People with serious mental illness or addiction issues

What the evidence shows

For the purposes of this report, we have grouped together those experiencing addiction or serious mental illness, as these groups can intersect and have many similar barriers and issues relating to accessing services.

People experiencing addiction or serious mental illness often face additional socioeconomic challenges such as homelessness, unemployment, or lack of access to healthcare. They may have experienced trauma or abuse and may be estranged from friends and family. These disparities can further impede access to quality end-of-life care services and contribute to overall poorer health outcomes.

Often, individuals with addiction or serious mental illness have complex care needs requiring specialised expertise. However, healthcare systems may lack integrated services or skills capable of addressing both physical and psychological aspects of end-of-life care for this population. End-of-life care for individuals experiencing addiction or serious mental illness is often marked by inequalities and challenges stemming from stigma, limited resources, and systemic barriers within healthcare systems. Alternatively, individuals may resist health or social care for fear of being judged or stigmatised by professionals involved in their care. The stigma surrounding addiction and serious mental illness can influence treatment decisions, including access to palliative care services.

Individuals with addiction or serious mental illness may experience chaotic lifestyles and find it difficult to plan or think longer term. For those who are less able to confidently think about their future, this impacts all aspects of life including housing, employment, and financial security. Towards the end-of-life this may make it more difficult to effectively undertake Advance Care Planning and initiate those earlier conversations about preferences around death and end-of-life care. Taking regular medication may be a challenge resulting in less effective treatment and challenges to effectively manage pain. Some medications may interact with drugs or alcohol if the individual is still using substances, whilst those with a history of substance misuse may resist opioid-based medication altogether for fear of relapse.

What Kirklees organisations told us

Access to healthcare generally can be difficult for people with serious mental illness or addiction issues, who can experience barriers to making or attending appointments.

There are some good examples of strong partnerships working to tackle barriers to access; in particular between the drug and alcohol treatment provider, Change Grow Live. The providers have developed a two-way referral process to support people with addiction issues who have been diagnosed with a life-limiting condition.

Within Kirklees there is work underway to ensure that the nursing team at Change Grow Live are linked in with the nursing team at The Kirkwood and that there is a joint approach in terms of how prescribing is managed and what other interventions might need to be put in place from a clinical perspective.

Unmet needs for those not engaged in services

It was acknowledged that these joined up pathways are only beneficial for people who are already engaged with services, either within treatment services, or under hospice care. For many of the population who have unmet need around problematic drug or alcohol use, it is less likely that they would access this service.

They're only going to get picked up if they come to a service like ourselves, and there's quite a large cohort of people within the Kirklees area that we're aware of that still aren't accessing services... I guess the concern is those that aren't accessing services like ours really.

Challenging misconceptions and awareness-raising

There was also some discussion around perceptions of palliative care as focused purely on dying, rather than quality of life and living well at the end-of-life.

I think there's a fear factor around if you mention anything to do with maybe palliative care or end-of-life, but it doesn't always mean necessarily end-of-life. Now I think it's that key messaging that people don't just see it as, 'oh, gosh, this is it'. It's not. That's about your quality of life.

There is work ongoing to promote the offer amongst the primary and secondary care workforce to raise awareness and encourage referrals. It was suggested that there was a need for training both for mental health staff in palliative care support pathways and palliative care staff in mental health support.

Pressures on services

Services are under significant pressure which has an additional impact on access, especially for those who are more vulnerable. This includes long waiting lists for bereavement support, which can be particularly damaging for people who are bereaved, especially where the death was sudden and/or unexpected.

Recommendations

• Raise awareness and promote what support services are available to Kirklees residents and the healthcare workforce.
• Improve resource to enable prompt access to bereavement support.
• Work with primary care to establish safe and effective medication combinations.
• Strengthen and support pathways between patients and providers such as CGL and SWYFT (South West Yorkshire Partnership NHS Foundation Trust).