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).
- A report on the work of our PWAG (people with experience advisory group) and the process of involvement in the research.
- A collection of 12 digital podcasts, Insider Insights, providing examples of peoples’ experiences of living with serious and advancing ill health and substance use, as well as the experiences of those who care for them.
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 was funded by the National Institute for Health Research, specifically its Social Care grant. The team comprised academic researchers and people with lived experience (led by VoiceBox Inc.) and a range of practice partners from social and health care in Liverpool and Sefton. The project built on the findings from the first two projects and developed a model of care for people using substances at or near the end of their lives. These included social work teams, hospices, housing charities, substance use specialists, community palliative and end-of-life care teams, and specialist GP services. Click on the following links for the executive summary of the research findings or the full report. A range of resources are available within the pages of this website to help support people who are ill, their families, friends and carers, and practitioners from social and health care. We hope you find them helpful.