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Improving Care for Adults with Learning Disabilities in General Practice: A Comprehensive Guide

This guide focuses on the essential aspects of caring for adults with learning disabilities (LD) within general practice. It discusses the characteristics of individuals with LD, challenges they face, and the gaps in their healthcare provision. Key issues such as impaired communication, access to care, and the need for tailored health promotion strategies are highlighted. The document also outlines national initiatives aimed at improving the quality of care and offers practical tips for effective consultations. Tailored resources are provided for healthcare professionals and patients.

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Improving Care for Adults with Learning Disabilities in General Practice: A Comprehensive Guide

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  1. Learning disability Caring for adults with learning disabilities in General Practice Maggie Eisner, March2008 www.bradfordvts.co.uk

  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) • We’re thinking today about global LD, not specific disabilities like dyslexia and dyspraxia

  3. 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?

  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 • Down’s 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 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

  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 Down’s syndrome) • lack of uptake of generic health promotion (wt and BP measurement, mammography, Cx smears)

  8. 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

  9. 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

  10. 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

  11. 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

  12. Learning resources • GP curriculum document • References on curriculum document • Highly recommended • www.ncl.ac.uk/nnp/teaching/resources/learning • www.intellectualdisability.info

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