What do we know

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Below are some headline messages from our research along with a summary report that can be downloaded. Briefings, full final reports and other resources for the projects can be found in subsequent pages on this website:

  1. There is a dearth of research evidence in general and no evidence that identifies effective interventions or models of practice for this group of people.
  2. People with a history of problematic substance use needing end of life care cannot currently be identified directly from existing datasets for audit and care quality purposes. This means we have no current knowledge of the scale of these overlapping issues.
  3. Most of this population will have complex and multiple physical, psychological and social difficulties that negatively impact upon their identification, engagement and care.
  4. Self-stigma and the anticipation of discrimination from practitioners can stop people from presenting to services or people will present at a very late stage.
  5. Family members’ support needs are often overlooked including a lack of communication from practitioners about their relative’s approaching end of life.
  6. Professionals identified many challenges to working with this group of people, including how to talk about the ‘other’ issue and working with other specialists.
  7. The picture was not completely gloomy! There were examples of individual good practice and organisations that were seeking to actively improve their service provision to support this group of people.

Download report here: What we know and what we need to know