This website offers resources developed from a two year research programme on end of life care for people with alcohol and other drug problems. Funded by the Big Lottery Fund between 2016 and 2018, the research programme was the first of its kind to explore current practice and service experience from a range of perspectives.
Inspired by practitioners’ concerns about improving the end of life care offered to people with problematic substance use, and their families, friends and carers, Professor Sarah Galvani and a team of researchers set about uncovering what is known about these issues.
The team worked with three hospices and two substance use services across the North West and Midlands regions of England, a regional community voices organisation, a project advisory group (comprising regional service commissioners; national charities and key people working in this field), and also an advisory group of people with experience (PWEs) who had either substance use difficulties or had been involved in end of life care.
The research examined current knowledge and practice from a range of perspectives, including:
- A review of 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 that might help determine the scale of the issue.
- Interviews with people who have/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.
The findings from this diverse range of activity have been used to develop the information and resources presented here.