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Opinion

There are challenges when caring for a homeless person in palliative care – but there’s hope too

Briony Hudson, of Marie Curie, writes about why it is so difficult for people facing homelessness to access quality palliative care – but she says that there is hope for change too

Last month, stark figures from the Museum of Homelessness revealed that 1,611 people died while homeless last year in the UK – a figure that has jumped up by 9% since last year.  

Sadly, we know that the majority of these people will not have received the end of life support they so desperately needed.

Everyone, regardless of where they sleep, has a right to high-quality care at the end of their lives. Without facing barriers like stigma, prejudice and other systemic issues that can make it near-impossible to access support.

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Many of us have found it harder to get a GP appointment over the last few years. But what if even registering for a GP (absolutely vital in getting any referrals) becomes an insurmountable obstacle because you don’t have an ID, or a stable postcode to call home? While GPs can register people without ID, lack of ID is still often a roadblock to getting an appointment.    

Throw complex, chronic health conditions into the picture, as well as trauma, battles with addiction, and people being trapped in a cycle of poverty and temporary accommodation, and it’s no wonder that we see vast inequity in end of life care for homeless people. Our own experience and research have shown people experiencing homelessness are often ‘old before their time’ and have more health problems than the general population.  

According to the Office of National Statistics, the average age of death for people who are homeless or using emergency night shelters, is much younger than the general population. In England and Wales, the average age of death for homeless women is 43. For homeless men, it is 45. This isn’t even the full picture – data around deaths of people experiencing homelessness is notoriously difficult to capture accurately, and these figures don’t include people who are experiencing other types of homelessness, such as sofa surfing or living in unstable accommodation. 

Demand for palliative care is rising, putting increasing pressure on services. There are 5.75 million deaths projected in the next decade in the general population, and more than five million people set to need palliative care. And yet at present, we don’t have a national delivery plan for palliative and end of life care. We’ve repeatedly called on the government to put this plan in place in all urgency, as well as a full assessment of palliative care in the UK, so we have a better understanding of what and where the gaps are, and how we need to address them.  

This will help us in turn to tackle inequalities and ensure that everyone, no matter who they are or where they live, has access to the best possible end of life care. Critically, the government’s plan must also address the significant financial pressure that palliative and end of life care services across the UK are facing, our own charity included.  

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This may sound like a hopeless case, but there is light at the end of the tunnel. Based on our own, qualitative research, we have developed a toolkit for people who are working at the sharp end – hostel and shelter staff – helping them to spot that somebody’s health might be deteriorating, and providing guidance on how to care for and support them. 

Using networks we’ve set up like the Homelessness and Palliative Care Network, we are bringing together social care staff, GPs, drug and alcohol teams; lots of different people who all need to be involved in vital conversations about people’s care. 

We’ve been working hard to raise awareness that people who are homeless often die from diseases that are unpredictable, and their access to healthcare services is very different. They’ve likely had previous experiences that cause them to distrust medical services, feeling that they’ve not been listened to in the past, stigmatised, and that their wishes will not be taken into account.  

More likely than not, people who are dealing with homelessness have also dealt with a traumatic past and childhood. We want to advocate for choices about places of care, and death, regardless of whether someone has a stable address, or not.  It’s about giving people the choice and bringing care and support to the places where it’s needed most.

We’ve also recognised that hospices and palliative care teams don’t necessarily have a lot of experience working with people who are homeless, and that these kind of challenges around social issues and housing aren’t always something that palliative care can, and should, try and solve on their own. 

Of course more needs to be done. Too much of the social care, mental health services and palliative care system is reliant on charities, and charitable giving, to continue to do their important work. We urgently need government to step up and put a delivery plan in place to make sure everyone who needs it has access to care in their final months and weeks. 

Palliative and end of life care can’t be one size fits all, by its very nature. But by working closely together, and with the right government support and political will, there is hope.   

Briony Hudson is associate director of internal research development at Marie Curie.

Do you have a story to tell or opinions to share about this? Get in touch and tell us more

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