Hospice Care in Focus: End of life care and homelessness

One organisation working to widen access to end of life care is St Gemma’s Hospice, a Leeds-based charity providing expert care and support for local people with life-limiting and terminal illnesses. It’s the largest hospice in Yorkshire and one of the largest in the UK.

Over the past three years they have delivered a project to address end of life care for people experiencing homelessness.

In 2017, the hospice faced challenges when providing end of life care for two homeless patients. This experience raised important questions for St Gemma’s: how to support homeless patients in the future, so that they can have the choice about where they want to be at the end of their life, and have the right discussions at the right time.

Historically, people experiencing homelessness have struggled to access various health and care services, which can often be perceived as ’inflexible’. According to Nicky Hibbert, Senior Nurse Practitioner at St Gemma’s Hospice, and Project Lead, it was the reflections on this - alongside the hospice’s strategic plan, national papers from the Care Quality Commission, and Hospice UK’s policy work - which helped drive their project to improve end of life care.

Last year, hospices cared for more than 300,000 people – in hospices and in the community, too. This included almost a million ‘hospice at home’ visits. [source: Hospice UK Annual Report 2020]

However, it’s estimated that 100,000 people don’t get the care they need at the end of life. And some groups miss out more than others, including people experiencing homelessness. [source: Nuffield Report 2022]

With funding from the Masonic Charitable Foundation Grants programme via Hospice UK, St Gemma’s were able to drive the project forward. This was by necessity a collaborative effort: whilst they are palliative and end of life care specialists, they lacked specialist knowledge of health inclusion or inequalities. 

Calling on a network of local partners and people across Leeds for support and help, St Gemma’s set up a multidisciplinary steering group. This included Sue Ryder Wheatfields, Bevan Healthcare, a homeless GP practice in Leeds, Leeds Community Health, the palliative care team from Leeds Teaching Hospital Trust, and St George’s Crypt.

One of these local partners, St George’s Crypt, runs Regent Lodge (for clients with a history of homelessness and alcoholism) and Don Robins House (supporting vulnerably-housed citizens of Leeds).

With support from St Gemma’s, Don Robins House has been able to provide a home to at least three people at the end of their life, and given them the care that they needed. Tony Perkins, St George’s Crypt Team Leader, says that ordinarily, this care would have been extremely difficult to provide: 

“We're not medical people. So when someone was at the end of their life, it wasn't something we had a great deal of experience of. And to put the staff through that was not really being fair.

“That's why we needed St Gemma’s help…for all the legal bits as well, do not resuscitate…that sort of thing, we wouldn't have had a clue about." 

A particular challenge of the project was that people experiencing homelessness generally did not understand what palliative care was, and what sort of care could be given. They did not necessarily know that care is available, or how to access it. They may not have known who to talk to, so they struggle to get any support.

Until complications arose from his terminal lung cancer diagnosis, Alan, who formerly served in the army, had been living in a tent in local woods for nearly 30 years. Having been provided with council accommodation, the support from Nikki and St Gemma’s has been vital in giving him the care he needed as he enters the end of his life - something that would have been very nearly impossible had he remained living in his tent. 

Through communicating with the GP network, a poster at Hospice UK conference, presentations at district nursing conferences, plus talks with Leeds-based palliative healthcare registrars, Nicky says that the project has so far reached over 40 people. But this is just the tip of the iceberg for Nicky and her team (who also won a Nursing Times Project Team of the Year award for their work).

“We never thought we'd get to that number. And I think there's a lot more people out there who could benefit from our services: we've just got to get the word out that we're around.”

About St Gemma’s Hospice

St Gemma’s Hospice is a Leeds-based charity providing expert care and support for local people with life-limiting and terminal illnesses. They offer care to patients and their carers in the Hospice’s In-Patient Unit, through the St Gemma’s community team and via Out-Patients. St Gemma’s welcomes and provides care to everyone regardless of people’s age, gender, disability, race, religion, sexual orientation or diagnosis. Our care is always completely free of charge. 

About the Masonic Charitable Foundation Hospice Grants 

The Hospice UK and Masonic Charitable Foundation (MCF, the Freemasons' charity) grants programme is vital in supporting projects across the country. Their partnership with Hospice UK aims to support different areas of hospice care, based on what has been identified as the sector’s current needs.