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The Learning Disabilities Mortality Review (LeDeR) programme

The Learning Disabilities Mortality Review (LeDeR) programme. 1. Covered in this presentation. Information about the Learning Disability Mortality Review (LeDeR) programme Overview of LeDeR methodology Key findings to December 2017 Contact details and additional sources of information. 2.

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The Learning Disabilities Mortality Review (LeDeR) programme

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  1. The Learning Disabilities Mortality Review (LeDeR) programme 1

  2. Covered in this presentation • Information about the Learning Disability Mortality Review (LeDeR) programme • Overview of LeDeR methodology • Key findings to December 2017 • Contact details and additional sources of information 2

  3. Introduction to the Learning Disability Mortality Review (LeDeR) programme

  4. Background • Department of Health (2001) Valuing People • Mencap (2004) Treat me right • Mencap (2007) Death by Indifference • Michael (2008) Healthcare for All • Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) (2013) • Mazars report (2015) • Each of these reports has documented the failures of health and social care services to comply with equalities legislation, and has highlighted widespread poor healthcare provision for people with learning disabilities. 4

  5. Report from sister of a person with learning disabilities who had died The doctor came out on the Friday before she died and said he thought that she had a water infection. He said that he could either give her antibiotics or leave it. I mean what did he mean by that…leave it? (CIPOLD, 2013) 5

  6. What we know about deaths of adults with learning disabilities • Early deaths of people with learning disabilities: a 20+ year disparity (CIPOLD and GPES data) • Increasing median age at death over time but little evidence of any closing of the gap in life expectancy between people with learning disabilities and the general population.

  7. Avoidable deaths (from CIPOLD, 2013) Amenable mortality: All or most deaths from that cause could be avoided through good quality healthcare 13% (general population) 36.5% (learning disabilities) Preventable mortality All or most deaths from that cause could be avoided by public health interventions in the broadest sense 21% 21%

  8. LeDeR programme purpose of local reviews of deaths To help health and social care professionals and policy makers to: • Identify the potentially avoidable contributory factors related to deaths of people with learning disabilities • Develop action plans to make any necessary changes to health and social care service delivery for people with learning disabilities 8

  9. LeDeR methodology 9

  10. Key findings to December 2017 10

  11. Findings: Demographic and other details (July 2016 – Nov 2017) • Males 57%; females 43% (n=1,311) • White ethnic background 93% (n=1,145) • Usually lived alone 9% (n=1,158) • Had been in an out-of-area placement 9% (n=1,158) • Died in hospital 64%, compared with 47% in the general population (n=1,244). 11

  12. Findings: age at death • Median age at death 58 years • (range 4-97 years) (n=958) • males – 59 years • females – 56 years • Over a quarter (28%) of deaths were of people aged under 50 years –compared with 5% in the general population of England and Wales aged four years and over who died in 2016. 12

  13. Findings: cause of death • Most common individual causes of death (n=576) • Pneumonia 16% • Sepsis 11% • Aspiration pneumonia 9% • Most common underlying causes of death • Diseases of respiratory system: 31% • Diseases of circulatory system: 16% • Neoplasms (cancer): 10% 13

  14. Findings: learning identified • The most commonly reported learning and recommendations were made in relation to the need for: • Greater inter-agency collaboration, including communication • Greater awareness of the needs of people with learning disabilities • Greater understanding and application of the Mental Capacity Act (MCA) 14

  15. From learning to action We need to address the learning from individual deaths. Learning points at individual level should be taken forward into relevant service improvements as appropriate. Recommendations made by the LeDeR programme are in the 2016/17 annual report http://www.bristol.ac.uk/sps/leder/news/2018/leder-annual-report-2016-2017.html 15

  16. What can you do now? Make contact with your local Steering Group and make sure that you are engaged with them Support staff to notify deaths to the LeDeR programme Support staff to contribute to reviews of deaths Support staff to be trained as a reviewer and to lead reviews Ensure that any learning and recommendations relevant to your services are being acted upon 16

  17. Contact details LeDeR Bristol: leder-team@bristol.ac.uk Tel: 0117 3310686 Website: www.bristol.ac.uk/sps/leder Regional Coordinators North Maria Foster Maria.Foster2@nhs.net Midlands and East Louisa WhaitLouisa.Whait@nhs.net South Robert TunmoreR.Tunmore@nhs.net London Emily Handley Emily,Handley2@nhs.net 17

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