Health Facilitation for People with Learning Disabilities

1. HEALTH FACILITATIONHEALTH ACTION PLANNINGFROM POLICY TO PRACTICEWORKING WITH CARERS Mark Bradley Health Facilitation Co-ordinator

2. ‘Why we are here?’ – an overview of the current policy etc. The Pattern of ill-health in people with LD. Health action planning and Health Facilitation – Best Practice. Using Personal Health Profiles Comprehensive and effective health checks Working with Primary Care and Acute Hospital Services. What the Future holds? Topics covered:

3. Why are we here? • A number of recent reports highlight the inequalities in health care experienced by people with learning disabilities; in terms of health outcome and their experience of mainstream NHS services. • Clear recommendations have been made to address these inequalities...

4. Valuing People (2001)Did anything happen re: health? • Key ‘HEALTH’ actions were: • To reduce health inequalities • Health Facilitators for everyone with LD by Spring 2003 • GP registration for everyone by 2004 • Health Action Plans for everyone with LD by 2005 • None of the above happened...

5. Disability Rights Commission (2006) – Equal Treatment: Closing the Gap • Findings identified health inequalities: • Poorer general health in LD. • Good mainstream NHS services ‘patchy’ at best. • Lack of effective NHS Systems to manage LD health needs • Over 30 recommendations made to the DH – including health checks.

6. DH response to the DRC report ‘Promoting Equality’ (2007) • Set up ‘Promoting Equality Steering Group’ now the ‘Valuing People Now Health Steering Group’ • Upheld most of the recommendations. • Health Checks for people with LD one of the more pressing issues.

7. Death By Indifference (2007) • Mencap report highlighting NHS ‘Indifference’ relating to the deaths of 6 people with LD. • Called for a public and independent inquiry. • Asked for Annual Health Checks for people with LD (referring to ‘Treat Me Right’ – 2004). • Asked for a confidential inquiry into premature deaths (mentioned in VP 2001 – not achieved)

8. Healthcare for All (2008) • Secretary of State for Health commissioned an ‘Independent Inquiry into Access to Healthcare for People with LD’ led by Sir Jonathan Michaels. • He made 10 recommendations. • ‘There is evidence of a significant level of avoidable suffering and a high likelihood that there are deaths occurring which could be avoided.’ • 1 recommendation was for a Directed Enhanced Service for Health Checks

9. Directed Enhanced Service (2008) • The DH in negotiation with NHS Employers and the BMA, agreed to include Annual Health Checks for Adults with LD in their Directed Enhanced Service 2008 – 2010. • This scheme has been continued into 2011. • It calls for greater joint working arrangements between social care, specialist services and primary care.

10. Valuing People Now (2009) • Published in Jan 09. • This DH 3 year strategy upholds the 10 recommendations in Healthcare for All. • ‘Health’ is one of the main priorities. • Public Health Observatory commenced = better data on LD. • Key reference made to annual health checks.

11. Health Facilitation and Health Action Planning (2009) • Published in March 09. • This good practice guidance builds on the DH response to the DRC report and Michael’s inquiry. • It describes what ‘Good Health Facilitation looks like’ • Again, it refers to the importance of comprehensive health checks and everyone’s role in health action planning.

12. Six Lives: NHS Ombudsman Public Inquiry (2009) • Published in March 09. • ‘Our investigation reports illustrate 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.’

13. Six Lives: NHS Ombudsman Public Inquiry (2009) • ‘all NHS and social care organisations in England should review urgently: • the effectiveness of the systems they have in place to enable them to understand and plan to meet the full range of needs of people with learning disabilities in their areas; & • the capacity and capability of the services they provide and/or commission for their local populations to meet the additional and often complex needs of people with learning disabilities; • And should report accordingly to those responsible for the governance of those organisations within 12 months of the publication of this report.’

14. So what now? • What is clear from the reports is that: • Despite some good ‘patchy’ practice… • We do not work well enough together to truly assess, identify and systematically record the health needs of our local learning disabled population. • This needs to be done… now.

15. Health Checks… • Health Checks are widely recommended. • Is everyone completely clear about what a comprehensive health check is? • Does everyone know about or understand the system for recording information gathered in health checks? • If not….? • What steps do we need to take?

16. The following slides have been put together, mainly for primary care staff to consider the different pattern of ill-health in the LD population. For carers, it is useful to remind ourselves of what the reasons are for developing a system of organised health checks. So…. what are these differences? HEALTH QUIZ!

17. Learning Disability Health Quiz People with LD are ??? times more likely to die before the age of 50:

18. Learning Disability Health Quiz 15% - 17% of the general population die of respiratory diseases. What is the percentage range in people with learning disabilities?

19. Learning Disability Health Quiz 1% of the general population have epilepsy. What % of people with LD have epilepsy?

20. Learning Disability Health Quiz You are (??) times more likely to die from something that could have been avoided if you have a learning disability?

21. Learning Disability Health Quiz The % of people with dementia (65+) is 5.7% (Gen pop). What is the percentage for adults (65+) with LD?

22. Learning Disability Health Quiz In the general population 77% of women have cervical smear tests, for women with learning disabilities the percentage is?

23. How did you do? The following slides provide more information relating to the different pattern of ill-health in LD when compared to the general population

24. 26% of people with LD are admitted to general hospitals each year compared to 14% of the general population These are unacceptable health inequalities

25. It’s about Safety! • National Patient Safety Agency Report 2004 • ‘’People with learning disabilities are more at risk of things going wrong than the general population, leading to varying degrees of harm being caused while in hospital “.(Especially for those with higher support needs)

26. Mortality – People with learning disabilities are 58 times more likely to die before the age of 50 Cancer – The pattern of cancer is different in LD with lower rates of lung, prostate, and urinary tract cancers, and higher rates of oesophageal, stomach, and gall bladder cancer and leukaemia. Helicobacter Pylori Infection: endemic in LD population – postulated that high prevalence of this infection leads to a higher prevalence of gastric carcinoma. Health Issues in LD

27. Health Issues in LD • Respiratory Disease – Most common cause of death – rates 3 times higher than general population at 46 – 52%. • CHD – 2nd most common cause of death in LD - nearly 50% of people with Down’s Syndrome have congenital heart defects. • Sensory Impairments – Common visual impairments and 40% hearing Impaired. • Epilepsy – At 22% of the LD population it’s over 20 times more common than in the general population (=1%) • SUDEP (Sudden Unexplained death in epilepsy) – 5 times more common in LD than in others with epilepsy

28. Dementia – rates 4 times greater and early onset in Down’s Syndrome ThyroidFunction – Greater risk of hypothyroidism MentalHealth – Schizophrenia is 3 times more common Osteoporosis – substantially less bone density Importance of PosturalCare!!! See: www.posturalcareskills.com Health Issues in LD

29. Gastro oesophageal reflux disease ~ 48% of people with LD with IQ below 50 as a result of poor gastric motility. 10 times rate in normal population. Predisposing factors cerebral palsy, scoliosis, severe/profound LD and anticonvulsants Frequently goes undiagnosed due to difficulties in reporting symptoms and pain

30. National Patient Safety Agency Report: “Understanding the patient safety issues for people with learning disabilities” (2004) • “Swallowing difficulties are more common in people with learning disabilities. If not managed safely they can lead to respiratory tract infections, a leading cause of early death”. • Poor nutrition and hydration • Carers lack of awareness of the symptoms of aspiration • Problems of implementing health guidelines in social care settings

31. PEOPLE WITH LEARNING DISABILITIES 36% of individuals in long-stay hospital had chewing and/or swallowing problems Hickman J (1997): ALD and Dysphagia: issues and practice. Speech and Language Therapy in Practice Autumn:8-11 60% people with Cerebral Palsy have difficulties with chewing and/or swallowing Del Giudice E, Staiano A, Capano G, Romano A, Florimonte L, Miele E, Ciarla C, Campanozzi A and Crisanti A F (1999): Gastrointestinal manifestations in children with cerebral palsy. Brain & Development Jul;21(5):307-11 People with CP show a deterioration in oral motor skills and dysphagia in their early 30’s Sheppard J J (2002): Swallowing and feeding in older people with lifelong disability. Advances in Speech Language Pathology Sept; 4( 2):119-21

32. As many as a quarter of the respiratory disease deaths of PLD can be directly linked to aspiration pneumonia Community Services Commission (2001): Disability, death and the responsibility of care. Sydney: New South Wales Community Services Commission

33. COFFEEBREAK20mins

34. Health Facilitation, Health Checks and Personal Health Profiles – but first…

35. Bexley Care Trust • Total Population = 226,382 (Bexley Care Trust – March 2010) • Expected LD population based on national stats (1.8 - 3%) = from 4,074 - 6,791 pwld (including children) • QOF population 18+ = 495 (Nov 09) • Bexley LDT register = 723 using specialist LD services • Bexley Mild LD list included = 64 • Some in out of borough placements

36. Greenwich • Total Population = 267,000 (Annual Report 07/08) • Expected LD population based on national stats (2-3%) = from 5,340 to 8,010pwld (including children) • Current Qof figures = 545 (Nov 09) • Greenwich LDT register = 806 using specialist LD services • Some in out of borough placements

37. The Health Checks - DES requirements: Practices will keep this register up to date (in addition to the existing LD QOF registers) and ensure all those on the health check register are included on the QOF register Practices will attend multi-professional training Practices will include patients identified by this liaison in a ‘Health Check Register’ Practice will provide an annual health check (in line with DES guidance) for those on the HC register only. The pre-requisites for taking part in the DES are as follows: • Practices will liaise with the local LD team to identify their patients with LD

38. Liaising with Primary Care: • You can see some of the issues in identifying people with learning disabilities. • For carers in Greenwich it is worth asking your local GP practice about health checks for people with learning disabilities. • Some GPs need to update their registers. Improvements with their LD information are being made.

39. Health Action Planning The DES states that: • ‘health checks should integrate with the patient’s ‘personal health record’ and ‘health action plan’ • The Department of Health has issued guidance on Health Action Planning and Health Facilitation (March 2009) • We have introduced ‘Personal Health Profiles’ or PHPs in line with the DH and DES guidance re: Health Action Plans and Personal Health Records.

40. Health Action Planning A health action plan (HAP) details: • ‘the actions needed to maintain and improve the health of an individual and any help needed to accomplish these. It is a mechanism to link the range of services and supports they need, if they are to have better health…… The plan is primarily for the person with learning disabilities and is usually co-produced with them.’

41. Health Action Plans (HAPs) • Will be offered/reviewed at: • Transition from secondary education with a process for ongoing referral; • Leaving home to move into a residential service; • Moving home from one provider to another; • Moving to an out of area placement; • Changes in health status, for example as a result of a period of out-patient care or in-patient treatment; • On retirement; - When planning transition for those living with older family carers.

42. Health Facilitation Health Facilitation is described as; ‘the process of enabling people to understand health issues and to access mainstream health services’. (Bernal 2006) The DH divide this into 2 levels: Level 1 = Service development work, informing, planning and commissioning Level 2 = Person to person work with people with learning disabilities

43. Health Checks and Health Facilitation • The aim is that Health Checks will be the 1st point of contact for the Health Action Plan (HAP) and Personal Health Profile. • Carers or those offering 1:1 support in Wadeville will be the ‘Health Facilitator’. • It is their role to support the maintenance of the HAP.

44. We recently commissioned a short film about Annual Health Checks. The film is produced by people with learning disabilities with support from a local Day Service. It explains the use of Personal Health Profiles and Health Action Plans (This model is in line with DES Requirements) – Copies are available. Health Checks for People with LD - DVD

45. Play DVD…

46. Oxleas Resources – Screen Shot Click here for the health check invitation letter

47. Completing Health Checks – A Primary care perspective • Health checks begin once the health check register has been validated. • Practices invite patients on the health check register. • Invitation letters are available on the Oxleas website • Attach the pre-health check questionnaire

48. Completing Health Checks 5. Practices will be provided with Personal Health Profiles for everyone on their HC register. 6. Practices complete the health check (observing patient’s consent and best interests) using the guideline provided and introduce the patient to the personal health profile. A copy of the DVD will be made available to each practice.

49. The Health Check: 03/12/09 150/90 GP Practice staff are required to complete the following: 03/12/09 92 03/12/09 7.2 Fill in this page… 03/12/09 120Kgs

50. The Health Check: 03/12/09 Dr Jones GP Completed Annual Health Check GP Practice staff are required to complete the following: Fill in this part…