Primary Care for patients with a Learning Disability

1. Primary Care for patients with a Learning Disability National Health Facilitation Network 25th June 2013

2. Who am I? Guy Bradley-Smith St Thomas Health Centre, Exeter

3. GBS and Learning Disability (LD) Exeter Primary Care Group Vice-Chair 1999 - 2001 March 1999 ...then Exeter Primary Care Trust lead for LD

4. GBS and Learning Disability (LD) A GP with a list of 2000 patients can expect to have 40 PWLD on that list of whom 8 will have a severe LD. • 1/3 will have a physical disability • 1/3 will have epilepsy • 1/3 will have visual problems • 40% will have hearing problems • ~50% will have mental health problems • 50-90% will have communication problems

5. Mike Kerr : Crises of Care PWLD have more health problems with: • Increased mortality • Increased morbidity • Increased negative determinants of health (financial, housing , employment etc.)

6. Mike Kerr : Crises of Care And PWLD have more problems with healthcare because of: • Unequal access to health services • Inequality in provision of health services

7. Why is their health and healthcare so poor? • Low expectations • Not knowing they are unwell • Inability to engage with Primary Care • Literacy/Numeracy problems • Genetic issues (Down’s dementia etc) • Failure to engage with screening programmes • Lack of knowledge in Primary Care staff • Lack of integration with carers

8. a new challenge .....

9. Comparing names of patients/clients .....

10. Comparing names of GP patients/ DCC clients .....

11. Valuing People 2001 The first White Paper on learning disability for thirty years set out an ambitious and challenging programme of action for improving services March 2001

12. Cornwall 2006 Meeting with GP colleagues to discuss the specific needs of LD patients and the role of the GP

13. Royal Devon & Exeter Hospital 2006 Liz Jennings, Liaison nurse for Adults with a Learning Disability, Royal Devon and Exeter Foundation Trust

14. PWLD Healthcare 2007 The Death by indifference campaign began after six people with a learning disability died in NHS care. Their families were not getting answers about why their loved ones had died, or why they were treated so badly because they had a learning disability.  March 2007

15. Darzi review 2008 Learning Disability considered separately from Mental Health by Sir Ian Carruthers, Chair of the South-West SHA ..... token GP ........

16. PWLD Healthcare 2009 This report illustrated some significant and distressing failures in service across both health and social care, leading to situations in which people with learning disabilities experienced prolonged suffering and inappropriate care. March 2009

17. PWLD Healthcare 2009 Valuing people now set out the Government's strategy for people with learning disabilities for the following three years following consultation.  January 2009

18. GBS LD Healthcare 2009 ..many managers, 1 GP, funding issues .......

19. GBS LD Healthcare 2010 ..many managers, 2 GPs, funding issues .......

20. PWLD Healthcare 2012 74 deaths and counting confirmed that, although some positive steps have been taken in the NHS, many health professionals are still failing to provide adequate care to people with a learning disability. The report highlights the deaths of 74 people with a learning disability in NHS care over the last ten years – highlighted in an article in The Guardian on 3 January – which Mencap believes are a direct result of institutional discrimination and could have been avoided. February 2012

21. CIPOLD ... family commitment, superb GP care, amazing allied health professional support... .....effects of institutional care, diagnostic overshadowing, capacity and consent ... Family commitment and determination, outstanding Primary healthcare, superb allied health professionals...

22. Pre-1980 Pre- 1980, a large proportion of People with a Learning Disability (PWLD) were cared for institutions eg. Langdon Hospital.

23. 1980 onwards The move to getting them out of these into the community was led by the DH. Devon was one of the first to achieve the goal of getting these patients into the community. What difficulties with this policy might you have expected?

24. You have an LD and, today, feel ill…

25. Person Centred Care Reasonable Adjustments…. An Inconvenience Store

26. Attempts to improve PWLD healthcare……. • PCMD Student Selected Units

27. Attempts to improve PWLD Primary healthcare……. • RCGP Curriculum Statement 14

28. Attempts to improve PWLD healthcare……. • Primary Care Learning Disability Liaison nurses Julie Wilkins

29. Attempts to improve PWLD healthcare……. • RD&E Liaison nurse Liz Jennings From 1 WTE to 3 WTE!!

30. Attempts to improve PWLD healthcare……. • Annual Health Check DES and LES

31. GP Annual Health Checks for PWLD • Currently in their 3rd year • LD patients need to be identified • Cross correlation with DCC registers • Invitation to attend sent out • Protocol set by practice • Report required at the end of the year • £50 aspiration payment followed by £50 at end of year per patient for completed health checks

32. GP Annual Health Checks for PWLD Reduced Cardiff Health Check: • Nurse 10 mins • Height, Weight, BMI • BP • Ears • Urinalysis • Smoking, Alcohol • Immunisations • Date last saw Optician, GDP • GP 20 mins • Other CDM reviews • Meds review especially Epilepsy • Screening to date • Contraception • Systems review • Systems exam as indicated • Syndrome specific • Secondary Care issues?

33. GP Annual Health Checks for PWLD Issues can that practices need to consider: • Cross-correlation of NHS/DCC lists • Mild/Moderate/Severe LD? • Invitations • Staff Roles Cost/Benefit ...

34. Mencap GIR-FTS • 3 year project • 4 CCGs • 20 Practices in each area • Empowering PWLD • Reasonable Adjustments

35. MENCAP GIR • Similar projects in Tyneside, Surrey and Northampton • 2 main approaches: • Advice service: Surgeries viewed through the eyes of LD Champions and mentors to offer suggestions about ‘reasonable adjustments’ • Training workshops to all Primary healthcare staff • National implications ………

36. GIR - Benefits for Practices and CCGs • And ......... • DDOC • Public Health • Dentists

37. Person Centred Care Legislation: • Human Rights Act (1998) • Mental Capacity Act (2005) • Equality Act (2010) • Safeguarding processes

39. Points to consider • Institutional care

40. Institutional care .. has gone

41. Institutional care ...raised awareness, CCG governance, CQC ........ or has it..........

42. Points to consider • Institutional care • The G in GP

43. The G in GP • Stands for General

44. The G in GP • Stands for General

45. The G in GP • Stands for General

46. Points to consider • Institutional care • The G in GP • The future of Annual Health Checks (AHCs)

47. AHCs most obvious benefits? • Primary Care staff learning • Relationship building both with PWLD and their Carers

48. AHCs biggest challenge .... Dieticians....... ...Opticians, Audiologists, Pharmacists, Dentists ...... 52% LD patients had a BMI >30 35% LD patients had a BMI >35

49. GP Annual Health Checks for PWLD The numbers are on the decline .... and the pick-up rate is also falling...

50. Points to consider • Institutional care • The G in GP • The future of Annual Health Checks (AHCs) • The shared general needs of patients both with and without a Learning Disability