1. Learning disability Caring for adults with learning disabilities in General Practice Maggie Eisner, January 2012

2. Who are we talking about? People with significantly reduced ability to understand new and complex information, to learn new skills (impaired intelligence) with a reduced ability to cope independently (impaired social functioning), starting before adulthood with a lasting effect on development IQ<70 –mild (50 - 70) –moderate (35 - 50) –severe (20 - 35) –profound (<20) Were thinking today about global LD, not specific disabilities like dyslexia and dyspraxia

3. Your experience of LD - think about and discuss Patients youve known with LD Anyone with LD in your own family? What difficulties does their care cause for –Health professionals –Carers –The person with LD?

4. Lives of adults with LD Live with their families, or in supported accommodation or in Care Homes A few are employed Some go to Day Centres 9 - 5 Some of those living at home have Respite Care A few are employed, but most are on Incapacity Benefit plus DLA

5. Causes of LD + approx incidence per GP list of 2000 Downs syndrome: 2 Other chromosomal, e g fragile X: 1 Autistic spectrum disorders: 1 Cerebral palsy: 1 Other: 3

6. Associated health problems ( 2.5x as many co-morbidities as other patients) Psychiatric and behavioural problems v common Vulnerable to abuse by carers and others 30% have epilepsy 30% have visual problems 30% have hearing problems Many Downs pts develop dementia in middle age Many Downs patients become hypothyroid Continence problems very common Mobility problems very common Obesity common Most cant take responsibility for own health or read instructions Reduced life expectancy

7. Main gaps in health care for people with LD? untreated but treatable conditions (from ear wax to breast lumps) failure to address known health needs (e g thyroid screening for people with Downs syndrome) lack of uptake of generic health promotion (wt and BP measurement, mammography, Cx smears)

9. Why do they get inferior health care? Access problems Communication in consultation Autonomy, role of carers, capacity, consent Late and atypical presentation Diagnostic overshadowing (symptoms wrongly assumed to be related to LD condition) Communication with other agencies Prejudice Health professionals lack of awareness and/or knowledge

10. National initiatives to improve care White Paper Valuing People 2001 – not only health service, big ambitious plan for all aspects of learning disability QOF target - learning disabilities register Local QOF target – annual health review for everyone with LD, and each one to have a Health Action Plan –e g medication review, checks of sight and hearing, flu vacc, review of assoc med conditions Disability Rights Commission report Equal treatment – closing the gap 2006 - recommendations for primary health care for people with mental illness and with LD Mental Capacity Act - Lasting Power of Attorney arrangements for people with LD who lack capacity

11. Tips for effective consultations with people with LD Consider offering 1st appointment of day (or session) Double consultation time Start by checking how much they can understand and finding out best way to communicate Speak to patient before speaking to carer Explain the process of the consultation Try open questions, turning round or rephrasing question; use language they understand, or pictures Get supporting info from carer Check pt has understood Care when talking about time - refer to events they might understand Dont assume they can make the usual connections between illness and other events Continuity of care particularly important Be aware of your non verbal communication!

12. Helpful resources for you and patients Community nursing team for people with LD Psychiatrists specialising in LD Adult Protection Unit (re concern about abuse) Social Services dept Voluntary groups e g Downs syndrome association, MENCAP Carer support groups Written material from MENCAP, patient.co.uk, etc

13. Learning resources GP curriculum document References on curriculum document Highly recommended –www.ncl.ac.uk/nnp/teaching/resources/lear ningwww.ncl.ac.uk/nnp/teaching/resources/lear ning –www.intellectualdisability.infowww.intellectualdisability.info