Learning disabilities VTS

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 PALSY AUTISTIC SPECTRUM DISORDER MISCELLANEOUS 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 – free learning modules on learning disability including annual health checkswww.e-lfh.org.uk – downloadable information leaflets and books on LDwww.easyhealth.org.uk – DoH publications and supportwww.valuingpeople.gov.uk