Learning disabilities

VTS 19.10.2010

Aims of session

1. Learning disability entry in e-portfolio

Aim 2

2. Genetics entry in e-portfolio

Additional aims

• 3. Learn about Cardiff health checks

• 4. Case study to illustrate communication skills.

Scale of the problem

• 210,000 with severe learning difficulties in England

• 1.2 million mild or moderate

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

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

Underlying conditions

• Down’s syndrome

• Fragile X

• Rett’s syndrome

• Williams syndrome

• Angleman syndrome

• Kabuki syndrome

• Noonan syndrome

CEREBRAL PALSYAUTISTIC SPECTRUM DISORDERMISCELLANEOUS

Underlying conditions

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.

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

• 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.

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

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

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

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

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

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

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

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

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.

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

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

GP check

• Hand over

• General appearance

• Cardiovascular, respiratory, abdominal

• Dermatology, CNS, vision, hearing

• Communication, mobility

• Other investigations?

• Summary

• Action plan

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

Mental Capacity

CURB

BADLIP

(Chadwick and Hoghton 2010 bioethics memory aid for patients >18 in an emergency situation)

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?

If no capacity

Consider BADLIP to ascertain if a decision can be made after reviewing their best interests

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.

Case Study

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

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

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