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Learning disability. Caring for adults with learning disabilities in General Practice Maggie Eisner, March 2008 www.bradfordvts.co.uk. Who are we talking about?.
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Learning disability Caring for adults with learning disabilities in General Practice Maggie Eisner, March2008 www.bradfordvts.co.uk
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) • We’re thinking today about global LD, not specific disabilities like dyslexia and dyspraxia
Your experience of LD - think about and discuss • Patients you’ve known with LD • Anyone with LD in your own family? • What difficulties does their care cause for • Health professionals • Carers • The person with LD?
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
Causes of LD+ approx incidence per GP list of 2000 • Down’s syndrome: 2 • Other chromosomal, e g fragile X: 1 • Autistic spectrum disorders: 1 • Cerebral palsy: 1 • Other: 3
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 Down’s pts develop dementia in middle age • Many Down’s patients become hypothyroid • Continence problems very common • Mobility problems very common • Obesity common • Most can’t take responsibility for own health or read instructions • Reduced life expectancy
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 Down’s syndrome) • lack of uptake of generic health promotion (wt and BP measurement, mammography, Cx smears)
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
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
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 • Don’t assume they can make the usual connections between illness and other events • Continuity of care particularly important
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 Down’s syndrome association • Carer support groups
Learning resources • GP curriculum document • References on curriculum document • Highly recommended • www.ncl.ac.uk/nnp/teaching/resources/learning • www.intellectualdisability.info