1. NHS North Yorkshire and York Community and Mental Health Services Learning Disability Awareness Session Training for Primary Care Staff. DES 2008 / 2009

2. NHS North Yorkshire and York Community and Mental Health Services Aims To include : Definition of Learning Disability Definition of Learning Disability Prevalence Prevalence Learning Disability health issues and barriers Learning Disability health issues and barriers The use of health checks in relation to meeting the needs of people with learning disabilities The use of health checks in relation to meeting the needs of people with learning disabilities Consent Consent Disability Discrimination Act / Duty Disability Discrimination Act / Duty Health action plans and health facilitation Health action plans and health facilitation Explore ways in which to increase the effectiveness of the health check appointment. Explore ways in which to increase the effectiveness of the health check appointment.

3. NHS North Yorkshire and York Community and Mental Health Services What is a Learning Disability? Learning disability includes the presence of: A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence) with: 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) A reduced ability to cope independently (impaired social functioning) Which started before adulthood, with a lasting effect on development Which started before adulthood, with a lasting effect on development (Valuing People 2001) (Valuing People 2001)

4. NHS North Yorkshire and York Community and Mental Health Services Learning Disability does not include learning difficulty learning difficulty a change in ability after the age of 18 years a change in ability after the age of 18 years Aspergers / Autism where IQ is above 70 Aspergers / Autism where IQ is above 70 A definitive IQ cut off point (social functioning and communication should be considered) A definitive IQ cut off point (social functioning and communication should be considered) Valuing People 2001 Valuing People 2001

5. NHS North Yorkshire and York Community and Mental Health Services World Health Organisation (WHO 1992)ICD.10 IQMACode Mild50-69(9-12)F70 Mild50-69(9-12)F70 Moderate35 – 49(6-9)F71 Moderate35 – 49(6-9)F71 Severe20 – 34(3-6)F72 Severe20 – 34(3-6)F72 Profound<20(<3)F73 Profound<20(<3)F73

6. NHS North Yorkshire and York Community and Mental Health Services Levels of Learning Disability Mild Learning Disability – IQ between 50 – 70, independent with social care, coupled with the ability to maintain social networks and employment. Mild Learning Disability – IQ between 50 – 70, independent with social care, coupled with the ability to maintain social networks and employment. Moderate LD – IQ between 35 – 50 some degree of day to day support required, often living with family and accessing services in the community Moderate LD – IQ between 35 – 50 some degree of day to day support required, often living with family and accessing services in the community

7. NHS North Yorkshire and York Community and Mental Health Services Levels of Learning Disability Severe/Profound LD below 35 – individualised communication using non verbal techniques, this may be coupled with physical impairments and mobility issues. This group will rely upon a circle of support to identify any health issues. Severe/Profound LD below 35 – individualised communication using non verbal techniques, this may be coupled with physical impairments and mobility issues. This group will rely upon a circle of support to identify any health issues.

8. NHS North Yorkshire and York Community and Mental Health Services Prevalence of Learning Disability National prevalence estimated at 2-3% National prevalence estimated at 2-3% Severe and profound 210,000 Severe and profound 210,000 65,000 children 120,000 adults of working age 25,000 Older people Mild to Moderate 25 per 1000 population Mild to Moderate 25 per 1000 population (1.2 Million) (1.2 Million) Per GP practice of 2000 patients – average of 40 people with a learning disability. Per GP practice of 2000 patients – average of 40 people with a learning disability.

9. NHS North Yorkshire and York Community and Mental Health Services Health Issues – more likely to : Die early Die early Die from breathing problems Die from breathing problems Have heart problems Have heart problems Have certain cancers Have certain cancers Have epilepsy Have epilepsy Have autism Have autism Be mentally ill Be mentally ill

10. NHS North Yorkshire and York Community and Mental Health Services Health Issues – more likely to : Have dementia Have dementia Be given psychotropic drug Be given psychotropic drug Have a physical disability Have a physical disability Have sensory impairments Have sensory impairments Have communication problems Have communication problems Have dental problems Have dental problems

11. NHS North Yorkshire and York Community and Mental Health Services Syndromes Down’s syndrome – Hypothyroidism Hypothyroidism Visual & hearing impairment Visual & hearing impairment Reoccurring respiratory tract infections Reoccurring respiratory tract infections Sleep apnoea Sleep apnoea Obesity Obesity Dementia Dementia Congenital heart disease Congenital heart disease

12. NHS North Yorkshire and York Community and Mental Health Services Health Issues – less likely to : Have a health check Have a health check Be screened for cancer Be screened for cancer Have a sight test Have a sight test Have a hearing test Have a hearing test Receive pain relief Receive pain relief Get health promotion advice Get health promotion advice

13. NHS North Yorkshire and York Community and Mental Health Services Barriers to accessing Primary Care Trying to limit and remove Barriers to healthcare would be considered a responsibility under the Disability Discrimination Act The following information was gathered from services users and carers following a Health Check-up day The following information was gathered from services users and carers following a Health Check-up day

14. NHS North Yorkshire and York Community and Mental Health Services Barriers Having difficulty when ringing the service with automated multi-choice systems Having difficulty when ringing the service with automated multi-choice systems Difficulty with touch screen systems Difficulty with touch screen systems Not been spoken to directly Not been spoken to directly People not been fully aware of the medication they take or why they take it People not been fully aware of the medication they take or why they take it Doctors and nurses using words which they cannot understand Doctors and nurses using words which they cannot understand

15. NHS North Yorkshire and York Community and Mental Health Services Barriers Receiving letters that they cannot understand Receiving letters that they cannot understand Appropriate examinations not always being carried out Appropriate examinations not always being carried out Lack of facilities within the practice i.e. hoists Lack of facilities within the practice i.e. hoists Not enough time being allowed for appointments Not enough time being allowed for appointments No changing facilities for people’s personal care needs No changing facilities for people’s personal care needs

16. NHS North Yorkshire and York Community and Mental Health Services Why is Learning Disability an issue? Valuing People (DOH 2001) Valuing People (DOH 2001) Treat me right (Mencap 2004) Treat me right (Mencap 2004) Closing the Gap Closing the Gap Disability Rights Commission (2006) (2006) Death by indifference Death by indifference Mencap (2007) Health Care for all Health Care for all Independent inquiry (2008)

17. NHS North Yorkshire and York Community and Mental Health Services Findings More ill health than other people More ill health than other people Higher rates of premature death Higher rates of premature death Diagnostic overshadowing Diagnostic overshadowing Low uptake of health screening Low uptake of health screening Difficulty accessing health services Difficulty accessing health services Low rates of pain relief Low rates of pain relief Poor communication of public health messages Poor communication of public health messages Carers not involved appropriately regarding capacity issues Carers not involved appropriately regarding capacity issues

18. NHS North Yorkshire and York Community and Mental Health Services Mental Capacity Act Code of Practice 2005

19. NHS North Yorkshire and York Community and Mental Health Services What is Mental Capacity? Mental Capacity is the ability to make a decision. This includes the ability to make a decision that affects daily life – such as when to get up, what to wear, or whether to go to the doctor when feeling unwell as well as more serious or significant decisions Mental Capacity is the ability to make a decision. This includes the ability to make a decision that affects daily life – such as when to get up, what to wear, or whether to go to the doctor when feeling unwell as well as more serious or significant decisions

20. NHS North Yorkshire and York Community and Mental Health Services What is Mental Capacity? It also refers to a person’s ability to make a decision which may have legal implications – for them or others. Examples include agreeing to medical treatment, buying goods or making a will It also refers to a person’s ability to make a decision which may have legal implications – for them or others. Examples include agreeing to medical treatment, buying goods or making a will

21. NHS North Yorkshire and York Community and Mental Health Services What does the act do? It provides the legal framework for acting and making decisions on behalf of individuals who lack capacity to make a particular decision for themselves It provides the legal framework for acting and making decisions on behalf of individuals who lack capacity to make a particular decision for themselves Everyone working with or caring for an adult who may lack capacity must comply with this act. Everyone working with or caring for an adult who may lack capacity must comply with this act. The same rules apply for decisions that are life- changing as well as everyday matters The same rules apply for decisions that are life- changing as well as everyday matters

22. NHS North Yorkshire and York Community and Mental Health Services Mental Capacity Act 5 Key Principles 1A person must be assumed to have capacity unless it is established they lack capacity 1A person must be assumed to have capacity unless it is established they lack capacity 2A person is not to be treated as unable to make a decision unless all practical steps to help him do so have been taken 2A person is not to be treated as unable to make a decision unless all practical steps to help him do so have been taken

23. NHS North Yorkshire and York Community and Mental Health Services Mental Capacity Act 5 Key Principles 3A person is not to be treated as unable to make a decision merely because he makes an unwise decision 3A person is not to be treated as unable to make a decision merely because he makes an unwise decision 4An act done, or decision made, under the Act for or on behalf of a person who lacks capacity must be done, or made, in his or her ‘best interest’ 4An act done, or decision made, under the Act for or on behalf of a person who lacks capacity must be done, or made, in his or her ‘best interest’

24. NHS North Yorkshire and York Community and Mental Health Services Mental Capacity Act 5 Key Principles 5Before the Act or decision is completed, regard must be given as to whether the purpose for which it is needed can be as effectively done in a way that is less restrictive 5Before the Act or decision is completed, regard must be given as to whether the purpose for which it is needed can be as effectively done in a way that is less restrictive

25. NHS North Yorkshire and York Community and Mental Health Services The Act involves several new roles, all of which will support the Act Attorneys appointed under lasting Power of Attorney Attorneys appointed under lasting Power of Attorney New Court of Protection and Court appointed deputies New Court of Protection and Court appointed deputies (IMCA) Independent Mental Capacity Advocate: this is someone who is there to help people who are unable to make decisions for themselves (IMCA) Independent Mental Capacity Advocate: this is someone who is there to help people who are unable to make decisions for themselves

26. NHS North Yorkshire and York Community and Mental Health Services Disability Discrimination Act The Disability Discrimination Act 2005 is there to put into law the reasonable rights of a disabled person The Disability Discrimination Act 2005 is there to put into law the reasonable rights of a disabled person Reasonable is a vague term, but we would recognise that rather than saying something is not possible because someone is disabled, or exempt them from QOF on the basis of things being impossible to carry out, we should look at what we can change to make things fairer Reasonable is a vague term, but we would recognise that rather than saying something is not possible because someone is disabled, or exempt them from QOF on the basis of things being impossible to carry out, we should look at what we can change to make things fairer

27. NHS North Yorkshire and York Community and Mental Health Services Disability Discrimination Act A reasonable adjustment is a change you need to make to your business in order to meet the duties of the Disability Discrimination Act. A reasonable adjustment is a change you need to make to your business in order to meet the duties of the Disability Discrimination Act. The DDA gives disabled people important rights of access to everyday services which includes services provided by local councils, doctors, shops theatres etc. The DDA gives disabled people important rights of access to everyday services which includes services provided by local councils, doctors, shops theatres etc. Access to services is not just about installing ramps and widening doorways for wheelchair users. It is about making services easier to use for disabled people. Access to services is not just about installing ramps and widening doorways for wheelchair users. It is about making services easier to use for disabled people.

28. NHS North Yorkshire and York Community and Mental Health Services Disability Discrimination Act The direct.gov.website breaks things down into five key areas The direct.gov.website breaks things down into five key areas Access to goods, premises and services Access to goods, premises and services Rights in employment Rights in employment Rights in Health Rights in Health Education Education Mental Health Mental Health Transport Transport

29. NHS North Yorkshire and York Community and Mental Health Services Disability Equality Duty Since December 2006, there has been a legal duty on all public sector organisations to promote equality of opportunity for disabled people. Since December 2006, there has been a legal duty on all public sector organisations to promote equality of opportunity for disabled people. People who work in the public sector have to consider the impact of their work on disabled people, and take action to tackle disability inequality. People who work in the public sector have to consider the impact of their work on disabled people, and take action to tackle disability inequality. The Disability Equality Duty is meant to ensure that all public bodies - such as central or local government, schools, health trusts or emergency services – pay ’due regard‘ to the promotion of equality for disabled people in every area of their work. The Disability Equality Duty is meant to ensure that all public bodies - such as central or local government, schools, health trusts or emergency services – pay ’due regard‘ to the promotion of equality for disabled people in every area of their work.

30. NHS North Yorkshire and York Community and Mental Health Services What does the Learning Disability team do? Provide health interventions and specialist therapies to support independence Provide health interventions and specialist therapies to support independence Provide advice and support about accessing generic health services Provide advice and support about accessing generic health services Share expertise including training, advice and practical support to people with learning disabilities, families, carers, health colleagues and other agencies. Share expertise including training, advice and practical support to people with learning disabilities, families, carers, health colleagues and other agencies.

31. NHS North Yorkshire and York Community and Mental Health Services What does the Learning Disability team do? Support people with learning disabilities to stay healthy and safe, e.g. health promotion advice Support people with learning disabilities to stay healthy and safe, e.g. health promotion advice Support the communication needs of people with learning disabilities and help other health professionals and services to communicate effectively. Support the communication needs of people with learning disabilities and help other health professionals and services to communicate effectively. Develop new ways of working with others to deliver better services for people with learning disabilities. Develop new ways of working with others to deliver better services for people with learning disabilities.

32. NHS North Yorkshire and York Community and Mental Health Services Who can support you? Health Facilitation Health Facilitation Learning Disability Team (Health) Learning Disability Team (Health) Who is in the team? Administration Physiotherapist Occupational therapist Community Nurses Healthcare Assistant Speech and language Therapist Consultant Psychiatrist Psychologist Health Facilitator Health Facilitation Nurse Dietitian

33. Strategic Level -Service development work - Informing planning & commissioning Specialist level A health professional who provides advice, support or treatment usually on a short term basis in partnership with patient & their Health Facilitator. can support or Contribute to the Health Action Plan Individual level Focus on individual work and health outcomes. A support worker, advocate, friend, or family carer could fulfil the role at this level. The person should choose who they want as their Health Facilitator. Joint working required between different levels of Health facilitation Varying levels Of support to the individual

34. NHS North Yorkshire and York Community and Mental Health Services Removing the Barriers Health Action Plans Health Action Plans Health Checks Health Checks Reasonably adjusted services Reasonably adjusted services

35. NHS North Yorkshire and York Community and Mental Health Services What is a Health Action Plan? It is owned by the person but usually created together with other people It is owned by the person but usually created together with other people It is a document to enable people with learning disabilities to record information about their health It is a document to enable people with learning disabilities to record information about their health It identifies who will support them to maintain and improve their health It identifies who will support them to maintain and improve their health

36. NHS North Yorkshire and York Community and Mental Health Services Health Action Plan A summary of the person’s Health Action Plan should be held by the GP A summary of the person’s Health Action Plan should be held by the GP It should be updated as the person’s health needs change and reviewed at least annually It should be updated as the person’s health needs change and reviewed at least annually It helps the person and their carers to understand more about their health It helps the person and their carers to understand more about their health

37. NHS North Yorkshire and York Community and Mental Health Services Functions of Health Action Plans Health Action Plan Person centred Belongs to the person Accessible Identifies health needs List actions needed Identify support needs Provides links to GP, Primary care & other agencies Educates and informs Coordinates services Influences services

38. NHS North Yorkshire and York Community and Mental Health Services Action By Whom By When Outcome Treatment Plan

39. NHS North Yorkshire and York Community and Mental Health Services Why yearly health checks are important. ensure health needs are identified and met ensure health needs are identified and met check and review patients Health Action Plans/Treatment plans check and review patients Health Action Plans/Treatment plans offer health promotion advice offer health promotion advice to build relationships to build relationships assist in meeting NSF targets assist in meeting NSF targets prevent illness and assist in early diagnosis prevent illness and assist in early diagnosis identify previously unrecognised health problems within the learning disability population identify previously unrecognised health problems within the learning disability population medication reviews could lead to reduced prescribing medication reviews could lead to reduced prescribing

40. NHS North Yorkshire and York Community and Mental Health Services Making Health Checks Happen Accessible invitation Accessible invitation Follow-up the invitation Follow-up the invitation Contact those who have not responded Contact those who have not responded You may find it helps to ring and remind people the day before You may find it helps to ring and remind people the day before

41. NHS North Yorkshire and York Community and Mental Health Services Reasonable Adjustments some ideas……. Extra time for appointments to help communication Extra time for appointments to help communication Easy read / accessible information and letters Easy read / accessible information and letters Giving the patient a print out of health information for health action plan Giving the patient a print out of health information for health action plan Giving patient a written record of the appointment Giving patient a written record of the appointment Seeing the person where they feel safe e.g. the car park Seeing the person where they feel safe e.g. the car park

42. NHS North Yorkshire and York Community and Mental Health Services But remember….. People want you to speak to them People want you to speak to them It is OK to ask the best way to communicate It is OK to ask the best way to communicate People want information about treatments and medications People want information about treatments and medications Carers can have very valuable information Carers can have very valuable information People with learning disabilities have the same illness worries and concerns as the rest of your caseload! People with learning disabilities have the same illness worries and concerns as the rest of your caseload!

43. NHS North Yorkshire and York Community and Mental Health Services READ CODES Learning Disability Assessment: 9HB39HB5 69DB from 2009/10 (see revised DES spec Sept 2009)

44. NHS North Yorkshire and York Community and Mental Health Services PRACTICE GUIDE: PREPARATION FOR HEALTH CHECKS SEE HANDOUT

45. NHS North Yorkshire and York Community and Mental Health Services Useful contacts and thanks With thanks to GP Tom Website WWW.gptom.com With thanks to GP Tom Website WWW.gptom.com WWW.gptom.com http://www.bild.org.uk/05faqs.htm#FAQs http://www.bild.org.uk/05faqs.htm#FAQs http://www.bild.org.uk/05faqs.htm#FAQs www.rcgp.org.uk www.rcgp.org.uk www.rcgp.org.uk “A step by step guide for GP practices: Annual Health Checks for People with a Learning Disability”

46. NHS North Yorkshire and York Community and Mental Health Services QUESTIONS