For the past two years, Professor Sarah Galvani has been leading a multidisciplinary research team at Manchester Metropolitan University, exploring end of life care (EoLC) for people with alcohol and other drug problems (with funding from the Big Lottery Fund). The research 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 (SU).
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 population, with alcohol-related harm known to be escalating in older age groups. Combined with evidence of the cohort of ageing heroin users in treatment, urgent attention needs to be paid to the end of life needs of this growing group of people.
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 whose social circumstances may not always fit with traditional medication or health / social care regimes. This population generally experiences multiple, long-term, and complex health and social care needs, combined with high levels of mental health difficulties and social isolation. This combination 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 to ensure that this group of people are able to die with dignity and care.
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 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.
We are now moving forward to examine what guidance is needed to help integrate health and social care policies that better support work across the substance use and palliative/end of life care sectors. We hope to further develop this work and have recently submitted an application for further research funding to examine the whether a new model of care could improve access to, and experience of, end of life care for people with problematic substance.
Contributed by Dr Sam Wright, Senior Research Associate at Manchester Metropolitan University.