Learning disabilityLearning disability

Caring for adults with learning disabilities in General Practice

Maggie Eisner, January 2012

Who are we talking about?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 Your experience of LD - think about and discussabout 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 LDLives 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 LDCauses of LD+ approx incidence per GP list of 2000+ 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 Associated health problems ((2.5x as many co-morbidities as other patients)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 Main gaps in health care for people with LD?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 Why do they get inferior health care?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 National initiatives to improve carecare

• 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 Tips for effective consultations with people with LDwith 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• Be aware of your non verbal communication!

Helpful resources for you and Helpful resources for you and patientspatients

• 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,

MENCAP• Carer support groups• Written material from MENCAP, patient.co.uk, etc

Learning resourcesLearning resources

• GP curriculum document

• References on curriculum document

• Highly recommended – www.ncl.ac.uk/nnp/teaching/resources/lear

ning– www.intellectualdisability.info