Presentation on theme: "Palliative Care and People with Learning Disabilities"— Presentation transcript:
1 Palliative Care and People with Learning Disabilities Linda S McEnhillCoordinator NNPCPLD and Macmillan Network Information and Support Service
2 What Is Learning Disability? Department of Health‘A reduced ability to understand new or complex information (impaired intelligence) and reduced ability to cope independently ( impaired social functioning) which began before adulthood and which has a lasting effect on development.’We will begin by trying to level the playing field for everyone by looking at some definitions of ld & of pc
3 Indicators of Learning Disability: CLDT West Sussex History of being excluded/suspended from mainstream schoolCase notes which refer to special school historyPrevious formal assessment of level of functioning ( psychology report)Clinical notes from various areas which present a picture of difficulties in a number of areas of adaptive behaviour- not explained by an alternative label e.g. mental healthReading and maths skills up to grades 3-6 but rarely beyondUnable to acquire complex practical and vocational skillsOther family members diagnosed with ld
4 None LD Indicators: CLDT West Sussex School exam results higher than expected, attended mainstream education without education supportEmployment history showing person coping without expected levels of supportSuggestion of onset of problems post 18Variable amount of support neededHolds a driving licence/drives a carCompletes complex purchases without helpAge approp dev until head injury or accidentAge approp dev until chronic mental health problems
5 What’s the Point and What’s the Difference? Because of improved paediatric healthcare there are more people with LD but often with more severe physical disabilities (+1% per yr).PWLD have much poorer physical health, but are living longer, and are consequently likely to experience conditions which require palliation.May have elderly family/carers who require pc (1/3 0f pwsld live with carers 70+ yrs) and will require psycho-social support. 18hrs:20 minsLong stay hospitals which previously filled the EOLC gap no longer exist and therefore these needs will need to be met in the community.
6 The National Network for Palliative Care of People with Learning Disabilities
7 Why a Network? To overcome individual practitioner isolation To link and replicate good practiceTo collate and record instances of poor practiceTo more effectively influence practice and policy in both palliative care and learning disability services
8 What It DoesLinks individuals into regional groups for regular meetings to provide information and support and a forum for collaborationProvides 2 national study days each year and 2 newslettersAdvises on resources and developing projects ( to telephone or enquirers)
9 Macmillan Network Information and Support Service Funded by MCRF for 3 yearsTo map, collate and design information nationally about resources ( literature, services, training, personnel). Yr 2 website?Enhance the and telephone support serviceRaise awareness of the issues re pal care & ld and educate and train to meet theseService user involvement
10 Setting the context: Healthcare of PWLD Generally Higher healthcare needs but less access to healthcare services.DRC reports that pwld are 4x more likely to die of a treatable illnessBBC News Site reports a recent research study which found that pwld are 58x more likely to die before age 50yrs ( Mencap ‘Death by indifference’ 2007)Likely, on average, to have 5 undiagnosed conditions at any given time esp. uti’s, sight, and hearingHigher levels of mental ill health ( 40-60% dual diagnosis 3x schizophrenia, 4x dementia)20x epilepsy3x respiratory deaths of ordinary population
11 Disease ProfileMain causes of death = cardiac and respiratory conditions and dementiasInformation on death = poorWhen cancer diagnosis then often late due to:a) significantly lower access to screeningb) issues related to care settingc) ‘over attribution’ of learning disabilityespecially by mainstream staffd) subjective quality of life decision makingin some parts of the country there is such a lack of knowledge that we don't even know how many pld there are in the population and it can only be estimated from other population studies. In Strathclyde it was not recorded whether a person had a ld or consequently the causes from which they died. The new centre for LD will seek to correct this.
12 Cancer & People With Learning Disabilities Recent DOH study suggests:Lower incidence of cancer (13.6%:26%)*16%Lower incidence of bronchus, prostate and breast cancerSignificantly higher incidence of gastro-intestinal cancer ( 58% cancer deaths 25% gen. population) H Pylori link- also lymphoma BILD 2001
13 Cancer & People With Downs Syndrome Women with downs syndrome would appear to be less vulnerable to breast cancer (? Genetic protection from extra chromosome?)People with downs syndrome have a greatly increased risk of childhood leukaemia ( times more likely).
14 Dementia People with ld are 4x more likely to get dementia Downs syndrome population particular issues including premature ageing, 6 times as likely to die as ‘ordinary’ populationIncreased mortality: 80% will now live in excess of 40yrs but 50% of these will have Downs related dementia-( includes epilepsy, sensory problems and muscle spasms)
16 That means!A large ‘bulge’ of people with Down’s syndrome who are beginning to develop dementia and will continue to do so for decadesA group of women who are moving towards menopause and a consequent greater need to access screening servicesPeople moving towards traditional palliative care age groupLast generations of those from long stay hospitalsNow is the time to get ready!
17 Challenges for Practice ConsentTreatmentSymptom controlPlacement issuesCommunication
18 Challenges for Practice ConsentWhose decision is it anyway?Mental Capacity ActHow do we ensure ‘informed’ consent?
19 Hot Issues for Palliative Care: Consent Whilst the MCA makes the distinction between competent decisions and competent adults clear many pwld have never been ‘considered’ competent in practice. Therefore the fact that there is a legally binding process to be followed could be a benefit for many pwld – making life ‘safer’ for them than it is for them currently.But will practitioners be skilled enough to enable pwld to demonstrate their competence?
20 Hot issues for palliative care: assessment of capacity Many tools with which we assess ‘clarity’ (therefore likely to be used in decisions about capacity) don’t work for people with learning disabilities e.g. MMSE? On what basis will you assess capacity in a person with a learning disability? How will you be sure that you are assessing ‘lack of capacity’ as opposed to lack of the requisite communication skills? Do you have ‘best interest’ processes
21 Hot issues for palliative care: Consent: Are we clear about what constitutes ‘best interests’ for PWLD?Greater difficulties in the acute setting due to shortage of time and less highly trained staff59 yr old woman with a primary breast cancer refused surgery on the basis that she was ‘scared of operations’But later asked ‘This lump in my breast is growing it wont kill me will it?’
22 Challenges for Practice Treatment- ‘equity’ of treatment hindered by.Assumptions about lifestyle.Assumptions about ability to withstand treatment.Subjective ‘quality of life decisions’. ( Influence of eugenics).Parents concern about quality of care when they can no longer physically care.
23 Caring for the CarersMajority of carers elderly and have their own health needs (PMLD 18 hrs:20mins.)
24 Challenges for Practice Symptom control‘No sense, no pain’Patient may not tell you but may show youTherefore importance of base line assessments. ( DisDAT)
25 DisDAT See Journal of Intellectual Disability Research, 2006 ‘Understanding Distress in people with severe communication difficulties: piloting and assessing DisDAT’Regnard C et alMost recent version on Mencap websiteSee e-learning section of Help the Hospices Web site
26 Challenges for Practice CommunicationDoes the person use verbal language?Does the person understand verbal language?Is the person a ‘ concrete’ or ‘abstract ‘ thinker?
27 ‘Its very difficult having sickness & diarrhoea together- because you don’t know which one to do first!The doctors call this a ‘side effect’ but [it doesn’t just affect your sides] …it affects your whole body!’Spoonface Steinberg (BBC)
29 Challenges for Practice Placement Issues:Registration Issues ( not unsurpassable but difficult for grass roots staff)Lack of knowledge of resources & rights ( GP is key).Conflicting demands of other service usersLack of confidence of LD staff in challenging primary and secondary providers of palliative care
30 Picking up the pieces: nursing homes Very often people with ld are unable to stay in their own ‘homes’ and are admitted to nursing homes at the end of their lives; even when they are relatively youngWhat needs to be adapted in terms of practice and culture for nursing homes to effectively meet EOLC needs of people with LD? What partnerships need to be developed?
31 What can you do?Join with other practitioners in local and national groupsMake links with local hospices/ community palliative care teams to develop policy, study days, link workersWork with service users proactively on EOLC planning
32 Kathleen Ann Richards from ‘Caring For Kathleen’ By Margaret Fray ( BILD)
33 ‘Statistics are ‘people with the tears removed!’ The Palliative Care of People with Learning Disabilities: 2 Things to Remember‘Statistics are ‘people with the tears removed!’‘The way that we practice healthcare is the means by which we demonstrate the value we place on people’s lives.’ (J. Brookes 2000
34 How to Find Out More Contact: Linda McEnhill Chair, NNPCPLD & MNISS PO Box 522, Cambridge CB1 0BLPhoneOr at St. Christopher’s Hospice
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