Leeds Adult Palliative And End Of Life Care Strategy

EXECUTIVE SUMMARYKey principles:This strategy sets out our vision forpalliative and end of life care in Leeds,detailing seven key outcomes that we willdeliver over the next five years. It clarifieshow partners in the city will deliver the keyaim set out in the Leeds Health and CarePlan that:In delivering the outcomes set out above,end of life care services in Leeds will: “People will die well in their place ofchoice; carers and the bereaved will bewell supported.”OutcomesPeople in Leeds who need palliative and /orend of life care will: Involve those using our services in theirdevelopment and evaluation Be delivered in a variety of settings sothat people can use the service of theirchoice Be easy to access 24 hours a day, 7days a week 1. Be seen and treated as individuals whoare encouraged to make and shareadvance care plans and to be involved indecisions regarding their care2. Have their needs and conditionsrecognised quickly and be given fairaccess to services, regardless of theirbackground or characteristics3. Be supported to live well as longas possible, taking account of theirexpressed wishes and maximising theircomfort and wellbeing Be developed in line with patient need,including locations and timings ofservicesAn increase in the number of people withadvance care planning conversationsrecorded A reduction in the number of peopledying in hospital 6. Be assured that their family, carers, andthose close to them are well supportedduring and after their care, and thatthey are kept involved and informedthroughout 7. Be part of communities that talk aboutdeath and dying, and that are ready,willing and able to provide the supportneeded.8Encourage and empower service usersto be actively involved in planning theirown end of life care and support themto make choicesIn developing the strategy, we havereflected the move towards a populationhealth management approach, workingwith the public and health and careprofessionals to develop the followingpopulation outcomes for people needingpalliative and end of life care.People in Leeds who need palliative and /orend of life care will:In recent years we have achievedsignificant improvements in end of life careacross Leeds, addressing key strategicpriorities identified in 2014. These include: Enhanced hospital discharge services,care home support, bereavementservices and out of hours medicalsupport.But there is still more to do .The strategy takes account of the HealthNeeds Data Update – End of Life CareServices for Adults in Leeds 2019 andfeedback from the public, patients, healthand care providers, family carers and thebereaved.Have low, or no, waiting times and nounnecessary waiting 5. Have their care provided by people whoare well trained to do so and who haveaccess to the necessary resourcesBe accessible to all patient groups whocould benefit from them, working toidentify health inequalities and puttingin place measures to significantlyreduce these This strategy sets out the vision andpriorities that will help us meet nationalstandards and address local priorities forimproving end of life care for adults inLeeds over the next five years. It buildsupon and replaces the Leeds End of LifeCare Commissioning Strategy for Adults2014-19. 4. Receive care that is well-coordinatedMeet the current and projected needsof the local populationINTRODUCTION1. Be seen and treated as individuals whoare encouraged to make and shareadvance care plans and to be involvedin decisions regarding their care2. Have their needs and conditionsrecognised quickly and be given fairaccess to services regardless of theirbackground or characteristics3. Be supported to live well as longas possible, taking account of theirexpressed wishes and maximising theircomfort and wellbeing An increase in the number of peopledying in their preferred place of care Treat all service users and carers withdignity and respectIncreased investment in community andhospital based services Offer treatment and care that isevidence-based and consistent acrossservicesThe establishment of a managed clinicalnetwork, the Leeds Palliative CareNetwork (LPCN)5. Have their care provided by people whoare well trained to do so and who haveaccess to the necessary resources The formation of the Leeds Dying Matterspartnership and its annual citywidecampaign to raise awareness of deathand dying The publication of an annual survey ofbereaved carers6. Be assured that their family, carers, andthose close to them are well supportedduring and after their care, and thatthey are kept involved and informedthroughout 7-day palliative care services in hospitaland community settings Improved access to medicationsBe cost effective.4. Receive care that is well-coordinated7. Be part of communities that talk aboutdeath and dying, and that are ready,willing and able to provide the supportneeded.In the pages that follow, we outline how wewill achieve these outcomes.9

Demographic ContextBACKGROUNDStrategic ContextThere are approximately 6,850 deaths peryear in Leeds. Common causes of death foradults are cancer (27.1%), circulatory disease(26.7%) and respiratory disease (12.4%).By 2040 the number of annual deaths isprojected to rise by 25%, with the greatestrise in those over 85. In Leeds this will be upto an additional 1,700 people dying per year.The demand for palliative and end of life caremay rise by 40%, as those requiring carehave increasingly complex needs and requiresupport for longer. The main challenges willbe caring for those with cancer, dementia,multiple long term conditions and frailty.recognition of people with palliative andend of life care needs, individualised careestablishing realistic goals and preferences,holistic assessment, effective symptommanagement and support, and advancecare planning have the potential to improvepeople’s experience of care at the end of lifeand deliver more cost-effective, high-qualityservices.This strategy is informed by the frameworkprovided in the NHS long term plan(the Plan), which clearly emphasisesintegrated and responsive out-ofhospital care to support people in thecommunity, minimise disruption to theirlives and utilise hospital-based treatmentas effectively as possible. It stresses theneed for increased personalisation, givingall people more say about the care theyreceive, particularly towards the end oflife. It identifies tackling health inequalitiesas a central goal, highlighting the needsof people with a learning disability, peoplefrom Black, Asian and Minority Ethnic(BAME) backgrounds, those experiencinghomelessness, and people providing carefor loved ones, particularly young carersand those from vulnerable communities.Using data effectively and harnessing digitaltechnology are recognised as essentialmeans of achieving these strategic goals.The Plan emphasises the need for effectivecollaboration between organisations,including the formation of integrated caresystems and primary care networks, and theimportance of jointly designing services withthe people who need them, helping to ensurethat service users are at the heart of qualityimprovement and service development.Locally, we are able to use population healthmanagement intelligence to collectively designsolutions that improve patient and familyexperience. The ‘Leeds Way’ – our approachof “working with people instead of doingthings to them” – is key to the personalisedcare model at the heart of end of life care.This approach is also at the core of the LeedsHealth and Wellbeing Strategy 2016-2021,which describes an overarching ambition toimprove health and care in the city.1Staff are caring, considerate andsupportive People’s wishes are taken intoconsideration Information provided to people and theircarers or families is consistent People have privacy People are able to choose where to die.https://pubmed.ncbi.nlm.nih.gov/24637342/² nd-of-life-care-web-final.pdf4Reports on the development of these priorities are available here: s/frailty-what-matters/10In response, we developed the LeedsPalliative Care Network (LPCN), acollaborative partnership constituted6 througha formal Memorandum of Understandingand governed through clear terms ofreference, reporting to NHS Leeds ClinicalCommissioning Group (CCG) It was formed in2016, and has representation from across thehealth and care system. The purpose of theLPCN is to help provider organisations worktogether to plan and deliver care in the bestpossible way for patients, their families andcarers.The latest Leeds End of Life Care HealthNeeds Assessment (HNA)5 highlights thatwhen a person has an advance care planningconversation recorded and shared in theElectronic Palliative Care CoordinationSystem (EPaCCS), they are more likely to diein their place of choice than those who donot. There is, however, evidence of inequityof access to EPaCCS with people from someBAME groups, particularly black and mixedethnicities, people under 65 years of age,males, and those from some of the moredeprived wards having a lower proportionof recorded advance care planning or lowerachievement of preferred place of death.This reflects what people in Leeds have toldus matters most about end of life care duringrecent engagements4: One of the recommendations from the 201419 End of Life Care Strategy was to considera partnership forum that would increasecollaborative working and improve continuityof care and patient / family experience forpeople requiring palliative care and those atend of life. It was suggested that this could beachieved by forming a clinical network.Over the last 10 years, the percentage ofpeople dying in hospital has decreased from56% to 45.4%, and the percentage of thosedying at home, in a hospice or a care homehas increased. However people are still dyingin hospital when this was not their preferredplace of death.The Leeds Health and Care Plan explainshow some of the ambitions in the strategywill be achieved, and we have worked hardto ensure that the needs of people at theend of their life are included in the plan. Ourcollective aim is that “people will die wellin their place of choice; carers and thebereaved will be well supported.”Nationally, around half of all deaths occur inhospital, but for many people, this is theirleast preferred place of care. More andmore people are living with uncontrolledsymptoms that result in hospital admission,with one in three emergency admissionsbeing for people in the last year of life¹. Atany one time, nearly 30% of hospital patientsare in the last year of life², with hospitalcare in the last three months of life costingon average 4,500 per patient³. TimelyHow we’ve developed thisstrategyThe LPCN has been working alongside theCCG and Leeds City Council to refresh the2014-19 End of Life Care Strategy, takingaccount of the move towards deliveringpopulation level outcomes.To support the strategy development, theLPCN organised and facilitated two eventsin November 2018 that engaged more than60 people from 21 health and social careorganisations, including statutory and thirdsectors.The first event, the future of palliative andend of life care in Leeds , resulted in theagreement of key areas and themes that areessential to good care and the productionof a framework that has informed ongoingdiscussions.The percentage of people who have died withan EPaCCS record is increasing (54% as atend of June 2020), thanks to continued qualityimprovement work across the system. Wewill continue to work with partners to addressunequal access and the health inequalities thisresults in and help ensure that more peopleare able to die in their place of choice.56The second event, LPCN celebration andstrategy event, led to recognition of prioritiesfor future development.The full HNA document can be found at /12/11-Health-Needs-Assessment.pdfFurther information about the Leeds Palliative Care Network can be found here: 11

Our vision and underlyingprinciplesA strategy advisory group has beenestablished so that senior representativefrom all partner organisations can guide,inform and influence future strategicdevelopments. The group attended CCGpopulation health management sessionsduring the summer of 2019 to start to agreekey principles and the scope for the futurestrategy. Through consideration of the localframework and Ambitions for end of life care‘I’ statements, the group developed the firstiteration of a broad outcomes document.Vision:The vision for adult palliative and end of lifecare in Leeds is as follows:“People will die well in their place ofchoice, carers and the bereaved will bewell supported”(Leeds Health and Care Plan 2020)ScopeThe scope of this strategy includes adults (18 ) with advanced progressive life-limiting diseaseand /or who are dying (last phase of life). However, we acknowledge that the transition fromchildren’s to adult services is particularly important, and we will continue to build relationshipswith providers of end of life care for children and to develop seamless pathways and services.Although not directly in scope, other groups (such as people living with long term conditions,dementia and frailty), will also impact and be impacted by this strategy, particularly as we aimto increase advance care planning before people need end of life care.Key principles:This work was presented to Leeds Healthand Wellbeing Board in September 2019,who supported it and encouraged itsprogression. The outcome statements werefurther refined following feedback from theLeeds People’s Voices group, facilitated byHealthwatch Leeds. These statements framethe structure of the strategy to ensure weremain patient and family focused.End of life care services in Leeds will:Finally, it is important to recognise thatthis document has been developed duringa significantly challenging time for healthand social care resulting from the Covid-19pandemic. It is worthy of note that duringthis time, there has been even greatercollaboration, and it has highlighted areasthat we need to focus on in the future. It hasaccelerated some changes and will impacthow we provide services in future. This willbe reflected in annual action plans that resultfrom this strategy.12 Meet the current and projected needs ofthe local population Involve those using our services in theirdevelopment and evaluation Be delivered in a variety of settings sothat people can use the service of theirchoice Be easy to access 24 hours a day, 7 daysa week Be accessible to all patient groups whocould benefit from them, working toidentify health inequalities and putting inplace measures to significantly reducethese Have low, or no, waiting times and nounnecessary waiting Be developed in line with patient need,including locations and timings ofservices Encourage and empower service users tobe actively involved in planning their ownend of life care and support them to makechoices Treat all service users and carers withdignity and respect Offer treatment and care that is evidencebased and consistent across services Be cost effective.13

WHAT WE WANT TO ACHIEVE –7 Key OutcomesOUTCOME 1:People in Leeds who need palliative and /or endof life care will be seen and treated as individualswho are encouraged to make and share advancecare plans and to be involved in decisionsregarding their careWe have subsequently introduced a digitalversion of the national “recommendedsummary plan for emergency care andtreatment” (ReSPECT). This enables similarinformation to be shared, irrespective ofsomeone’s diagnosis or prognosis, so thatanyone at any time in their life can make theirwishes known. More than 16,000 peoplehave created a plan since its introduction inDecember 2018. The LPCN has supportedthe combination of EPaCCS and ReSPECTinto a single record called Planning Ahead,which includes a ‘what matters to me’section to enhance personalised careplanning.Where are we now?Working with people and providingpersonalised care that is guided by theirindividual goals, needs and preferences is acore principle of palliative and end of life carein Leeds. Central to this approach is havingsystems to support people to have honestwell-informed conversations about theirhealth, death, dying and bereavement; to saywhat matters to them, document this as anadvance care plan and share it with servicesproviding care, treatment and support.Leeds was one of the first cities in the UK toestablish an electronic palliative care coordination system (EPaCCS) over a decadeago. This enables the care preferences,treatment recommendations and otheradvance care plans of people approachingthe end of their life to be shared in casethey are too unwell to participate in decisionmaking in the future.On-going education and training has enabledthe workforce to offer and conduct theseimportant and sensitive conversationsin a supportive and person centred way.Specialist palliative care teams continue tocollaborate with health and care colleaguesacross the city to improve recognition ofpeople’s needs and support planning ahead.14This includes dedicated multi-disciplinaryteam meetings alongside quality improvementprogrammes, education and training withteams caring for people with heart failure andother cardiac disease, respiratory diseaseslike chronic obstructive pulmonary diseaseand lung fibrosis, neurological disorders suchas Parkinson’s disease and motor neuronediseases, renal and hepatic failure, cancer,life-threatening conditions causing acutehospital admission and frailty.advanced care plans in place.The development and implementation ofthe Planning Ahead template, with theincreasing focus on ‘what matters to me,’ isan opportunity to empower people to haveeven more say in what their care is like whilststrengthening our collaboration with partnersimplementing the broader personalised careapproach across Leeds.Emerging digital developments such Helm,the patient held digital record, may offerfurther opportunities to empower peopleto initiate and manage their advance careplans. On-going collaborations with digitalpartners will ensure we can make the most ofemerging technologies.This collaborative, personalised approachunderpins the steady increase in theproportion of adults who die in Leeds withdocumented advance care plans and positivefeedback in the bereaved carers surveys,with the majority of respondents replying thattheir loved one was cared for with dignity anddied in the right place.Through continued LPCN collaboration withfrailty, dementia, heart failure, respiratoryand other long-term conditions, and othercitywide work streams we can ensureindividualised palliative and end of life care isembedded as a core part of services.Moving forwardNot everyone in Leeds with palliative and endof life care needs is recognised, and thereis variation across the city in participationin advance care planning. Findings of anupcoming report into the use of EPaCCScarried out by the St Gemma’s AcademicUnit of Palliative care will guide furtherquality improvement activity, educationand training to ensure everyone has theopportunity to discuss, develop and shareadvance care plans. This will help to reducehealth inequalities for groups of patients whoare currently less likely to have recorded15

OUTCOME 2:People in Leeds who need palliative and /or endof life care will have their needs and conditionsrecognised quickly and be given fair accessto services, regardless of their background orcharacteristicsMatters campaign and held a citywidecommunity engagement event to guidethe early development of the LPCN. Wehave worked with Leeds City Counciland Healthwatch to conduct a city-widebereaved carers survey to better understandexperience of services.Where are we now?We are committed to ensuring that allpeople in Leeds are able to access the rightpalliative and end of life care at the righttime irrespective of who they are and wherethey live. In order to identify inequalities anddrive improvement, we need robust systemsto routinely collect and analyse data aboutaccess to, and experience of, care. Wehave collaborated with colleagues in publichealth, business intelligence, academiaand population health management tounderstand what the existing data can tellus, identify gaps in existing data models, andto develop our metrics suite to improve dataquality, include hospital alongside communitydata, and address diagnosis-related variationin advance care planning. However, there isstill more to do.We understand people from marginalisedcommunities may require additional targetedservices and support to ensure they areable to access care when and wherethey need it. We have started projects tounderstand what is required for peoplewith a learning disability, people in prison,people experiencing homelessness or thosefrom Gypsy and Traveller communities. Asapproximately 1 in 6 deaths are peoplewith a diagnosis of dementia, Leeds hasparticipated as one of three nationally fundedregional sites aiming to improve palliative andend of life care for people with this diagnosis.We recognise the needs of different peoplecan only be understood by working withthem. To this end we have collaboratedwith organisations representing differentcommunities across Leeds, supported theannual public health-led citywide DyingWe work collaboratively across the city topromote equitable access: all specialistpalliative care providers work to common16Further collaborative work is required withpartners across the city to enhance ourreporting and data, for instance to includehospital and community ReSPECT activityand develop genuinely person-centredmetrics concerning symptom and goalbased outcome measures. Our data setsand metrics reporting need to be extendedto ensure we can routinely measure knowninequalities and understand access bygroups that so far have not been analysed.The Health Needs Update makes specificrecommendations about the developmentof a broader suite of outcomes measures,further analysis of known inequalities andvariation with regards to EPaCCS work toexplore the views and experiences of peoplewith other protected characteristics such asLGBTQ people. Enhancing the bereavedcarers survey and extending its scope acrossLeeds to cover all places where people die isalso critical.citywide referral criteria; Leeds CommunityHealthcare NHS Trust have a transparentservice delivery framework for integratedpalliative and end of life care; hospice andhospital specialist palliative care te

need palliative and /or end of life care will be supported to live well as long as possible, taking account of their expressed wishes and maximising their comfort and wellbeing 18 "How we care for the dying is an indicator of how we care for all sick and vulnerable people" (Ambitions for Palliative and End of Life Care: A national framework for