For the past two years, a team of us at Manchester Metropolitan University have been researching end of life care for people with alcohol and other drug problems with funding from the Big Lottery Fund. This scoping study has examined the good practice and challenges experienced by health and social care practitioners, service users and families when life-shortening conditions co-exist with problematic substance use.
There were six strands of work to our project:
- A Rapid Evidence Assessment – a review of international published literature
- Identification and analysis of existing national datasets
- Interviews with people with current or past substance problems who have a life shortening condition
- Analysis of interviews from a previous project on substance use and bereavement. Interviews with family members, friends and carers
- Interviews and self-completion questionnaires for paid staff and volunteers
- Key Informant Interviews
This is a very under-researched field, and our work has revealed particular knowledge gaps around the scale and prevalence of need for individuals and their families – that have resulted in this population remaining hidden from view. Yet we know that the UK has an ageing general population (with problem drinking known to be escalating among the over 50s), which combined with awareness of the cohort of ageing heroin users in treatment, highlights the pressing nature of this issue.
From a policy perspective, despite recognition of the increasing importance of palliative care for an ageing population, little is known about how these services could best support people with substance use problems – many of whom do not access services and others who may not always be compliant with medication or health / social care regimes. This population generally experiences multiple long-term complex health and social care needs, combined with high levels of mental health difficulties and social isolation which can leave them particularly vulnerable. Quite often, reluctance to engage with services means that they rely on costly emergency hospital and ‘blue light’ services for their healthcare needs. Both for these individuals directly, but also for their families and informal carers (who frequently have long-term healthcare needs of their own), community-based approaches need to be developed to provide effective support and help prevent problems transferring down future generations.
Unfortunately, current substance use policy does not account for the needs of this group and there is no way of monitoring the extent to which palliative care reaches people with substance problems. But we are finding small pockets of developing good practice across the country and so we’re hoping that our research is the first step in helping to develop new policies and services that meet the needs of people with substance problems at the end of their lives, and also support their families/carers.
Dr Sam Wright is a research associate working in the Social Care and Social Work department of Manchester Metropolitan University. She has worked on many substance use research projects over her career: from treatment for amphetamine use; to interventions for drug using parents, to community alcohol projects; county-wide substance treatment needs assessments, to support for young people at risk of developing substance problems. Her current work focuses on end of life care needs for people with alcohol/other drug problems – as well as the support needs of their families and informal carers. Sam spoke about this project at the DAWF conference.