Urgent reform of palliative care required for those experiencing homelessness - Ellie Wagstaff

Homelessness has traditionally been a bleak picture in Scotland over the years. This has been highlighted in recent months by National Records of Scotland figures which showed there were over 200 estimated deaths of those experiencing homelessness in 2019 in Scotland; the average age of death was just 39 for women and 43 for men.

Ellie Wagstaff is Policy and Public Affairs Manager at Marie Curie

Despite people experiencing homelessness having significantly worse health than the general population, higher death rates and complex health needs, they also have considerably poorer access to palliative and end of life care when they need it most.

In a recent Marie Curie report, co-authored with Dr Joy Rafferty (Strathcarron Hospice), we are calling for urgent reform of palliative care support for those experiencing homelessness and terminal illness.

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Many people experiencing homelessness often struggle to access the palliative care support they need because of multiple complex health issues usually comprising a combination of a physical health condition, mental health issues and substance/alcohol dependency. This significantly impacts their quality of life and ability to access the care they need when dying.

The frequent overlap between at least one of the above issues and homelessness are usually coupled with challenges faced by public sector and charitable services, where services are often to set-up to address ‘single issues’ as reported by Hard Edges Scotland in 2019.

This creates opportunities for people to fall through the cracks, and highlights the need for a collaborative approach between Local Authorities, Health and Social Care Partnerships, multi-disciplinary clinical teams, palliative care providers, homelessness support organisations (among others) to ensure the right palliative care support is accessible and reflects individual needs.

For those needing palliative and end of life care, early intervention is crucial for helping people to live as well as possible until they die. But for those experiencing homelessness, their chances of identification are significantly reduced due to multiple, complex health issues, complex trauma, with uncertainty around prognosis and usually dying young.

A large proportion of the practical and emotional support provided for people experiencing homelessness is undertaken by specialist third sector homelessness organisations and temporary accommodation providers, yet many organisations have few direct links with specialist palliative care providers, including the third sector and hospices.

As a result of inconsistent identification and engagement with palliative care services, hospices and acute settings are often engaged at crisis point. As well as being distressing for the patient themselves, it also places intense pressure on services.

Palliative care training should be made available for those delivering homelessness services to help identify people who could benefit from palliative care much earlier.

People experiencing homelessness often experience profound loss, such as a bereavement and/or the loss of many aspects of normal life. They also have repeated bereavements, and may deal with these in self-destructive ways, putting them at greater risk of loneliness, isolation, depression and suicidal thoughts.

People also working in the homelessness sector are often exposed to deaths of people in their care, sometimes in difficult circumstances which can put them at high risk of secondary trauma and burnout.

More tailored bereavement support must be developed and delivered specifically both for those experiencing homelessness, and those delivering support.

With a new Minister for Public Health now is the time for the Scottish Government to take decisive action to ensure all those experiencing homelessness and approaching the end of life get the support they need. We can not leave it any longer.

Ellie Wagstaff, Policy Manager Scotland, Marie Curie

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