Improving palliative care within homelessness

The Museum of Homelessness estimates that 1,313 people experiencing homelessness died in 2022.1 But, like many other figures on this topic, it's only an estimate.

Many people experiencing homelessness live on the edges of our society and, as a result, often face many challenges in accessing healthcare services. If they contact services, many of these places aren't set up to consider their needs or, if the services want to help, they don't know how. Plus, prioritising your health can be difficult if you're experiencing homelessness and are focused on your daily needs. Many of those who are unwell approach services only when they reach crisis point, if at all.

Experiencing traumatic events early in life, as many people experiencing homelessness do, can influence how you see the world, your mental health, and coping mechanisms. This can contribute to the route into homelessness and a route out of getting the right end of life care.

So how can professionals change this? And what work have we been doing to uncover the hidden issues and improve services, support and care?

Health issues at the end of life for people experiencing homelessness can be complex. Often illness that are usually seen in older people occur at a much young age and healthcare needs are identified at a later stage. Hostels, where staff often have little health training but are increasingly looking after people with complex needs, are often ill-equipped to help.

To aid hostels in supporting people experiencing homelessness, we've produced a toolkit for homelessness services and health and palliative care teams to identify need and improve care.

Hostels are typically set up to primarily help find employment or stable housing. That's why connections with health and social care professionals and services are so important, to support changing the message people experiencing homelessness receive from, 'This is the end of your life' to 'How can we help you live well for as long as possible?'.

Once these connections are made, they need to work together. While agencies and palliative care professionals have their own expertise, hostel staff may have a greater understanding of people's daily experiences. Using the expertise of both is crucial to get the best outcomes.

And the toolkit isn't exclusive to hostels. Though developed for hostel staff, it's been used by many other professionals, highlighting not just the need for this support but also people's willingness to help.

Everyone's experience of homelessness is different. Recognising this is important to make sure everyone gets the unique support they need.

It's important to recognise this in research too. In our TIFFIN report, we set out recommendations for how to co-produce palliative and end of life care research alongside people with lived experience of homelessness in a way that's safe, supportive and beneficial for everyone.

We interviewed palliative care professionals, academic researchers, frontline homelessness staff, and people with lived experience of homelessness who've co-produced palliative and end of life care research before.

Central to the recommendations is collaboration with partner organisations and those who already have trusting relationships with people experiencing homelessness to provide continuous support for them. Collaboration, support and recognising the expertise that other people bring is fundamental. For more information, read the research paper on the TIFFIN recommendations.

Disconnection between different groups of professionals is one of the biggest issues preventing people experiencing homelessness from getting the care they need.

Supporting people experiencing homelessness with palliative care needs is complicated and requires input from a range of services, from hostel staff to social services, to understand their role in supporting people, how they can work together, and what the benefit might be.

The National Homelessness and Palliative Care Network, run by Marie Curie in partnership with Pathway is an online space for people across the UK to share their experiences, make new connections with people in their area and share best practice on palliative care and homelessness.

Similarly, the IMPROVE intervention provides the resources needed to set up and run online communities of practice in local areas for mixed professional groups. It includes an online platform with videos and sessions on a range of topics, from the impact of complex trauma to mental capacity and bereavement.

While the palliative care and homelessness network works nationally, IMPROVE aims to bring together local champions to find people in their area they need to connect with, to make a real change.

Though there are challenges, it's possible to support people experiencing homelessness with palliative care needs. We've seen it for ourselves: where people are passionate, they're able to make a real difference. So how can professionals do this?

Professionals can benefit from getting out into communities and engaging with people: find out what and where the needs are in their community are and foster relationships with people who need support, and other professionals. Using the national homelessness and palliative careECHO network and IMPROVE intervention can help you make local connections and show organisations the benefit of multi-disciplinary working.

Providing support can be resource-intensive, so helping teams to understand how the time and effort needed to support what can be a small number of people is important. If professionals are struggling to convince managers to do this work, short films like Less and Homelessness and palliative care – the film show the impact of what's happening while emphasising that palliative care should support everyone, regardless of their living situation.

There's no question that Marie Curie is committed to ending inequity in palliative care. But to truly do this for everybody means thinking about those who fall between the gaps too.

Palliative care needs for people experiencing homelessness is a complex issue. To make a real difference, people with different expertise – hostels, social services, drug and alcohol services, palliative care professionals – need to come together to manage that complexity and help people have a better end of life experience.

Improving end of life care for people experiencing homelessness is hard and complicated. But the will it is there.

Visit Marie Curie's homelessness and palliative care hub for resources and information on palliative care for people experiencing homelessness in your area.