1. Multi-professional training for primary care staff Learning Disability Health Check Awareness Session DES 2008/09

2. Aims: To raise awareness of health checks for people with a learning disability. Objectives: 1.To demonstrate an understanding of and identification of people with a learning disability. 2.To gain an understanding of the health check template in relation to meeting the health needs of people with learning disabilities. 3.To gain an understanding of health actions plans and health facilitation. 4.To explore ways in which to increase the effectiveness of the health check appointments.

3. The Department of Health defines a Learning Disability as including the Presence of: A significantly reduced ability to understand new or complex information, or 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. What is a Learning Disability?

4. Causes Prenatal –chromosome, genetics, toxins Perinatal – birth complications, infections Post natal – infections or trauma

5. World Health Organisation (WHO, 1992) ICD-10 Mild – IQ between 50 and 70 Moderate IQ – 55- 69 Severe and Profound Learning Disability IQ – below - 55

6. Learning Disability Mild Learning Disability- –Able to hold a conversation, –Independent in social care, –Basic or limited reading and writing skills –Able to maintain social relationships and employment. For this group primary care teams will provide much of their health care with little need for intervention from specialist teams Moderate learning disability - Enjoy a level of independence requiring additional support in some aspects of life.

7. Learning Disability Severe or profound learning disability- Very limited or specialised communication skills Additional physical and mobility problems. Require a greater level of support in most or all aspects of life including identifying health- related problems.

8. What a learning disability is NOT Problems with reading, writing or numeracy only. Emotional difficulties that may sufficiently have disrupted schooling, influencing achievement. Conditions like Attention Deficit Hyperactivity Disorder (A.D.H.D.) or hyperactive disorder. Asperger’s syndrome and some individuals with Autism. –However you can have a learning difficulty as well as a learning disability.

9. Defining Learning Disability There is no true or false answer –Someone may wrongly present as having a learning disability. –Some conditions or disabilities may affect or mask the diagnosis of a learning disability, these include: Physical disability e.g. cerebral palsy Mental Health – this can effect adaptive functioning Sensory disability e.g. hearing difficulties Challenging behaviour – e.g. ADHD Epilepsy e.g. drugs impairing intellectual functioning Personality disorder

10. Prevalence of Learning Disability National Prevalence estimated at 2-3 % Severe & profound 210,000 –65,000 children –120,000 adults of working age –25,000 older people Mild to moderate 25 per 1000 population (1.2 million) Per GP practice of 2000 patients – average of 40 pwld

11. History How might someone with a learning disability’s history affect their current health?

12. Health Facilitator Health Facilitation means ‘making it easy for someone to have good health’. Health Facilitation is part of everyone's role. Strategic Health Facilitator, Specialist Health Facilitator, Individual Health Facilitator

13. Joint working is required between the different levels of health facilitators Strategic Facilitator Specialist Facilitator Individual Facilitator Primary, secondary &; Learning Disability Health Professionals; Parent, friend, key worker Lead Health Facilitator Varying levels of support to individual

14. Health Facilitation Role Support person to understand about HAP’s. Support person to improve/ maintain good health. Help identify and record health targets. Support person to access health services. Support person to identify health education needs. Support person to review HAP. Support person to raise concerns.

15. Health Action Plan Lists Actions Needed Identifies support needed Provides links to a range of services Educates and informs Belongs to the person Person Centred Coordinates Services Influences services Accessible Identifies health needs Involves Primary Care

16. Identify Health Facilitator Check Understanding Identify Health Needs Identify actions to Improve/ Maintain health Record Actions/ Complete health file Link to other agencies/ services Review Actions Attend Training Develop Accessible plan Primary Care Health Check

17. Your patient has a learning Disability…What can you expect regarding Health issues? More likely….Less Likely……

18. Health Issues -More likely to: Die early Die from Breathing problems Have heart problems Be overweight, and eat badly Have certain cancers Have epilepsy Have Autism Be mentally ill

19. Health Issues- More likely to: Have dementia Be given Psychotropic drugs Have a Physical Disability Be deaf or blind Communication Problems Have Thyroid dysfunction Have Dental problems Be discharged quickly

20. Health Issues- Less likely to: Have a Health Check Be screened for cancer Use surgical hospital services Have sight tested Have hearing tested Receive pain relief Get Health Promotion advice Be included in consultations/ patient forums

21. Special Health Needs of People with Learning Disabilities 2.5x more likely to have a physical condition that warrants medical intervention lack of early intervention/detection Great difficulty & barriers in accessing all aspects of Healthcare Health outcomes fall short

22. Syndromes Down’s syndrome- –Hypothyroidism –Visual & hearing impairment –Reoccurring respiratory tract infections –Sleep apnoea –Obesity –Skin disorders –Dementia –Depression –Congenital heart disease –Low blood pressure and higher MCV

23. Prader-Willi Syndrome –Obesity –Problem behaviours –Pain threshold –Depressive episodes with psychotic symptoms Fragile X Syndrome –Recurrent otitis media –Myopia and ‘lazy eye’ –Flat feet, joint laxity –Epilepsy (20% in men) –GORD –ADHD in childhood and adolescence –Autism Syndromes

24. Tuberous Sclerosis- –Epilepsy –Problem behaviours –Skin Lesions –Hypertension –Renal Lesions –Polycystic kidney disease –Pulmonary complications Phenylketonuria (PKU) –Weight loss –Poor wound healing or bed sores –Osteoporosis –Hair loss –Depressive episodes –Anxiety –over activity Syndromes

25. Reasons for yearly health checks –Provides an opportunity to ensure health needs are identified and met. –Provides an opportunity to check & review patients Health Action Plan. –Provides an opportunity to offer health promotion advice. –Provides an opportunity to build relationship & desensitise any fears.

26. Communication 80% of people with learning disabilities will have difficulties communicating. Two way Understanding Expression Variety of methods

27. Diagnostic Overshadowing This means when a person's presenting symptoms are put down to their learning disability, rather than seeking another, potentially treatable cause. For example, when a person presents with a new behaviour or existing ones escalate, you should consider: Physical problems - pain or discomfort, e.g. from ear infection, toothache, constipation, reflux oesophagitis, deterioration in vision or hearing. Psychiatric cause - depression, anxiety, psychosis, dementia. Social cause - change in carers, bereavement, abuse.

28. Disability Rights Act 1995 Legal requirement not to treat disabled people less favourably. Legal requirement to make reasonable adjustments. To bring about equality it can be necessary to treat some people differently. Reasonable adjustments are often about practices and procedures rather than physical access, and often cost nothing.

29. Consent The Mental Capacity Act (2005): 5 Key Principles: Every adult has the right to make their own decisions & must be assumed capable of doing so until proved otherwise Everyone should be given all the support they need to make their own decisions before conclusions are made that they cannot

30. Consent People should be able to make unwise or eccentric decisions - it is capacity to make decisions, that is the issue Any decisions or anything done for or on behalf a person who lacks capacity must be made or done in their best interests Anything done for or on behalf of people without capacity should restrict their rights & freedoms as little as possible

31. The Community Learning Disability Teams include Administration & Team Support Physiotherapist Community Nurse Psychiatrist Occupational Therapist Psychologist Speech & Language Therapist Outreach Nurse Physical Activity coordinator –Social Worker Team

32. What do the Teams do? Provide health interventions and specialist therapies to support independence. Help people with learning disabilities access general health services. Share expertise including training, advice and practical support to people with learning disabilities, their families, carers and other agencies.

33. What do the Teams do? Support people with learning disabilities to stay healthy and safe, for example, health promotion. Support the communication needs of people with learning disabilities and help other health services to communicate effectively. Develop new ways of working with others to deliver better services for people with learning disabilities.

34. Fred Mild learning disability Communicates well Likes to please people Doesn’t like busy areas Gets anxious around strangers –Diarrhoea, constipation, bleeding loss of appetite nausea, vomiting –Abdominal examination – obese –Rectal examination – non compliant –Stool test occult blood – positive –Treated for haemorrhoids –Referral to hospital – letter received – illiterate DNA’ed –Letter to GP – not followed up –Weight loss –vomiting –Re-referred to GP –Urgent hospital referral – seen in 2 weeks RIP 1951 - 2004

35. How could we have supported Fred better? What systems could we put in place to prevent this happening again?

36. Fred –Has Health Facilitator who knows where to get help –Has regular health check –Has longer appointments –Waits in side room at practice –Invite has a picture of doctor he is going to sees –Generally sees the same doctor/nurse –Has a Health Action Plan supported by GP –Had Health education –Has accessible info about what to eat –Supported to Health Appointments –Had help to understand what happens at appointments –Keeps records 1951 – present date

37. Practice Guide: Preparation for Health Checks Identify a clinical lead for Learning Disabilities Verify register using LA list Identify which patients are priorities for health checks. Ensure standardised e-template is available for clinical system with agreed Read Codes GP, Practice Nurse and Practice Manager/ Senior Receptionist to attend multi-professional education session.

38. Ensure adequate appointment time has been allocated Obtain patient consent and consider risk and ‘best interests’ if consent not given Carry out health check. Capture details and outcomes of health check on e-template Invite patient for a health check (use appropriate method) and check this invitation has been received Draw up an agreed Health Action Plan in an appropriate format or add to current HAP or Health file (with actions, timeframes and responsibilities). Integrate this into patient’s medical record

39. Continue liaison with family and Community Learning Disability Team staff as appropriate Review practice procedure for health checks Attend any new or refresher training as appropriate Follow up any specific actions (referrals to other services, management of co-morbidities etc) Ensure patient review and recall system is in place Agree any follow up appointment or annual review date