New research reveals that homeless people who are terminally ill are falling between cracks in services, and not able to access the same level of support as others.

Researchers from Marie Curie Palliative Care Research Department at University College London (UCL), Pathway, St Mungo’s and Coordinate My Care worked with homeless people and care professionals and found that many homeless people who may be approaching the end of their lives are living in homeless hostels.

The study is the largest of its kind and the first to describe the lack of appropriate services for homeless people in the UK, from the perspectives of homeless people and those supporting them.

It showed that hostel staff often end up caring for some of the sickest homeless people, despite not having the palliative care training or support to do so. As a result, huge burdens are placed on hostel staff who do their best to manage with minimal support and very limited resources.

One hostel staff member commented:

“At least three times a shift we check she’s okay. It’s hard … particularly on weekends and nights when we only have two staff … it’s a big hostel … you really can only do so much … this isn’t an appropriate environment, but it’s the best we have”

Dr Caroline Shulman, Pathway and Marie Curie Palliative Care Research Department, UCL, who led the research, said:

Hostels provide temporary accommodation. They are not designed to meet the needs of seriously or terminally ill residents. Hostel staff often struggle to secure additional support from social services or palliative care services for their residents who have complex problems.”

Many homeless people die young from conditions such as advanced liver disease, often complicated by mental health problems and/or drug and alcohol issues. There are differences in the type and amount of support available for this group across London, with some innovative attempts to deal with this extremely challenging problem. However the researchers found that overall, homeless people with advanced ill health rarely receive adequate care and support in the community. This results in repeated unplanned and emergency hospital admissions in the last months, weeks or days of life, which can be very distressing.

One of the participants with experience of homelessness commented:

There’s been a few guys that were in hospital, told they were dying …. They didn’t want to go to any hospice, they didn’t want to … stay in hospital, they wanted to die in the homeless hostel

The research calls for urgent action to improve collaboration between health, housing, social services and the voluntary sector, with extra support for hostel staff. It also makes recommendations for a specialist health hostel, with staff that not only understand the complex needs of homeless people but can also offer adequate 24-hour support for people with serious illnesses, including those who are dying.

As one of the hostel residents observed:

You’ve got to walk past those people. They half block the stairwell, you have to edge your way past. It’s kind of … in your face. Erm, yeah, it becomes part of the furniture. But it disturbs me as a person…

Professor Steve Field, Chief Inspector of General Practice at the Care Quality Commission, said:

As a GP I have seen how the lack of appropriate and sensitive services can mean that homeless people are denied the compassionate healthcare, dignity and respect that they deserve at the end of their lives.

This research makes it clear that by working together, healthcare services and the wider system – such as housing, social services and the charity sector – have a vital role to play in improving the quality and co-ordination of care for homeless people as they reach the end of life. Everyone has the right to safe, high-quality, and compassionate health and social care. Through our inspections we have seen services that are providing outstanding care to people who do not have secure housing but it takes strong, responsive leadership and dedicated staff.

In the coming months CQC will be publishing a detailed report making recommendations on how we as a society can meet our responsibility to the most vulnerable people in our communities who are currently being let down at a time when they need help and support the most.

Alex Bax, Chief Executive at Pathway, said:

Pathway is delighted to support this ground breaking research. We knew that homeless people’s experience of care at the end of their lives was often poor, but this new study shows how all parts of the system working together could make things much, much better. The voices of homeless people and the staff who work with them come through loud and clear. Towards the end of life everyone wants to be treated with dignity, respect, kindness and compassion. And homeless people are no different.

The research, published in the journal Palliative Medicine, was funded by the Oak Foundation and supported by Marie Curie, Pathway and Coordinate My Care.

Homeless & Inclusion Health 2018

The issues discussed in this article will be examined in depth at the next Homeless & Inclusion Health 2018 Annual International Symposium, taking place in London on Wednesday 7th March & Thursday 8th March 2018.

Earlybird registration for this event is now open and offers significant discounts, register your delegate place here.

Catch up on past events in this series with the Homeless & Inclusion Health Digital Library, which contains more than 130 expert video presentations.

For more insight into Homelessness and End of Life Care watch this video on End of life care and homelessness – what can we do to make things better?

Filmed at the UK Faculty for Homeless and Inclusion Health’s fifth annual symposium on health, homelessness and multiple exclusion Dr Caroline Shulman, GP in homeless & inclusion health, KHP, Clinical research fellow, Pathway, honorary senior lecturer, UCL; Dr Briony Hudson, Research Associate, Pathway and UCL & Niamh Brophy, Palliative Care Co-ordinator, St Mungo’s Broadway lead the discussion.