Palliative Care and People with Learning Disabilities

1. Palliative Care and People with Learning Disabilities Linda S McEnhill Coordinator 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.’

3. Indicators of Learning Disability: CLDT West Sussex • History of being excluded/suspended from mainstream school • Case notes which refer to special school history • Previous 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 health • Reading and maths skills up to grades 3-6 but rarely beyond • Unable to acquire complex practical and vocational skills • Other family members diagnosed with ld

4. None LD Indicators: CLDT West Sussex • School exam results higher than expected, attended mainstream education without education support • Employment history showing person coping without expected levels of support • Suggestion of onset of problems post 18 • Variable amount of support needed • Holds a driving licence/drives a car • Completes complex purchases without help • Age approp dev until head injury or accident • Age 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 mins • Long 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 practice • To collate and record instances of poor practice • To more effectively influence practice and policy in both palliative care and learning disability services

8. What It Does • Linksindividuals into regional groupsfor regular meetings to provide information and support and a forum for collaboration • Provides 2 national study days each year and 2 newsletters • Advises on resources and developing projects ( to telephone or email enquirers)

9. Macmillan Network Information and Support Service • Funded by MCRF for 3 years • To map, collate and design information nationally about resources ( literature, services, training, personnel). Yr 2 website? • Enhance the email and telephone support service • Raise awareness of the issues re pal care & ld and educate and train to meet these • Service 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 illness • BBC 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 hearing • Higher levels of mental ill health ( 40-60% dual diagnosis 3x schizophrenia, 4x dementia) • 20x epilepsy • 3x respiratory deaths of ordinary population

11. Disease Profile • Main causes of death = cardiac and respiratory conditions and dementias • Information on death = poor • When cancer diagnosis then often late due to: a) significantly lower access to screening b) issues related to care setting c) ‘over attribution’ of learning disability especially by mainstream staff d) subjective quality of life decision making

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 cancer • Significantly higher incidence of gastro-intestinal cancer ( 58% cancer deaths 25% gen. population) H Pylori link- also lymphomaBILD 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 ( 10-30 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’ population • Increased 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)

15. People with LD are ‘baby boomers’ too!

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 decades • A group of women who are moving towards menopause and a consequent greater need to access screening services • People moving towards traditional palliative care age group • Last generations of those from long stay hospitals • Now is the time to get ready!

17. Challenges for Practice • Consent • Treatment • Symptom control • Placement issues Communication

18. Challenges for Practice • Consent Whose decision is it anyway? Mental Capacity Act How 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 staff • 59 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 Carers Majority 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 you • Therefore 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 al • Most recent version on Mencap website www.mencap.org.uk • See e-learning section of Help the Hospices Web site www.helpthehospices.org.uk

26. Challenges for Practice • Communication • Does 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 users • Lack 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 young • What 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 groups • Make links with local hospices/ community palliative care teams to develop policy, study days, link workers • Work with service users proactively on EOLC planning

32. Kathleen Ann Richards from ‘Caring For Kathleen’ By Margaret Fray ( BILD)

33. 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 0BL Phone 01223 573 173 Email:LindaMcEnhill@natnetpald.org.uk Or at St. Christopher’s Hospice 0208 768 4657 Email: L.McEnhill@stchristophers.org.uk