Our Research

Our research was inspired by practitioners’ concerns about improving end of life care for people using substances, their families, friends and carers.

The first project (funded by the National Lottery Community Fund (2016 – 2018) was the first of its kind to explore the experiences of people approaching the end of their lives, professionals in substance use and hospice services, family, friends and carers, and experts from across the UK. It comprised:

  • A review of published national and international research evidence (full report).
  • Interviews with key informants working in policy or practice whose work covered the overlap between substance use and end of life care (full report).
  • A review of national datasets to help determine the scale of the issue (full report).
  • Interviews with people with lived experience who have/ had substance problems and are approaching the end of their life (full report).
  • Interviews with families and carers of people with substance problems who are approaching the end of their life or have died (full reports part 1 and part 2).
  • Surveys and interviews with hospice and substance use service practitioners to gauge their experience of working with this client group, the challenges they face, and collate examples of good practice (full report). 

N.B. The links in the list above take you to the Briefing reports only. Click in the brackets for the full reports.

In addition to an overview report, it also led to the the publication of good practice guidance focussing on palliative and end-of-life care for people using substances, the first of its kind. 

The second project was funded by a Chancellor’s Fellowship Award from Manchester Metropolitan University. It enabled us to continue our work with a specific focus on policy development. Following consultation with a large group of professionals in the City of Liverpool, Merseyside, the team produced the first-ever policy standards document focussed on supporting people at or near the end of their lives who use substances.

The third project has been funded by the National Institute for Health Research, specifically its Social Care grant. It builds on the findings from the first two projects and aims to develop a model of care for people using substances at or near the end of their lives.  We are working with social care and health agencies from the voluntary and statutory sectors across Liverpool, Merseyside, and Southport and Sefton areas. These include social work teams, hospices, housing charities, substance use specialists, community end of life care teams, specialist GP services and our community voice partner organisation, VoiceBox Inc. This project runs from 2019 to 2022 and any findings and related material will be shared on this website.

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