1. Confidential Inquiry into the deaths of people with learning disabilities Dr Pauline Heslop Manager of the Confidential Inquiry Senior Research Fellow

2. 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.

3. 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.

4. 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.

5. 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%).

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

7. 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

8. Total avoidable deaths

9. 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%

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

11. 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.

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

13. Most common reasons for premature deaths Problems with assessing or investigating the cause of illness. This affected 41% of those whose illness was reported to a medical practitioner. Problems with treating a persons illness. This affected 42% of those diagnosed with an illness.

14. 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.

15. Contributory Factors Lack of assessment Best Interests decisions: delays lead recording Use of IMCAs: serious medical treatment Timeliness of decisions Value of the Mental Capacity Act Mental Capacity Act

16. Contributory factors Do Not Attempt Cardiopulmonary Resuscitation orders Poor record keeping Lack of proactive care: Fear of contact Forward planning Postural care Hospital discharge problems Planning for transition Long-term condition care plans

17. Comparator study A subgroup of 58 people with learning disabilities compared with 58 people without learning disabilities

18. 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. Problems with the Mental Capacity Act being followed. Delays in the diagnosis and treatment of health problems.

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

20. Recommendations Clear and consistent recording and identification of people with learning disabilities across all heath record systems. Reasonable adjustments identified, recorded and audited.

21. Recommendations NICE Guidelines to take into account multi-morbidity.

22. Recommendations A named healthcare coordinator to be allocated to people with complex or multiple health needs, or two or more long-term conditions. Patient-held health records to be introduced and given to all patients with learning disabilities who have multiple health conditions.

23. Recommendations Standardisation of Annual Health Checks and a clear pathway between Annual Health Checks and Health Action Plans.

24. Recommendations 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. Barriers in individuals access to healthcare to be addressed by proactive referral to specialist learning disability services.

25. Recommendations Adults with learning disabilities to be considered a high-risk group for deaths from respiratory problems.

26. Recommendations Mental Capacity Act advice to be easily available 24 hours a day. The definition of Serious Medical Treatment and what this means in practice to be clarified. Mental Capacity Act training and regular updates to be mandatory for staff involved in the delivery of health or social care.

27. Recommendations Do Not Attempt Cardiopulmonary Resuscitation Guidelines to be more clearly defined and standardised across England.

28. Recommendations Advanced health and care planning to be prioritised. Commissioning processes to take this into account, and be flexible and responsive to change. 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.

29. Recommendations Improved systems in place nationally for the collection of standardised mortality data about people with learning disabilities. Systems in place to ensure that local learning disability mortality data is analysed and published on population profiles and Joint Strategic Needs Assessments. Establishment of a National Learning Disability Mortality Review Body.

30. Department of Health response Published in July 2013 DH is committed to addressing the issues identified Criticised for a lack of detail Ongoing discussions between the DH, NHS England and the CI team Joint conference in Spring 2014 to share progress

31. Contact details www.bristol.ac.uk/cipold 0117 331 0973 or 0117 331 0980 Ci-team@bristol.ac.uk