Meeting the health needs of people with learning disabilities - AIMS

1. Meeting the health needs of people with learning disabilities - AIMS To have the opportunity to meet a person with a learning disability and gain insight into her life To develop a better understanding of the needs of a person with a learning disability when they go into hospital or attend a health setting environment

2. Aims (cont) Increased awareness of alternative & augmentative communication systems that help people with a learning disability Become familiar with contemporary approaches to working with people with learning disabilities (Valuing People White Paper 2001, Valuing People Now 2009).

3. In the U.K this means: A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence) with A reduced ability to cope independently(impaired social functioning) Which started before adulthood, with a lasting effect on development DoH 2001:14) There are many different types of learning disability. They can be mild, moderate or severe. Some people with a mild learning disability do not need a lot of support in their lives. What is a Learning Disability?

4. There are approx 230,000 – 350,000 people with severe learning disabilities & 580,000 – 1.7 million people with mild learning disabilities. 200 babies are born with a learning disability every week 9 out of 10 people with a learning disability get bullied There are more than 29,000 people with a severe orprofound learning disability who live at home withcarers aged over 70. Www.Mencap.Org.uk Prevalence

5. Health Challenges Research has shown that people with learning disabilities have increased physical and psychological health needs but do not access mainstream services (Thompson & Pickering 2001). Evidence shows that people & their carers are often dissatisfied with the health service provided. To date, people have struggled to access preventative measures such as screening.

6. Life expectancy is lower than the general population, but catching up People with learning disabilities are more likely to experience: mental illness chronic health problems epilepsy physical & sensory disabilities poor oral health Health Challenges

7. inadequate diagnosis and treatment of stroke, heart disease, chronic respiratory disease,hypothyroidism, osteoporosis & cancer Obesity and associated health problems There is an above average death rate among younger people with LD There are many inconsistencies in the provision of Primary care and hospital provision Health Challenges

8. Health Challenges • When people with a LD approached health care providers for assessment or treatment they found it difficult to access the help they needed. • Health outcomes fall short when compared with outcomes of non-disabled people

9. Over-dependence on the use of psychotropic drugs for the management of challenging behaviour Doctors & care staff fail to recognise potential health complications of many of the conditions that cause LD Few people with LD access health screening services with uptake for breast & cervical screening being especially poor Health Challenges

10. Solutions • Mencap (2004) in their report ‘Treat me Right’ are calling for the following improvements: • More training for health staff • Making visits to the doctors or hospital easier • Longer appointments & more time • Make information more accessible

11. Solutions • The doctor looks at you and speaks slowly • Use Makaton signs • Call us by our names not numbers • Have some more interesting magazines in the waiting room

12. Solutions • Ensure that people have annual checks • Access to health screening • Make sure a person’s records shows they have a learning disability • Reduce health inequalities/poor access

13. challenge discrimination & exclusive practices Introduce Health Facilitators – sometimes a CLDN or an experienced RNLD. All people with an LD to be registered with a GP All people to have a Health Action Plan Solutions

14. How can People First and Advocacy organisations help? Arrange for members to come and talk to people Put leaflets into accessible format

15. How can People First and Advocacy organisations help? Find out the views of our members on specific issues Give advise when you are introducing new leaflets or procedures

16. Alternative & augmentative communication systems Everybody communicates -Using speech is not the only way There are Alternative and Augmentative forms of communication People with no speech communicate through: Sign language Body language Eye contact Touch – if appropriate Tone of voice Intensive interaction

17. Other systems- • Sign language – ‘signalong’, BSL, • Blissymbols, PECS, Objects of Reference, Facilitated communication, • Total communication –considering the internal & external world of the client and using a range of approaches • Use of computer-assisted technology

18. Communication Passports • Personal Communication Passports  are a practical and person-centred way of supporting people who cannot easily speak for themselves. Passports aim to: • present the person positively as an individual, not as a set of 'problems' or disabilities. • provide a place for the person's own views and preferences to be recorded and drawn to the attention of others.

19. . Communication Passports • reflect  a 'flavour' of the person's unique character • describe the person's most effective means of communication and how others can best communicate with and support the person. • draw together information from past and present, and from different contexts, to help staff and conversation partners understand the person, and have successful interactions

20. Samples of communication passports

21. Valuing People (2001) • What is the Valuing People White Paper about? • The 4 themes of ‘Valuing People’: • RIGHTS • INDEPENDENCE • CHOICE • INCLUSION

22. RIGHTS • ‘People with a Learning Disability have the right to a decent education, to grow up to vote, to marry & to have a family & to express their opinions with help & support to do so where necessary’ (DH 2001:23) • Legal & civil rights • The Disability & Discrimination Act (2005) • The Human Rights Act ( 1998) • Equalities Act (2010)

23. Rights we have Right to vote Right to paid work Right to have children, get married Right to say no Right to be assertive The less people can speak up for themselves the more their rights are refused We have the same rights as everyone else

24. INDEPENDENCE • Need to believe that people with learning disabilities can move on & be independent • Many people are actively denied opportunities to be independent • The starting premise should be one of independence rather than dependence • Support is necessary. In this context independence does not mean relinquishing responsibility or people doing everything unaided

25. CHOICE • People with learning disabilities can speak up for themselves. They want a say in making important decisions & choices in every aspect of their lives • They want opportunities to self advocate & make a contribution to their local community • Making choices means working through the consequences of decision-making & allowing people to learn from and make mistakes • With the right support people can make decisions & express their preferences about their day-to-day lives

26. Choices I want I want to choose my ownclothes I want to choose where I go I want to choose where I live and who I live with

27. INCLUSION • Allowing people with learning disabilities to do ordinary things • Inclusive practice needs to develop in such a way that people feel part of & involved in their community • Their presence & visibility needs to be highlighted, accepted & valued at all levels for inclusion to be a reality • Offer some examples -

28. Is Valuing People making a difference to peoples’ lives – NO! • Many people still do not have their rights acknowledged, especially those from ethnic minorities & those with high support needs • Family carers are still not getting the support or services they need • There is not enough money being put into services. Some of the money goes elsewhere • Health services need to change so that they meet the needs of ALL people with learning disabilities and their families

29. Is Valuing People making a difference to peoples’ lives – NO! • Many people are still poor and therefore disadvantaged – they are socially excluded, have poor health & do not have a job • Crimes against people with learning disabilities are not taken as seriously as crimes against other people • Still not enough staff working in learning disability services • Information needs to be more accessible and understandable. There needs to be more training in the different ways that people communicate

30. Is Valuing People making a difference to peoples’ lives – NO! • Advocacy support needs to be available to ALL people so that they can have their rights, choice & independence & be included in their communities • Many people still do not have control over their lives – where they live, who they live with or who supports them • Transport is often inaccessible or too expensive. This makes it hard to be part of their community

31. Is Valuing People making a difference to peoples’ lives –YES! • More people are making choices, taking control & getting help to plan • More people are working in Person Centred ways • People with learning disabilities & their families are being heard at local, regional, national level & Government level • Information & meetings are becoming more accessible

32. Is Valuing People making a difference to peoples’ lives –YES! • Research is being undertaken with people with learning disabilities into how Valuing People is making a difference • Money has been given to advocacy groups & the Learning Disability helpline is helping many people • A ‘Valuing people’ support team is making sure that the principles of the White paper are being implemented • The National Care Standards Commission have set up a Learning Disability group that includes people with learning disabilities

33. Valuing People Now (2009) • States what the priorities are for the next 3 years. • It is about adults with learning disability including transition – when children become adults. • It says what should be done so that Valuing People happens for everyone.

34. Valuing People Now (2009) The priorities are: • People having more choice & control over their lives & services – called ‘personalisation.’ • What people do in the days and evenings – including getting a paid job & easier access to college courses. • People being healthy and getting a good service from the NHS. • People having more choices about where they live.

35. Advocacy & rights Partnership with families Including everyone – people with PMLD, from ethnic minorities, people with LD who break the law & people with additional mental health needs People as local citizens – combating crime, improving transport & increasing opportunities for personal relationships The staff that support people – including people working in mainstream services (that also means staff working in hospitals & other health care settings) Other important bits

36. And Finally Remember Nothing about us without us

37. References & additional reading • Carpenter D, Turnbull J & Kay A. (1999) Mental Health & Learning Disability, London, Emap Healthcare Ltd • Department of Health (1996) Continuing The Commitment. The Report of the Learning Disability Nursing Project, London, DoH • Department of Health (2001) Valuing People. A New Strategy for Learning Disability for the 21st Century,London, DoH • Michael J. (2008) Healthcare for all. Report of the independent inquiry into access to healthcare for people with learning disabilities, London, DH • Gates B. (ED)(2007) Learning Disabilities. Towards Inclusion, London, Churchill Livingstone.

38. Cont’d • Grant G., Goward P., Richardson M. & Ramcharan P. (2005) Learning Disability. A Life Cycle Approach to Valuing People, Maidenhead, Open University Press • Kilbane J. & Thompson J. (2004) Never ceasing our exploration: understanding person centred planning, Learning Disability Practice 7, (3), 28-31 • Kilbane J. (2004) ‘What’ & ‘How’: understanding professional involvement in person centred planning styles and approaches, Learning Disability Practice 7, (4), 16-20 • Markwick A. & Parrish A. (2003) Learning Disabilities. Themes & Perspectives, London, Butterworth Heinemann

39. Cont’d • Priest H. & Gibbs M. (2004) Mental Health Care for people with learning disabilities, London, Churchill Livingstone • Sanderson H., Kennedy J., Ritchie P. & Goodwin G. (1997) People, Plans & Possibilities - exploring Person Centred Planning, Edinburgh JRF • Thompson J. & Pickering S. (Eds)(2003) Meeting the health needs of people who have a learning disability, London, Bailliere Tindall • Thompson J. (2004) Person centred planning & professional workshops, Learning Disability Practice 7, (1), 12-13

40. Cont’d • Thompson J. & Cobb J. (2004) Person centred health action planning, Learning Disability Practice 7, (5), 12-15 • Turnbull J. (Ed)(2004) Learning Disability Nursing, Oxford, Blackwell Publishing. Websites that you should access for further information http://www.valuingpeoplenow.dh.gov.uk/ http://www.mencap.org.uk/ http://www.mencap.org.uk/document.asp?id=284 http://www.library.nhs.uk/learningdisabilities/ViewResource.aspx?resID=291301 http://www.thecbf.org.uk/

41. Useful Websites • www.paradigm-uk.org • www.Valuingpeople.gov.uk • www.nas.org.uk - National Autistic Society • www.fragilex.org - Fragile X website • www.ndss.org - National Down Syndrome Society • www.learningdisabilities.org.uk/html/content/pcp_communication.pdf -a useful website addressing communication passports