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 and 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 also comprised:

  • Published national and international research evidence.
  • Interviews with key informants working in policy or practice whose work covered the overlap between substance use and end of life care.
  • A review of national datasets might help determine the scale of the issue.
  • Interviews with people who have/ had substance problems and are approaching the end of their life.
  • Interviews with families and carers of people with substance problems who are approaching the end of their life or have died.
  • 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.
  • A review of national datasets might help determine the scale of the issue.

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 grants. 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.

Doing our research

Doing our research

Information on how we did the research including working with our PEAT (people with experience advisory team).

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Good Practice Guide

This good practice guidance draws from a range of sources including international research evidence, the experiences of people who use(d) substances who are at the end of their lives, and the family members, friends and carers of those people. It also draws on professionals’ experiences including paid and volunteer professionals who work with people in a range of settings including hospices, community health and social care services, substance use services, as well as specialists leading work in this area within their own disciplines, for example, general practice medicine, hepatology, social work.

Policy Standards

This policy document is designed to create greater understanding for a group of people who are as entitled as any citizen to sympathetic and expert care, particularly when they are dying. It is designed to help all those people of goodwill in the NHS, social and other health care services, who want to answer the call of every patient who is in need.

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