Learning from deaths: Experiences of BAME people with learning disabilities

Learning from deaths: Experiences of BAME people with learning disabilities

The fourth annual report of the Learning Disability and Mortality Review (LeDeR) identified a number of examples of better practice and the factors that contribute to it, but continued to detail the comparatively poorer outcomes for people with learning disabilities in comparison to the wider population. It once again highlighted that Black, Asian and minority ethnic (BAME) people with learning disabilities are likely to die significantly younger than their White counterparts. As a result of this evidence, the LeDeR annual report recommended  that NHS England and Department of Health and Social Care ‘ensure a continued focus on BAME  deaths of all adults and children within, but not limited to, the LeDeR programme’.

We are working with NHSE, Bristol University and Learning Disability England to help NHSE/I to:

  • better understand the evidence as to which BAME communities are disproportionately affected  and the reasons why;
  • identify and understand what actions will help improve experiences and outcomes;
  • identify the steps that need to be taken to replicate better practice across local health and social care systems; and
  • identify system issues needing consideration to remove barriers.

Outputs

To help achieve change in the experience and outcomes for BAME people with learning disabilities, we plan to produce:

  • a detailed literature and evidence review with an accompanying easy read summary;
  • a detailed literature and evidence review with an accompanying easy read summary;
  • a web-based guide to better practice in supporting BAME people with learning disabilities for advocacy and VCSE organisations;
  • a map of local and national BAME and mainstream family support groups;
  • a set of resources that can be used in supporting BAME families better;
  • an agreement with NHS England and Improvement for regular reporting of use of services by BAME people with learning disabilities.
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