011/12

Subscriber Survey: What you toldus• 100% think our publications and DVDs areinformative or very informative• 96% agree or strongly agree that NCPC effectivelycommunicates palliative and end of life priorities tonational and regional decision makers• 90% think the subscription is good value for moneyespecially with free Dying Matters membership too

COALITIONGOVERNMENTCoalition politics• Coalition withoutrecent precedent• Aim for a 5-year 5parliament – nextelection 7 May 2015• Andrew Lansley (C) -Sec of State forHealth- majorreform/cuts/ pause• Paul Burstow (LD)-Care ServicesMinister- cross cuttingLiberal Conservatives

DON’TCHANGE JUSTBECAUSETHERE’S S A NEW• True in May; truetoday:GOVERNMENT• More older people• More dementia andmultiple conditions• More people will dieeach year• Good and badexperiences at home,in care homes andhospitals

Joining up people public experienceswith policy analysis and practicalsupportPublic•• Equip people to tomake choices areality•• Campaign to tomake end end of of life lifecare care everybody’sbusinessPeople• Developinvolvementtechniques &measurement• Listen and act onwhat people sayPolicy•Develop End ofLife Careintelligence•Build communitycapacity

Our New NCPC Websitewww.ncpc.org.uk

3 Challenges for this Parliament• “Ensuring a good death for everyone”should be a key quality outcome for allcommissioners and providers across health andsocial care• Access to co-ordinatedordinated 24/7 end of life careservices to enable people to remain in home andcommunity settings of their choice• Empowering people to talk about dying,death and bereavement and to make plans fortheir end of life care and support

Our Vision for our 20 th AnniversaryYear People will be aware of choices and issues of• dying, death and bereavement People will be able to make informed choicesin order to get their needs met People and professionals will be equipped tomeet those needs and wishes

2010/11: Involving PeopleAchievementsGrew our work with people with personal experience,involving them in all aspects of our workListened to patients and carers and learnt from themLaunched our series of ‘how to involve people’ leafletsoutlining a range of practical examples of involvementLaunched our Difficult Conversations rangeLaunched our ‘Can You See Me?’ DVDWorked with a range of communities to test out the DyingMatters leaflets and develop key messages and resources inpartnershipWorked with schools in Hackney and Lewisham

THE DYING MATTERS COALITION• Set up by the National Council for PalliativeCare, the umbrella Charity for all thoseinvolved in palliative care, to support the2008 End of Life Care Strategy• It is a broad based, inclusive nationalCoalition, working in partnership, with over15,000 members s from across the NHS andvoluntary and independent health and caresectors, social care and housing, faith,community and retirement organisations,schools, legal, insurance and funeralsectors.19

RESEARCH AND INSIGHT

IMPLICATIONS FORACTIONSCommunicationis the key needed to makeit easier for more peopleto talk about itThe “It’s a long wayoff” perception:People more likelyto talk to trustedfamily membersand GPsDifferentApproaches/toolsNeeded for differentgroups/audiencestarget groups:55 – 65s65 – 75sGPs

DYING MATTERS SUCCESS• Party for Kath won HC in IVCA Clarion VideoAwards 2010• Awareness Week our second nationalweek saw a step change in activities withnational and local events• Website successful with public facingwebsite pages for the NHS EolC QIPPcampaign• 75,000 leaflets sent out• GP pilots improved confidence & patientexperienceC itit

DYING MATTERS GP PILOTPROJECT• Aim: Support GPs inconversations withpatients & relatives aboutdying & death• 31% of public wantinformation about EoLCfrom their GP• 75% of GPs agree theyshould encouragepatients to plan for EoLC,yet, only:• 5% of GPs have written aOur PilotEvaluationResults• It is possible toincrease GPsconfidence inhaving end of lifeconversations• Conversationsbetween GP andpatients, familymembers and

Media Highlightsfrom AwarenessWeek May 2011• Over 200 print and online media coverage – with 10 millionopportunities to see coverage on first day of Dying MattersAwareness Week alone• Estimated radio reach of 32 million on first day of DyingMatters Awareness Week alone plus coverage across the weekincluding major item on BBC Radio 4’s 4 s Midweek Programme• Five different articles in three national newspapers- aneditorial in The Guardian in support of palliative care and talkingabout dying and prominent coverage in The Times• Articles online- include Daily Mail website (the most readnews website in the UK, with over 3.5 million daily visitors), TheGuardian (2.4 million daily visitors) and The Mirror (631,000 dailyvisitors)www.dyingmatters.org

Media Highlightsfrom Dying MattersAwareness Week• Articles and coverage across health and care media includingBritish Medical Journal, Nursing Times, Health Service Journal andCommunity Care. . Both BMJ and Nursing Times ran polls wesuggested on end of life care, which formed the basis of additionalnews coverage•• Substantial regional and local media coverage with extensiveprint and broadcast coverage for member-led activities•• Over 20 radio interviews plus interviews across regional radiowith coalition members; adverts from the NHS also ran oncommercial radio in the North West on Smooth Radio and RealRadio

Community Group Members• Local Hospices• Funeral Directors & Solicitors, financial advisors• Local Age Concern , NPC & other pensionerorgs• Care Homes• Nursing Homes• Housing Associations• Local Authorities• Schools• GPs, Carers• Acute hospitals• Community Champions•Faith &belief Groups• Bereavement groups• PCTs, SHAsOutcomes• More conversationsleading to more planning,including PPC and ACP• More DM members• Greater priority for end of life careCommunity DevelopmentProgrammeOutputs• Local networkof engagedorganisations• Supportingmaterialsencouragefuture planning• Local eventsduring 2011/12• Higher localprofile for DMImpact• More people’s wishes are met• Improved end of life care

Practical resource withinformation and tipsfrom different sectorson how best to worktogether to raiseawareness incommunities

Community Resources• Practical resource pack with tips fromdifferent sectors on how best to work togetherto raise awareness in communities• Volunteer educator Pack - training packprepares volunteers to share information aboutadvance care planning in their local communitiesor workplaces.• A guide for trainers, , handbooks,presentations and handouts, evaluation sheetsand a resource list• Developed with the University of Nottingham

COMMUNITYWWW.DYINGMATTERS.ORG/COMMUNITYEasy to use• Simple registration process• Offers forums, blog, share your event/story• Users can post comments in forum and blogYou can:• Register & postcomments• Add links &buttons to yourwebsites• Provide expertcomment/ opinion• Join DM Twitter &Facebook

TWITTER AND YOUTUBEUploads: 6Twitter statsFollowers: 811 (+188%,January 2011)YouTube statsTotal upload views: 2,404 (+210%, January 2011)

HOW DYING MATTERS USERSCURRENTLY ENGAGE WITH USFacebook Key Stats, May 2011• 887 ‘Likes’ (+70% Jan 2011)• 68,887 post views (+265%)• 275 post feedbacks (+145%)GENDER74% women 22% maleAGE45-5454 28%35-4424%25-3421%55+ 10%18-248%13-1717 2%

What You Can Do

Welcome toThe Annual Joint ConferenceThe Merseyside and Cheshire Cancer NetworkEnd of Life and Palliative Care CNGandThe National Council for Palliative CareThursday 7th July 2011

National OverviewEND OF LIFE CAREProfessor John EllershawProfessor of Palliative Medicine – Marie CuriePalliative Care Institute - University ofLiverpoolNational Deputy Clinical Director for End ofLife Care – Department of Health

Actual and Projected deaths Englandand WalesSource : Gomes and Higginson; Where people die (1974–2030): past trends, futureprojections and implications for care., Palliative Medicine 2008; 22: 33–41

An ageing populationEngland : The proportion of the total population aged 65 and over25Proportion of all ages population201510565‐7475‐8485+02006 2010 2020 2030Source :Office of National Statisticshttp://www.statistics.gov.uk/downloads/theme_population/NPP-2006/NPP06_NSOnline.pdf

Place of death by age and sex, percentage of deaths in malesand females in each age group in England 2005–070770%60%Percentage of deaths in age group50%40%30%20%10%0%Elsewhere Hospice Hospital Nursing home Old people'shomeAge group (years)

The NHS NorthwestEnd of Life Care ModelUK1 2 3 4 5Advancing diseaseIncreasingDeclineLast Daysof LifeFirst Daysafter DeathBereavement1 year6 monthsDeath1 year


End of Life Care StrategyKey elements:• Societal level:Actions to raiseawareness of death andand to change attitudes• Individual level:Integrated servicedelivery based aroundpathway• Infrastructure:measurement,f di ti l t ta caredyingWorkforce development,research,

Measurement & Outcomes• Place of death (from death certification)QUIPP• National End of Life Care IntelligenceNetwork will bring together differentdatasets e.g. HES, ONS, GPRD andsocial care• VOICES – surveys of bereaved relativeswill provide a proxy for quality of caregiven to patients at the end of life

Treatment and care towards the end oflife:good practice in decision making

National Drivers1. Operational Framework 2011 – End ofLife Care2. Outcomes Framework 20113. QIPP – Stream4. QOFF – Measures5. National Tariffs – Summer 20116. NICE Standards – Summer 20117. CQUINS and Proms

End of Life Care in TheNorth WestProfessor John Ellershaw


Ombudsman's Report2011• Investigation undertaken by the health serviceombudsman into complaints made about the care of10 older people.• Each investigation was completed independently butthe report has been pulled together because ofsome common themes and areas of concern.• Each investigation highlighted ‘a a stark contrast incare delivered compared to the principles of NHSvalues’.• 9 out of 10 patients included in the report died

Mr Js Story.• Mr Js wife admitted to hospital from a Nursing home. History ofDementia but Mr J and he’s s wife spent time together every daysand enjoyed each others company.• Asked to wait in the waiting room of A&E. He was forgottenabout and it was only when Mrs J had died that the staff rangthe nursing home to be reminded that Mr J was actually at thehospital.• Decision made not to resuscitate with no discussion with herhusband.‘They let her slip away under the cloak of “quality of life”without stopping to think of any other involved party’• Mr J felt the hospital had denied them the chance to betogether in the

Mr D’s D s StoryDischarge home described as a shambles:• Daughter arrived to find her fatherin adistressed state behind curtains.• In pain, desperate to go to the toilet.• Buzzer out of reach.• Drip bag disconnected and fallen with fluid all over the floor.

Mr D’s D s StoryDischarge home described as a shambles:• Daughter arrived to find her fatherin adistressed state behind curtains.• In pain, desperate to go to the toilet.• Buzzer out of reach.• Drip bag disconnected and fallen with fluid all over the floor.• Ambulance did not arrive until 2.30pm. Familytook father home.• Not enough pain killers were provided.• Family spent weekend trying to get painkillersprescribed.• Father died 3 days later.‘Family felt they were deprived of spending

‘The investigations reveal an attitude –both personal and institutional – which failsto recognize the humanity and individualityof the people concerned and to respond tothem with sensitivity, compassion andprofessionalism’

Using the end of life care pathway

Six key levers for improving end of life carein acute hospitals• Co-ordinated care and discharge planning based on assessed needand by working with community and social care• Senior clinicians making decisions close to the patient andintervening early• Use recognised support tools such as advance care planning and theLiverpool Care Pathway of the dying• Strong oversight and support from the board and senior management• Training and education appropriate to each team member’s role• Access to a hospital specialist palliative care team

Improved outcomes• Improved patient experience and quality of care• Improved the hospital’s reputation• Reduce complaints• Enable people to die in the place they chose• Put control in the hands of the hospital with potential cost benefitsfrom reducing unnecessary costly interventions• Skilled workforce with higher morale and improved retention• Access to a hospital specialist palliative care team

Productive Ward - EOLC• Locality registers• Advanced care planning• Amber bundle• LCP(Two tiered approach – executiveengagement)

Implementing the Renal End ofLife Care Strategy:The impact of a practice educator on endof life care for renal patients.Joan DevereuxMacmillan Nurse

Chronic Kidney Disease (CKD)• Estimated 10-15% 15% of population• Affects people of all ages• Is classified into 5 stages according to estimatedGlomerular Filtration Rate (eGFR)• Stage 1 is the mildest form• Stage 5 is the most severe (advanced kidney disease)• Patients with eGFR less than 15 (

Why do people with advanced kidneydisease need end of life care?Advanced Kidney DiseasePatients whose CKD progresses to end stagekidney disease will die without interventionPatients can choose:• Renal Replacement Therapy (RRT)• Conservative kidney management(everything but dialysis)

End of Life Care in Advanced KidneyDisease: A Framework forImplementation (June 2009)• End of life care important for everyone withadvanced kidney disease but especially for thosewho:• decide not to undergo dialysis• choose to withdraw from dialysis after a period oftreatment• are coming to the end of their lives while already onlong term dialysis• have a failing transplant and decide not to return todialysis

Aims of Project• End of life care education for renal staff• Increase in the use of the EOLC tools• Gold Standard Framework• Advance care planning / PPC• Liverpool Care Pathway• Supportive Care Register• Improve the end of life care for renalpatients

The Project:• Introductions• Steering group development• Education strategy development• Experiential learning• Delivery of education• Data collection• Audit• Resource

Renal Palliative Care• Greater insight into the “life” of the renalpatient• Need for high quality end of life care• Stopping, failing on dialysis• Conservative Management• Failed transplant• Collaborative approach to care• Advice & support• Complex cases• Symptom management• Out of hospital EOLC

What We Learned• Engage staff to see that EOLC was relevantto their practice• Taking on a large geographical area as 1person• Keep their engagement in the provision ofeducation & motivation• Encourage change in attitudes & practice• Releasing staff for education, time formedical education• Understanding the process of advancingdisease & symptom management in ESRF

Success Factors• Being there – part of the team, showing byexample• Ongoing & supporting experiential learning• Identifying champions & clinical leaders• Clear goals to give to staff• Data collection• Staff being released for education• Team approach, concurrent education ofmedical & nursing staff• Congruence in attitudes & approach

Audit OutcomesThe project has demonstrated:• Increased Use of the Liverpool Care Pathway onthe ward.• Increased Use of the Liverpool Care PathwayCare after Death section• Increased number of Preferred Priority for Carediscussions• Increased number of discharges for care outsidehospital at end of life.• Increased staff knowledge and confidence inend of life care.

Take Home Message• Renal patients require end of life care• Urgency with CM patients• High quality symptom management• Partnership working• two way learning• Engaging with ‘local’ palliative care services• Specialist renal advice available (hub/spoke)• Prescribing guidance & support leaflets (MCCC)• Communication and outcomes

Conclusions• Renal failure is common• End of Life Care Strategy is for all• Patients have a right to good care• Changes in attitude and practice• Collaborative working & shared learning• across teams & boundaries• Education is key to good end of life care• Communication pivotal

Questions?

Workshop QuestionsQuestion 1• What end of life care education needs tobe provided?• What are the gaps in skills/knowledge ofstaff?• Where do you start?

Workshop QuestionsQuestion 2• What are the challenges to end of life careeducation provision?

Workshop QuestionsQuestion 3• Why is data collection important?• What data do we need to collect?• How can we build-in in a data collection system?

Workshop QuestionsQuestion 4• How do you motivate staff to improve endof life care?

Today ‘Leadership’ concerns• A guiding vision• Shared values• Influence – not command& control• Personal & organisationalintegrity• Building respect &understanding across oldboundaries to achievecommon purpose• Genuine enthusiasm andbelief about what you wantto achieve• SHARED RESPONSIBILITYNOT ONE PERSON’S S JOB

The Leadership Impact Programme• Designed to strengthen leadership capability inPalliative and End of Life Care acrossMerseyside and Cheshire and the North West• Participants will be in key roles in palliative andend of life care

KEY IDEAS FOR DESIGN1. Strengthening the network2. Following the pioneers3. Safety first4. Personal to collective5. Getting uncomfortable6. Maximising strengths7. Making a difference at work

1.Strengthening the Network

2. Following thepioneers

3. SafetyFirst

4. Personal to collective4. Individual to Collective

5. GettingUncomfortable

6. DiscoveringandMaximising Strengths

Key Features of the Programme• Stepping outside your day to day work to reflect on yourstyle and leadership challenge• Opportunity to work with and learn from others in similarroles, facing similar challenges• Feedback from a range of sources on your leadershipstyle and behaviour and its potential impact on yourworkgroup and effectiveness• Individual coaching and group work providing supportand challenge aimed at designing and implementing apersonal leadership development action plan

Programme Elements• Launch & Briefing• Leadership Impact Workshop 24 th May• Coaching Session & Buddy Meeting June• Two-day Development Centre 13 th and 14 thJune• Coaching Session and Buddy MeetingJune/July• Leading in Context Workshop 6 th July• Buddy Meetings• Leading Change Workshop 14 th September

Building links with partners inlong term conditionsKim WrigleyEnd of Life Care Lead&Joanne LangtonQuality Improvement Manager

Joint Working• Representation on GM cross cutting group• Sharing information, knowledge and skills• Adding value to end of life in heart failure discussions• Collaboratively supporting education and development• Increased opportunities to network

• Input to GM heart failure nurses group• Case studyJoint Working• Provision of peer support and advice• Advance care planning• Improved communication of local & national issues• Evolving to include other non malignant diseases• Workforce developmentAccess to advanced communication skills training

Annual Collaborative End of Life Event• ICD Deactivation2010(Implantable Cardioverter Defibrillator)• Many issues• No infrastructure – adhoc basis• Working group established• Developing a GM network operational policy

Annual Collaborative End of Life Event2011 Good mix of specialities made the day interesting.Common themes emerged in all presentationshighlighting that palliative care principles can beapplied to any speciality. This was an excellent day,lots of diversity and very thought provoking.Palliative Care Community Nurse SpecialistAnAnenjoyable,enjoyable,informative,informative,wellwellstructuredstructuredandandwellwellbalancedbalancedevent.event.Didn’tDidn’tfeelfeeltalkedtalkedat,at,sessionssessionswerewereengagingengagingbothbothintellectuallyintellectuallyandandemotionally,emotionally,andandthoughtthoughtprovokingprovokingbothbothprofessionallyprofessionallyandandpersonally.personally.ThankThankyouyouforforaasupersuperdayday:):)SocialSocialWorker VeryWorker Verygoodgoodinformativeinformativeday.day.GladGladIIattendedattendedititandandbookedbookedtimetimeoff.off.WillWilltaketakethisthisbackbackwithwithmemetotowork.work.WouldWouldsuggestsuggestthatthatusersuserscommentscommentsononscreenscreenarearenotnotspokenspokenoveroverbybythethespeakers.speakers.DifficultDifficulttotoreadreadandandlistenlistenatatthethesamesametime.time.SocialSocialWorkerWorkerIIfoundfoundthisthistotobebeaaveryveryenjoyableenjoyabledaydaywithwithlotslotsofofvaluablevaluableinformationinformationwhichwhichIIwillwillcarrycarrywithwithmemeintointomymyjobjobrole.role.TonyTonyBonserBonserwaswasaarealrealassetassettotothetheconferenceconferencehishispassionpassionandandcommitmentcommitmentisisinfectious.infectious.DeputyDeputyManagerManagerThis was the best day of training I can remember.I would only say a greater involvement by socialcare may be a good thing in the future. Reducedstaffing budgets and resources are making it sodifficult to deliver good practice which events likethis inspire. Team Manager

Future Plans• 6 monthly post event review• Continued representation of groups• Peer support meetings & updates• Inclusion of other non malignant diseases/long term conditions• Maintenance of good communication links• Continued dissemination of information,national/local updates & educationalsupport

Thank youAny Questions?













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QIPP – Demand and ThresholdManagement workstream - EOLC

• Brief re-cap of the QIPP (Quality, Innovation,Productivity & Prevention) challenge• NHS structure in response• Accountability framework• Overview of demand and threshold managementworkstream• Brief focus on demand• And then EoLC:‣ Size of the challenge‣ Why – we should do it‣ How – we can do it (better)

QIPP challenge• Limited financial growth for the NHS from2011/12• The NHS needs to identify £15– 20 billionof efficiency savings by the end of2013/14 to meet the healthcare demandsof a growing and ageing population for re-investment to continue to deliver year onyear quality improvements

National and regional response..National workstreamsNW workstreams• Safe Care• Right Care• Long Term Conditions• Urgent Care• End of Life Care• Procurement• Productive Care• Medicine use and procurement• Primary Care• Technology and digital vision• Demand and ThresholdManagement• Estates• Informatics• Prescribing and MedicinesManagement• Primary care contracting• Procurement and supply chain• Provider productivity• Transforming CommunityServices• Workforce and Leadership

Accountability Framework“Each level does what only it can do”L1 – Individuals &Individual Organisations•Efficiency•Clinical Quality Imp•Sale of Assets•Level of reserve•Int pathwaymanagement•LA / NHS Efficiency•Primary careL4– Region wide / SHA Level•Economies of Scale•Standardisation of pathways•Regional Commissioning•Residual workstreams•I Manage IT / Education spend•Set direction / rules (intervention)•Manage UpL3 – Footprint Group•Acute Configuration•Distribution of specialist business•Collective Commissioning•Piloting innovation•Standardisation of Pathways•R & DL2 –Health EconomyPCT & Preferred Supplier•Care Pathway•Community services•Level of reserve•Civic Leadership•Demand MngtL5 –National Work•Pay•Tariff•Financial Planning•Central budgets•Policy change

Demand and Threshold Management• What’s s been happening to demand across the NorthWest?• Approach• The QIPP Steering Group Work Programme• Care Pathway Group Reports• North West Case Studies• Long Term Conditions• Shared Decision Making• End of Life Care• Procedures of Limited Clinical Value• Dental Care• Utilisation Management Data Deep Dives Reviews

MonthDifference from previous yearMar-11 YTD Difference 2from planMarch 11Difference from previous yearGP Referrals Other Referrals All Referrals OP Attendances Elective Ordinary Elective Daycase Total Elective Non-electivePCTs Difference % Difference % Difference % Difference % Difference % Difference % Difference % Difference %5HG Ashton, Leigh & Wigan 4382 6.37% 3723 9.25% 8105 7.43% 8274 8.56% 172 1.64% 4191 12.16% 4363 9.70% 1184 3.40%TAP Blackburn with Darwen 2236 6.78% -860 -7.72% 1376 3.12% 2175 4.95% -771 -12.30% 1706 10.69% 935 4.21% 308 1.59%5HP Blackpool 2870 9.33% 2539 11.07% 5409 10.07% 13923 32.86% -90 -2.12% 668 3.19% 578 2.30% 834 3.93%5HQ Bolton 4828 7.77% 1183 3.30% 6011 6.13% 8097 9.40% -104 -1.13% 1605 7.08% 1501 4.72% 967 3.40%5JX Bury 1923 5.14% 102 0.41% 2025 3.24% 5107 8.91% -626 -8.04% -1606 -6.37% -2232 -6.76% 954 4.60%5NP Central & Eastern Cheshire 3587 4.32% -6267 -10.60% -2680 -1.89% -1700 -1.26% -1026 -7.67% 1677 3.96% 651 1.17% 2460 4.82%5NG Central Lancashire 3319 3.14% 2831 5.48% 6150 3.91% 1086 0.73% -735 -4.51% 2242 3.73% 1507 1.97% 1493 3.02%5NE Cumbria 689 0.61% 1267 3.75% 1956 1.34% 2061 1.51% -692 -3.58% 2044 3.83% 1352 1.86% 1187 2.26%5NH East Lancashire 126 0.14% -4020 -12.79% -3894 -3.29% 526 0.45% -1702 -10.95% 2204 4.89% 502 0.83% 1715 4.19%5NM Halton & St Helens 271 0.38% 3494 11.14% 3765 3.64% 8377 9.20% -118 -1.18% 904 2.73% 786 1.82% 1770 4.51%5NQ Heywood, M'ton & Rochdale 4248 10.22% 881 3.03% 5129 7.27% 6067 9.05% -609 -7.08% -728 -2.59% -1337 -3.64% 915 3.43%5J4 Knowsley -1019 -2.20% 1759 7.66% 740 1.07% 763 1.26% -191 -3.70% 506 2.78% 315 1.35% 10 0.04%5NL Liverpool 7026 6.02% 2352 2.26% 9378 4.25% 3578 1.72% -804 -5.64% 937 1.89% 133 0.21% -1088 -1.58%5NT Manchester -5748 -4.55% -1327 -1.30% -7075 -3.10% 21018 13.16% -2381 -12.56% 2303 4.81% -78 -0.12% 4816 7.16%5NF North Lancashire 2923 4.27% 16007 57.56% 18930 19.67% 10309 11.65% -114 -1.06% 618 1.39% 504 0.91% 1437 3.89%5J5 Oldham 1919 4.49% -966 -3.13% 953 1.29% 2363 3.43% -510 -6.35% 943 4.08% 433 1.39% 3592 13.28%5F5 Salford -893 -1.69% 490 1.31% -403 -0.45% 2648 3.92% -514 -6.19% 1554 7.10% 1040 3.45% 5250 17.93%5NJ Sefton -956 -1.40% 563 1.39% -393 -0.36% -2034 -2.04% -494 -5.22% -1094 -2.99% -1588 -3.45% 949 2.85%5F7 Stockport 1121 1.74% 623 1.34% 1744 1.57% -886 -1.00% -1688 -14.24% 2149 7.97% 461 1.19% 1168 3.31%5LH Tameside & Glossop 496 0.92% 4921 13.91% 5417 6.07% 3650 4.45% -660 -7.82% 178 0.74% -482 -1.49% 1600 6.20%5NR Trafford 59 0.09% 410 1.29% 469 0.49% -1906 -2.37% -185 -2.29% 834 3.14% 649 1.87% 2204 10.53%5J2 Warrington -1067 -3.13% 381 1.72% -686 -1.22% -202 -0.38% 113 1.95% 66 0.35% 179 0.72% 548 2.30%5NN Western Cheshire -1344 -2.59% -568 -1.14% -1912 -1.88% -1864 -2.32% -126 -1.45% 2142 7.59% 2016 5.47% -1187 -4.09%5NK Wirral 3270 5.31% 7559 19.92% 10829 10.89% -1235 -1.27% -479 -4.35% 832 2.33% 353 0.76% 1088 2.56%Q31 NHS North West 43674 2.77% 57437 6.10% 101111 4.02% 90195 4.00% -10643 -4.32% 30113 3.86% 19470 1.90% 41346 4.92%Note:Data Source:Orange cells denote PCTs where actual activity was greater than planned 85 Plan data - Vital Signs data submissions March 2008 and Vital Signs refreshes March 2009 / March 2010Blue cells denote PCTs where actual activity was less than planned -85 Actual data - monthly MARCOMM returns submitted to DH via Unify systemGreen cells denote PCTs where actual activity was greater than same period previous year 85Blue cells denote PCTs where actual activity was less than same period previous year -85

What has been happening to demand in 2010/11?• Referrals have gone up in 2/3 of PCTs• Trends in referrals and out patient activity are notalways correlated!• Almost universal shift from elective IPs to Day Cases• Only 5 PCTs have reduced total elective activity• Only 2 PCTs have reduced non elective activity• The North West has a sizeable gap between our “plans”and actual delivery

Some Important Principles• “Managing Demand” should mean meeting needs in the mosteffective, efficient and patient centred way… not denying access• Existing incentives (in particular PbR) encourage growth in activity–we need to test new approaches• Better ‘integration”• between sectors• between commissioners and providers• Between providers and patientsis key to a more effective management of demand• Reduction in demand needs to result in reductions in capacity andconsequent reductions in cost for both commissioners and providersrs

End of Life Care• Estimated that hospital admissions in the lastyear of life for adults cost the NHS £1.3 billion• By delivering improved recognition of palliativecare needs, as well as optimised provision ofhospital services outside hospital setting couldreduce hospital deaths by approx. 60,000 perannum by 2021.• Using the QIPP estimate of £3,000 per hospitaldeath translates to a potential reduction inhospital costs of £180 million per annum.

• NHS Operating Framework (England) 2011/12 –“the NHS should continue to ensureimplementation of the End of Life Care Strategy,working to offer patients the choice of where tobe cared for as they approach the end of life,and where to die, regardless of their condition”.Focus on % deaths at home.• NW quality vision – aim for a 10% reduction inhospital deaths through better EoLC planning;reducing emergency admissions in the lastmonth of life

How?• Locality registers• Six steps to success – programme for carehomes• GP practices – GSF• Routes to success – in end of life care –achieving quality in acute hospitals

ThankyouSusan SummersAssistant Director Quality Assurance and Self CareNHS North West SHASusan.summers@northwest.nhs.uk

INFLUENCING THE REFORMAGENDA: KEEPING END OF LIFECARE A PRIORITYJuly 2011SIMON CHAPMANDIRECTOR OF POLICY& PARLIAMENTARY AFFAIRSwww.dyingmatters.org

OMBUDSMAN• “Poor communication & thoughtless action• Discharge can be shambolic and ill-prepared• The NHS must close the gap between the promiseof care and compassion in its Constitution and theinjustice many older people experience• Inattention to the suffering of older people ischaracteristic of the stories in this report• Care should be shaped not just by their illness,but by the wider context of their lives andrelationships”www.dyingmatters.org

REFORM: getting from here...www.dyingmatters.org

...to here?• Patients at the centre• ClinicalCommissioning• Advisory senates• Greater choice &control• Integration &collaboration• Health & well-beingboards• Outcomes frameworks• Funding Review &Dilnotwww.dyingmatters.org

EDDY & MYRLE• EDDY• 86 years old• Lived in shelteredhousing for 5 years.Wants to stay there• In pain; breathless; inbed much of the time;not eating much;depressed• Doesn’t t want CPR orantiobiotics for a chestinfection• MYRLE• Eddy’s s daughter, livesnearby; visits daily• Helps Eddy on personalbudgets (health & socialcare)• Eddy is on theGP’s s end of liferegister. Quarterlymeeting in 7 weekstime.www.ncpc.org.uk

www.ncpc.org.uk

Policy priorities 11/12• Making end of life care a priority at everylevel• Supporting commissioners and providers• Strategic partnership with DH• Building community capacity• Focus on 24/7 care: “all hours” not “out of hours”• Developing end of life care intelligence• NEoLCIN and Funding Review• Conferences on dementia and heart failure

WHAT WILL WE BE DOING?• Equipping• A+E or A&E?: earlycommissioning actionsfor consortia• Key relationships andquestions: how toinfluence & drive changeat every level• Developing & applyingintelligencewww.dyingmatters.org

24/7• Manifesto call• In white paper• Funding Reviewrecommendation• 49% of surveyrespondentsconcerned about painrelief in their area• Conference;publicationwww.dyingmatters.org

HEALTH & SOCIAL CARE BILL• “Pause” aka “NHS Future Forum”• Strong commitments to Eolc• Over 180 amendments to Bill• New local commissioning remains• “Shadow commissioning” by central NCB• Monitor to promote integration and involve public• Operating Framework to be replaced by multi-yearministerial mandate• Health & wellbeing boards to have right to refer backcommissioning planswww.ncpc.org.uk

Palliative CareFunding Review• “Stunning inequities”• Range of PCT (exc. vol sector) spending on spc/death £168- £6213• 61% spend

Palliative Care Funding Review (2)• Looking at phases of illness• Stable• Deteriorating• Unstable• Dying• System refined within those categories by needand setting, and packages of care providedaccordinglywww.dyingmatters.org

GOVT RESPONSE• “We want to see integrated, responsive andhigh-quality health and care services for those atthe end of life. We will now consider the reviewteam’s s proposals in detail before consultingstakeholders on the way forward later thissummer. We will also consider how best toundertake substantial piloting, , as recommendedin the report, in order to gather information onhow best to deliver palliative care services.”• Hansard 3 July 2011www.dyingmatters.org

NICE• Draft Quality Standard: consulting until22/7• 20 statements• Can they be reduced to 15?• Status at present: non-mandatory. But....• Service specifications• Local contractingwww.dyingmatters.org

DILNOT PROPOSALS• Cap on care costs c £35-£50K50K• “Hotel” costs capped at £7-10K/year• Will enable insurance• Not compulsory• Supports Funding Review’s s proposal ofnon- means tested social care at EoLwww.dyingmatters.org

JOINING EVERYTHING UP• Patients at the centre• ClinicalCommissioning• Advisory senates• Greater choice &control• Integration &collaboration• Health & well-beingboards• Outcomes frameworks• Funding Review &Dilnotwww.dyingmatters.org

PEOPLE’S S NEEDS ARETHE SAME• True in 2010; truetoday:• More older people• More dementia andmultiple conditions• More people will dieeach year• Numbers of homedeaths below 20%

OPPORTUNITIES &CHALLENGES• Who are your local budget holders & decisionmakers at any given time?• Identifying & working with emergent consortia• How do you fit into local health & social care?• What needs can you help meet?• Working with new partners• Integrating care• New levers to build capacity in the communitywww.dyingmatters.org

LOOKING TO THE FUTURE• Build capacity in the community• Training and education• Equip leaders & champions• Campaign & mobilise for end of life care tobe a priority• What can we do together to makeend of life care a priority in yourarea?www.dyingmatters.org

www.dyingmatters.org

Caroline Flynn, Elaine Horgan and Christine Taylor

Living well and dying well

National Facts And FiguresThere is a major discrepancy between people’s preferences for where they should die and theirplace of death• 500,000 people die in England each year.•This will rise to around 530,000 by 2030•Most would prefer to die at home•Only around 18% do so with a further 17% in care homes•Acute hospitals accounting for 58% of all deaths•Around 4% in hospices•Only around one third of general public have discussed death and dying withanyone• 700,000 people have dementia and 1/3 live in a care home

End of Life Care Strategy 20084.39“GoodPCT’s working with local authorities will wish to commission services from carehomes which:• Residents approaching the end of life are on an end of life care register• Each resident is offered a care plan, which clearly identifies their tneeds andpreferences for care• Staff receive the training and support they need to provide end of life care• There is a appropriate access to GP, District nursing and specialist palliative careadvice”DOH, 2008, End of Life Care Strategy p95

Reduction ininappropriatehospitaladmissionsPatient achievingtheir wishes andpreferences at endof life of where theywant to dieKey Leversfor improved CareEquity andaccess to endof life care

Challenges for care homesdelivering end of life care• Leadership• Staff turnover• Culture of the care home• MDT working (sharing information)• Advance Care Planning; Starting the conversation with long termresidents• Recognition of residents in the last 12 months of life• Diagnosing dying

Do care homes have thesupport they need?A 2009 study into the provision of goodend of life care in care homesdemonstrated that delivery of good qualityend-of-life care in care homes requires aneffective balance of external support, andinternal resources.

more work is needed to enable integrationof nursing homes into the wider systems ofend of life care and to enablecollaboration across organizational,institutional and funding boundaries sothat patients receive a better quality of endof life care regardless of the care setting inwhich they are located. ‘Jane E Seymour, Arun Kumar andKatherine Froggatt (2009)

Why support care homes• Fits with the End of Life Care Strategy identifying the need fora cultural shift in attitude & behaviour across the health &social care workforce.• 10% reduction in inappropriate hospital deaths ( North WestHealthier Horizons 2008)• Provide stronger partnerships between the NHS and theindependent care sector• Address the key components of End of Life Care education tosupport care homes in providing end of life care i.e ACP,communication skills & LCP• Improving equity of quality end of life care for allirrespective of care setting

“ It should not be down to ’luck’ and wherewe live in the country as to how we die,we all know death happens and we shouldbe more prepared, human and caring”Comment posted on the Patient Opinionwebsite www.patientopinion.org.uk

End of Life Care Training Matrix

ConceptTo develop a low cost, consistent end of life care programme,available to all care homes. It will support the development ofnominated staff in residential and/or nursing homes tobecome End of Life Care Home Representatives (champions)implementing organisational change utilising the Route toSuccess for care homes.Allow areas supporting the programme to include localpolicies, guidance & literature to promote somestandardisation across settings.

The story so far….NetworkNumber ofcare homesNumber ofPCTsPCTs inagreementMCCN60076GMCCN651116CLEOLCN80066

QIPPQuality Innovation Productivity Prevention •Improve the resident and family experience of end of life care in acare home setting•Enhance care delivery within the care home at end of life•A A skilled workforce•A A low cost Network EOL programme providing a consistentapproach across PCT’s with a wide access to all care homes•Can support care homes who currently have high recordedadmissions to the acute sector for end of life care•Develop a care home representative to take responsibility for thefuture development of end of life care provision in their care homeh•Enhanced end of life care•Enhanced MDT working•Deliver choice at end of life•Wider awareness and implementation of End of life care•Development of PCT End of Life Care home representativeGroups•Address equity•Reduction in hospital admissions at end of life from Care homes•Reduction of isolated working

Local Recruitment• Local awareness raising session• Participation criteria agreement to be signed• Registration

Expectations of an End of LifeCare Home Representative• Regularly meet with other End of Life Care Home Representatives• Develop other learners in end of life care• Build resource files within the care home• Produce a portfolio to evidence the implementation of the programmethat could be shared with regulatory bodies (CQC), commissioners,social services• To be a link with the local End of Life Care Facilitator• Initiate change management within the home

Overview of the Six Steps toSuccess Programme• Induction workshop• Six Steps to Success workshops‣ Step 1 - Discussions as the end of life approaches‣ Step 2 - Assessment, care planning and review‣ Step 3 - Co-ordination ordination of care‣ Step 4 - Delivery of high quality care in care homes‣ Step 5 - Care in the last days of life‣ Step 6 - Care after death• Conclusion workshop• Supporting education: communication skills, Advance CarePlanning and Liverpool Care Pathway for the dying patient (LCP)• Continuation of care home forum

Celebration• On Completion of the Six Step to SuccessProgramme the End of Life Care Representative willbecome the Care Home End of Life Care‘Champion’• The Care Home Representative will receive acertificate of attendance• Care home will receive a dated certificate oncompletion of portfolio

Evaluation/SustainabilityEvaluationSustainability•Ongoing evaluation throughout thecourse•Care home forums continue on aregular basis•Pre and post course audits•Care homes set agenda•Audit of ACP/LCP•External speakers•National roll out of the Six Steps toSuccess Programme•Continuing access to education andsupport•National evaluation through theNational End of Life care Programme•Local area to decide how they willensure sustainability depending onresourcesEnd of life care home forum will be a valuable resource group to drive and trial newinitiatives in end of life care for the care home sector i.e. E-Learning

How will the resident &family/commissioner/care home know it hasworked• Residents receive their wishes and preferences at end of life• Family feel supported• Use of Liverpool Care pathway/Six Steps to Success programmedemonstrates quality care given• Fewer End Of Life Care complaints• Reduction in inappropriate hospital admissions• Staff are trained and competent to deliver the care• Equity and equal access to quality end of life care to all

ContactsElaine Horgan - End of Life Care, Care Home CoordinatorGreater Manchester and Cheshire Cancer NetworkElaine.horgan@manchester.nhs.uk0161 920 9723Caroline Flynn – End of Life Care Lead, Merseyside and Cheshire CancerNetworkCaroline.flynn@mccn.nhs.uk0151 201 4150Charlotte Pilkington - End of Life Care Home Service Improvement FacilitatorCumbria and Lancashire End of Life Care NetworkEmail: charlotte.pilkington@lsccn.nhs.ukTel: 01772 647058/647147Access the Six Steps to Success Programme for Care Homes at:Access the Six Steps to Success Programme for Care Homes at:http://www.endoflifecareforadults.nhs.uk/caresettings/carehomes/route-to-success-in-care-homes-package

National End of Life Care Strategy - Merseyside & Cheshire Cancer ...

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