Valuing Health Improving the Health of People with Learning Disabilities West Midlands Event 30.4.2007

1. Valuing HealthImproving the Health of People with Learning DisabilitiesWest Midlands Event 30.4.2007 Rachel Heywood � CSIP/ Valuing People Rick Robson & Ricky Owens - Shropshire Jo Corbett - Staffordshire Sherryl Gaskell- Coventry Jackie Howells - Dudley

2. Valuing People (2001) Valuing People said that � all people with learning disabilities should get the same health services that are available to everyone else with expert care when they need it� To enable people with learning disabilities to access a health service designed around their individual needs, with fast and convenient care delivered to a consistently high standard, with additional support where necessary�

3. Valuing People�s Health RIGHTS � to register with a doctor; to have access to community health services CHOICE � of the right care and support INDEPENDENCE � services will work with people to support them to be independent INCLUSION � people must be included in the way their local health and social services are delivered

4. Health Inequalities People with learning disabilities have greater health needs than most of the population � but often get the worse health services (Research Evidence on health needs of people with learning disabilities 2003) Health Services do not do enough to target their services/ or adapt them for people�s needs (DRC Enquiry 2006) People with learning disabilities are dying from preventable conditions (Mencap �Treat Me Right/ Death by Indifference� 2007)

5. Some of the key health needs of people Inequalities in cancer rates, preventable cancers and reduced access to screening Higher deaths from respiratory disease Increasing rates of CHD High rates of epilepsy High rates of sensory impairments Higher rates of dementia and young-onset dementia Higher levels of osteoporosis Less likely to eat healthy diet � more likely to be underweight or overweight Lower levels of physical activity Higher rates of severe mental health problems (ref: Key Highlights of Research Evidence on the Health of people with Learning Disabilities 2003)

6. Key Health Targets for Valuing People People with learning disabilities to be registered with a GP, and identified via GP read-codes People will have access to Health Facilitators All people will have a Health Action Plan Mainstream services (Primary Care and Hospitals) must make sure they are accessible for people Work to be developed to ensure that health inequalities are targeted Specialist services to meet specific and complex needs

7. From Valuing People to Our Health, Our Care, Our Say All-means-All Our Health, Our Care, Our Say for every person For every person with a learning disability Adds to Valuing People

8. What are the Key Things it Says? Choice and Control Better information Individual Budgets Easier access to services Community Based services Local Services for Local People Joined up Care Health, Social Services and Community Services need to work better together They need to make communication better and accessible

9. Equal Health People have the RIGHT to have the same access to good health Health Action Plans, to develop into �Personal Health & Social Care Plans� Good access to healthy opportunities i.e. Healthy Living Centres, Leisure Opportunities, Healthy Eating

10. Equal Health � Care from your Doctor Dr�s to make sure that INFORMATION is accessible and easy to understand Dr�s will �buy� services for people � need to make sure they are the right services for people

11. What�s happening in the West Midlands Health Facilitation Nurses in PCT�s Health Facilitation Network � share good practice, showcase at national events Learning Disability Nurses Network Access 2 Acutes Network National scoping of best-practice Learning Disability Partnership Boards � Health Groups Health Commissioners Networks

12. Thanks for the invite Privilege to be here and hope that you find it useful Ricky to introduce self RR Flurry of e-mails between CH & RRThanks for the invite Privilege to be here and hope that you find it useful Ricky to introduce self RR Flurry of e-mails between CH & RR

13. Outline Examine the issues faced by People with learning disabilities/ mental health need. Carers including Family carers and Staff Identify some practical solutions

14. Problems

15. Problems

16. Small fish in a big pond Circles of support Who makes which decisions? Who co-ordinates? How does the �patient / client� / person at the centre feel about all these people and their current situation ROBSON Small fish in a big pond Circles of support Who makes which decisions? Who co-ordinates? How does the �patient / client� / person at the centre feel about all these people and their current situation ROBSON

17. Access to Secondary Healthcare - Learning Disabilty

18. Communication Face to face Use person�s name Speak slowly Consider using audio recordings Check and check again Consent Consult with carers Examples Dr Who learnt Maketon Accessible format Objects of reference Speak to the personExamples Dr Who learnt Maketon Accessible format Objects of reference Speak to the person

20. We said that most important was To tell NHS Direct what our needs were and To have good communication We said that most important was To tell NHS Direct what our needs were and To have good communication

21. Communication Establish liaison group � PRH issue Pre op. assessment Commitment Can DO culture Helping hands � �volunteers� / care staff Co-ordination role for C. / N SaLT Board master symbols Code of practice need to be one care pathways SIG Champion cultivate a spare special interest group Difficult time for all parties Little or no information Often a poor comprehension of complex needs Diagnostic overshadowing Consent issues Carers� issues- informal -> relatives formal Confusion Communication Establish liaison group � PRH issue Pre op. assessment Commitment Can DO culture Helping hands � �volunteers� / care staff Co-ordination role for C. / N SaLT Board master symbols Code of practice need to be one care pathways SIG Champion cultivate a spare special interest group Difficult time for all parties Little or no information Often a poor comprehension of complex needs Diagnostic overshadowing Consent issues Carers� issues- informal -> relatives formal Confusion

22. Improving Access Now there is a big push by Health Services to get PwID better access to health. Working with NHS Direct is only a little bit of the work being done. Now there is a big push by Health Services to get PwID better access to health. Working with NHS Direct is only a little bit of the work being done.

23. Thank youFor further information Ricky Owen Rick Robson Telephone 01743 261 182 Email : rick.robson@shropshirepct.nhs.uk www.valuingpeople.gov.uk

26. PURPOSE OF NETWORK

29. Health Facilitation South Staffordshire PCT Introduce selvesIntroduce selves

30. Key issues of the training Explore the meaning of learning disabilities and consider its effect Explore primary healthcare for people with learning disabilities [PWLD] Explore some possible barriers to healthcare Have an awareness of recent government directives Have an understanding of Health Action Planning [HAP] Explore consent issues/Mental Capacity Act 2005 The training includes sharing information on these using group activitiesThe training includes sharing information on these using group activities

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32. Primary care Quality outcomes framework � practices to produce a register of people with learning disabilities. Data collected to cross reference other clinical registers and screening programmes. Templates for use in Health Screening. Reasons for training are to support requirements of qof and looking at options to support improving health of PWLD One of the ways of approaching this was to collect baseline info. Reasons for training are to support requirements of qof and looking at options to support improving health of PWLD One of the ways of approaching this was to collect baseline info.

33. Data collection sheet � Practice������������������ People on Learning Disability Register (918e) Adults (Over 18)��������������� Under 18�����������������... Total on register�������������� �No on other Clinical registers Diabetes������������������. Epilepsy������������������. Asthma������������������� Hypertension����������������. Obesity/BMI 30-50�������������� COPD�������������������. CHD�������������������� MH/depression/anxiety������������

34. Data collection sheet continued� Screening Number Eligible for Cervical screening����� Number taken���������������.. Number declined��������������.. Number Eligible for Breast Screening�����.. Number Taken���������������. Number Declined��������������. � Other No with Downs syndrome����������.. No with Downs over 40�����������.. � HAP offered (9HB1)�����������.. HAP completed (9HB4)�����������... HAP reviewed (9HB2)�����������... HAP Declined (9HB0)�����������..

35.  Epilepsy as expected, Diab similar rates to general pop although research suggests it could be as high as 9%. BMI not true reflection expect that to be much higher. COPD Respiratory disease is biggest cause of death. ?? The low figure reflects undetected cases. MH needs not recorded due LD. Break info down by locality and practice.Epilepsy as expected, Diab similar rates to general pop although research suggests it could be as high as 9%. BMI not true reflection expect that to be much higher. COPD Respiratory disease is biggest cause of death. ?? The low figure reflects undetected cases. MH needs not recorded due LD. Break info down by locality and practice.

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37. Uptake is quite good across staffs, however individual practices or groups are highlighted.Uptake is quite good across staffs, however individual practices or groups are highlighted.

38.  NHs cancer screening suggests 1 in 4 or only 25% of women with LD will have the test. General uptake is 80%NHs cancer screening suggests 1 in 4 or only 25% of women with LD will have the test. General uptake is 80%

40. Coventry & Warwickshire Partnership Trust Sherryl Gaskell, Health Facilitator, Lead Nurse. CLDT, Henley Green Road, Coventry, CV2 1AG. Telephone 02476 785950 sherryl.gaskell@coventry.gov.uk

41. Health Facilitation A Learning Disability Nurse Led Model Acute Liaison Education Group work Health checks

42. Acute Liaison University Hospital Coventry & Warwickshire Learning Disability Steering Group Modern Matrons Collaborative Protocols Funding arrangements Neurology links Essence of Care Link Nurses

43. Education Direct care providers NVQ & LDAF accreditation Well person group Healthy Lifestyles � service users & staff teams training Road-shows

44. Health Facilitation Process Why this method? 6 Localities within Coventry Information packs sent to GP�s Practice meeting Read Code searches & cross reference GP report Database

45. Health ChecksFindings

49. Skin � Ulcerated and infected

50. Foot Health referral?

51. Foot Health

52. Outcomes Identified significant unmet need Increase referrals Raised awareness of client group Increased knowledge base Increased confidence Collaborative working

53. The Future Hand role over the Practice Nurses Joint checks with Practice Nurses Audit health check outcomes Develop training packages Develop group work Develop protocols to include PAM�s

54. Jackie HowellsDudley �Increasing the uptake of breast screening for women with learning disabilities�

55. Screening programmes for women with Learning Disabilities Jacqui Howells Dudley PCT.

56. Breast Screening Dudley breast screening service has created an improved service tailored to meet the needs of women with Learning Disabilities. Prior to this service, there was no protocol to identify which women had LD, uptake was often poor and below the national average (41%).

57. Key objectives of the service To increase uptake of breast screening by women with learning disabilities. To improve the health and well being of this excluded group. To promote good health. To provide information in an accessible, understandable way.

58. Service development Using the Special Needs Register, eligible women were identified by age, GP practice, address and date of birth. Screening invitation letters were adapted to have symbols and simple language. Each woman was assessed and offered support to meet their needs. The use of �disabled� appointments meant women were given more time in department.

59. Results and Benefits Before the service uptake was 67% and 2006 it was 73%. Three screen detected cancers have been identified and treated and two women still survive. Women and their carers have been educated in breast awareness. Women have re-attended for further screening appointments. Women who have previously DNA�d have now attended.

60. Screening uptakes for LD women

61. Cervical Screening Due to a lack of information available in an understandable format, many women with learning disabilities do not attend the NHS cervical screening programme As a result, uptake in this client group is exceptionally low with incidents of women being ceased from the programme for in appropriate reasons

62. Findings in Dudley. 314 women with LD were eligible, of those women only 125 were called. 104 were ceased from the programme for no reason 17 disclaimers signed 16 at GP request 6 as they have Downs Syndrome 17 have moved out of borough 7 have no cervix 22 no current trace of these women