Learning disabilities

1. Learning disabilities VTS 19.10.2010

2. Aims of session 1. Learning disability entry in e-portfolio

3. Aim 2 2. Genetics entry in e-portfolio

4. Additional aims • 3. Learn about Cardiff health checks • 4. Case study to illustrate communication skills.

5. Scale of the problem • 210,000 with severe learning difficulties in England • 1.2 million mild or moderate

6. Major problems • Insufficient support for carers • Little choice or control over aspects of life • Unmet, substantial health care needs • Limited housing choice • Day services not tailored to individual needs • Limited employment opportunities

7. Definition Learning disability includes the presence of: • 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. Many also have physical and/or sensory impairments

8. Underlying conditions • Down’s syndrome • Fragile X • Rett’s syndrome • Williams syndrome • Angleman syndrome • Kabuki syndrome • Noonan syndrome

9. Underlyingconditions CerebralpalsyAutisticspectrumdisorderMiscellaneous

10. Impact on GP services • Patients with learning disabilities have 2.5 times as many associated medical problems as non-learning disabled control patients • The number of repeat prescription drugs prescribed by primary care are about three times those for non-learning disabled control patients • Learning disability is a major economic burden on the NHS, the local authority social services and on the social security system.

11. Co-morbidity • Increased incidence of psychiatric illness and behavioural disorders • 30% have epilepsy • 30% have visual problems and 30% hearing problems • Hypothyroidism and dementia can complicate Down’s syndrome • Continence and ambulation problems

12. Increased morbidity and mortality • Decreased life expectancy • Development of register (QoF/DES) allows regular structured health reviews with implementation of the resulting health action plan.

13. Mencap study • Avoid making assumptions about quality of life • Be clear on law about the capacity to consent • Explore the best way to communicate • Listen to parents and carers • Be suspicious about potentially important symptoms

14. Health Inequalities Formal Investigation • Preventable deaths for people with learning disabilities are 4 times higher than for rest of population • People with schizophrenia live 9years less on average • <20% of women with LD attend cervical screening compared with 81% of women overall • People with LD are 58 times more likely to die <50 than the general population • Diabetes 4-5 times more common in people with MH problems

15. Negative experiences • Loss of trust (medical staff and patients) • Inappropriate services provided • Patient not believed • Mis-diagnosis or non-diagnosis • Preconceptions/stereotyping • Patronising conversations (treated like children) • Not just what said, but how said (tone of voice) • Not treated as a person • Assumption that disabled = trouble • Overfocus on impairment rather than health condition • Repetition of repeat prescriptions, no clinical review etc

16. Treating the same • Examinations for new patients • Flexibility • Health checks • Medication reviews • Ask all patients for their access requirements • Treat the whole person (holistic) • Focus on treating health condition • Engagement with patients • Informing about medical results • Respect • Trust • Openness • Routine health checks • Routine screening

17. Treating Differently • Flexibility over timings for routine screening • Ask how best to help access (they are the expert) • Continuous support • Time to listen • Routine follow-up appointments • Consider any impairment (or medication-related) issues • Crisis or planning prevention meetings • Importance of getting to know well • emergency + telephone appointments • Prevention screening – flexibility, when well • Avoiding stereotyping • Help filling in forms

18. Learning Outcomes (RCGP) • Awareness of significant minority in a practice who may need no special services but who have reading, writing, comprehension difficulties • A few will have moderate severe and profound difficulties and will need to be identified, monitored and reviewed • Awareness of likely associated conditions and where to obtain specialist help and advice

19. Person-centred care • Importance of person-centred care including when involving carers • Respect autonomy, be aware of how communicating via carers may skew relationship • Awareness of residential settings/day centre • Optimise communication with consultation skills + communication aids • Importance of continuity • Be aware of capacity and consent and how to asses

20. Specific skills • Atypical presentations of psychiatric and physical illness • Use of additional enquiry, tests and careful examination if unable to verbalise • Be aware of concept of diagnostic overshadowing

21. Diagnostic overshadowing • Diagnostic overshadowing is when a person’s presenting symptoms are put down to their learning disability, rather than the doctor seeking another, potentially treatable cause.

22. Cardiff Health check • Other health checks are available. • 1 hour duration appointment • PN to check weight, height, urinalysis and completes checklist • GP for physical examination

23. Practice Nurse check • Patient details/carer circumstances • Consent • Communication • Weight, height, B.P., urinalysis • Immunisations and screening • Chronic illness and systems enquiry • Sexual health • Epilepsy

24. GP check • Hand over • General appearance • Cardiovascular, respiratory, abdominal • Dermatology, CNS, vision, hearing • Communication, mobility • Other investigations? • Summary • Action plan

25. Always focus on • Assessment of feeding, bowel and bladder function • Assessment of behavioural disturbance • Assessment of vision and hearing • Consider syndrome specific needs and checks

26. Mental Capacity CURB BADLIP (Chadwick and Hoghton 2010 bioethics memory aid for patients >18 in an emergency situation)

27. CURB • C Communicate – Can the person communicate their decision? • U Understand – Can they understand the information you are giving them? • R Retain – Can they retain the information given? • B Balance – Can they balance or use the information?

28. If no capacity Consider BADLIP to ascertain if a decision can be made after reviewing their best interests

29. BADLIP • B Best interest. If no capacity can you make a ‘best interest ‘ decision? • AD Advanced Decision – is there an advanced decision to refuse treatment? • L Lasting Power of Attorney appointed? • I Independent Mental Capacity Advocate. If no-one to consult about best interest appoint IMCA in an emergency • P Proxy. If unresolved conflicts consider local ethics committee or Court of Protection appointed deputy.

30. Case Study Consider the barriers to communication and the potential solutions in a young man with LD who has hypertension and obesity.

31. References and further reading • InnovAiT Vol 2 Issue 11 – article on childhood learning disabilities • A Step by Step Guide for GP Practices (annual health checks, RCGP, Hoghton) – should be a copy in each GP practice • DRC (2006) Equal Treatment: Closing the Gap – includes DVD on equal treatment • Assessing patient capacity – Hoghton + Chadwick BMJ 2010 ; 340:c2767

32. Resources • www.e-lfh.org.uk – free learning modules on learning disability including annual health checks • www.easyhealth.org.uk – downloadable information leaflets and books on LD • www.valuingpeople.gov.uk – DoH publications and support • www.mencap.org.uk