1. Confidential Inquiry into the deaths of people with learning disabilities Lesley Russ Lead Nurse

2. Background Origins in the campaigning work of Mencap The Michael report recommended a time- limited Confidential Inquiry to assess the extent of premature deaths and make recommendations

3. Research Study Information Commissioned by DoH in 2010 (IHAL) 3 year study: Led by Norah Fry Research Centre Full research governance clearance Multi layer research design

4. Number of reviews We reviewed : All known deaths of people with learning disabilities From 5 PCT areas From 1 st June 2010 – 31 st May 2012. 233 adults with learning disabilities 14 children with learning disabilities 58 comparator cases.

5. The cohort of people with learning disabilities Age 4-96. Over half (58%) male. Most (93%) single. Most (96%) White British. 40% had mild learning disabilities 31% moderate learning disabilities 21% severe learning disabilities 8% had profound and multiple learning disabilities.

6. Age at death Median age at death for males was 65 years Men with learning disabilities died on average 13 years earlier than men in the general population. Median age at death for women was 63 years Women with learning disabilities died on average 20 years earlier than women in the general population.

7. Causes of death Immediate cause of death Underlying cause of death Any other diseases, injuries, conditions or events that contributed to the death, but were not part of the direct sequence leading up to the death.

8. Immediate causes of death The most common immediate causes of death in people with learning disabilities were: respiratory problems (34%) heart and circulatory disorders (21%).

9. Underlying causes of death The most common underlying reasons for people with learning disabilities dying were: heart and circulatory disorders (22%) cancer (20%).

10. Involvement of coroners Fewer deaths of people with learning disabilities reported to a coroner (38% compared with 46% nationally). More people with learning disabilities had a post- mortem (90% of those reported to a coroner, compared with 44% nationally). No significant difference in proportion for whom an inquest was opened (17% compared with 13% nationally).

11. Unexpected deaths Using ICD-10 codes of underlying causes of death that can be assumed to cause an unexpected death 25% nationally 23% in CIPOLD deaths

12. Avoidable deaths Amenable mortality: All or most deaths from that cause could be avoided through good quality healthcare. 27.5% Preventable mortality All or most deaths from that cause could be avoided by public health interventions in the broadest sense. 12% 9%

13. Deaths amenable to good quality healthcare Significance of: age severity of learning disabilities underlying cause of death if had a significant partner/friend.

14. The comparator study Potentially avoidable deaths %

15. Premature deaths CIPOLD deaths were considered to be premature ‘if, without a specific event that formed part of the ‘pathway’ that led to death, it was probable (i.e. more likely than not) that the person would have continued to live for at least one more year.’

16. Premature deaths 42% of deaths considered to be premature Younger people more likely to have premature death

17. Most common reasons for premature deaths (1) Problems with assessing or investigating the cause of illness. This affected 2 in every 5 people.

18. Most common problems with diagnosis Type of problem with diagnosis% Problems with the investigations40 Died with undiagnosed significant illness33 Concerns of person, family or paid carers not taken seriously enough 25 Problems with referral to specialist19

19. Most common reasons for premature deaths (2) Problems with the treatment of their condition. This affected 2 in every 5 people.

20. Most common problems with treatment Type of problem with treatments% Problem with giving and receiving treatment 47 Problem with treatment itself 31 No treatment given 31

21. Issues related to the delays in the care pathways A lack of reasonable adjustments to help people to access healthcare services. A lack of coordination of care across and between different disease pathways and service providers. A lack of effective advocacy for people with multiple conditions and vulnerabilities.

22. Contributory factors Mental Capacity Act Resuscitation guidelines Record keeping Lack of proactive care:  Fear of contact  Forward planning  Postural care  Hospital discharge problems  Planning for transition  Long-term condition care plans

23. The comparator study Particular problems identified for people with learning disabilities (all more common than for comparators): Problems with advanced health and care planning. Problems with coordination of care and information sharing. Problems with recognising needs and adjusting care as needs changed. Problems with record keeping and accessing records.

24. The comparator study Particular problems identified for people with learning disabilities (all more common than for comparators) : Problems with the Mental Capacity Act being followed Delays in the diagnosis and treatment of health care problems

25. The comparator study Problems commonly experienced by both groups: Problems with DNACPR orders Problems with end of life care End of Life Plan

26. Recommendation 1 of 18 Clear and consistent recording and identification of people with learning disabilities across all healthcare record systems.

27. Recommendation 2 of 18 Reasonable Adjustments required by, and provided to individuals, to be audited annually and examples of best practice to be shared across agencies and organisations.

28. Recommendation 3 of 18 NICE Guidelines to take into account multi- morbidity.

29. Recommendations 4 of 18 A named healthcare coordinator to be allocated to people with complex or multiple health needs, or two or more long- term conditions.

30. Recommendation 5 of 18 Patient-held health records to be introduced and given to all patients with learning disabilities who have multiple health conditions.

31. Recommendation 6 of 18 Standardisation of Annual Health Checks and a clear pathway between Annual Health Checks and Health Action Plans.

32. Recommendation 7 of 18 People with learning disabilities to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently to achieve the same outcome.

33. Recommendation 8 of 18 Barriers in individuals’ access to healthcare to be addressed by proactive referral to specialist learning disability services.

34. Recommendation 9 of 18 Adults with learning disabilities to be considered a high-risk group for deaths from respiratory problems.

35. Recommendation 10 of 18 Mental Capacity Act advice to be easily available 24 hours a day.

36. Recommendation 11 of 18 The definition of Serious Medical Treatment and what this means in practice to be clarified.

37. Recommendation 12 of 18 Mental Capacity Act training and regular updates to be mandatory for staff involved in the delivery of health or social care. MCA

38. Recommendation 13 of 18 Do Not Attempt Cardiopulmonary Resuscitation Guidelines to be more clearly defined and standardised across England.

39. Recommendation 14 of 18 Advanced health and care planning to be prioritised. Commissioning processes to take this into account, and be flexible and responsive to change.

40. Recommendation 15 of 18 All decisions that a person with learning disabilities is to receive palliative care only should be supported by the framework of the Mental Capacity Act and the person referred to a specialist palliative care team. End of Life Plan

41. Recommendation 16 of 18 Improved systems in place nationally for the collection of standardised mortality data about people with learning disabilities.

42. Recommendation 17 of 18 Systems in place to ensure that local learning disability mortality data is analysed and published on population profiles and Joint Strategic Needs Assessments.

43. Recommendation 18 of 18 Establishment of a National Learning Disability Mortality Review Body.

44. Time for questions Final and Easy Read reports available at www.bristol.ac.uk/CIPOLD