While the development of palliative and end of life care for the UK’s ageing population is recognised as a policy priority, little is known about how such services can best support people with substance use problems, or how substance use services can support people with serious and life limiting conditions.
This population generally experiences multiple, long-term, and complex health and social care needs. Combined with mental health difficulties and social isolation, this constellation of needs leaves them particularly vulnerable to exclusion from care services. Quite often, people with problematic substance use are reluctant to engage with services for fear of stigma and negative attitudes, meaning they rely on costly emergency hospital and ‘blue light’ services for their healthcare needs.
Having an alcohol or other drug problem is often considered shameful, and both the individuals themselves and their families may find it difficult to judge whether it is ‘a problem’ and if so, what can be done. Families can face huge emotional strain, practical difficulties and high levels of stress as a result of a relative’s problematic alcohol or drug use. They can feel at a loss about what to do for the best and struggle on until their relative experiences a severe health problem and is admitted to emergency care.
Both for these individuals directly, but also for the families, friends and carers at the frontline of providing their care, community-based approaches need to be available to provide effective support for the person themselves and for their families, friends and carers.
The current policy context has not yet considered these overlapping issues. Substance use policy does not consider the needs of people with life-shortening conditions and palliative and end of life care policy does not consider people with alcohol/other drug problems. This is a critical gap in policy and contributes to the gap in service provision. As our population ages, lives longer with more complex health needs, and presents with higher levels of substance-related harm, there is clearly a need to fill the policy and practice gaps. This project starts to explore what we know, what we don’t know and what could be done.