Research published today 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 Pathway, Marie Curie Palliative Care Research Department at University College London (UCL), 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.”
The research, published in the journal Palliative Medicine, was funded by the Oak Foundation and supported by Marie Curie, Pathway and Coordinate My Care.
Notes to Editors
Case studies and interviews available on request.
Alex Bax, Chief Executive at Pathway, sad: “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.”
Simon Jones, Director of Policy and Public Affairs at Marie Curie, said: “The majority of people tell us that they wish to be cared for and die in comfort, where they normally live and surrounded by their loved ones. For most people, this means their own home. This important study highlights that for homeless people, home represents something completely different – a hostel, or on the street. Everyone deserves compassionate care and a dignified death, regardless of where they normally live, or their personal circumstance.”
Niamh Brophy, Palliative Care Coordinator at homelessness charity St Mungo’s, worked on the research. She said: “People who are homeless do not gain access to palliative care until very late in their illness, if at all. Often their choices for care are limited, and their death is more likely to be perceived as sudden, untimely and undignified.
“In recognition of this complexity, St Mungo’s provides the unique service of having a dedicated Palliative Care Coordinator. My role centres around giving our residents with serious health concerns the opportunity to choose their treatment, the chance to reconnect with loved ones, and the possibility to die in a dignified, comfortable way in a place of their choosing.”
The Oak Foundation said: “We are pleased to support the research to improve end of life care for people who are homeless or vulnerably housed. This work is key to strengthening the links between the homelessness sector and health providers.”
About the research
- Homelessness includes not only people who are sleeping on the streets, but also those in insecure or temporary accommodation such as hostels.
- Participants were recruited across three London boroughs, Lambeth, Hackney and Westminster, selected for their high volume of both homeless people and homelessness services. Frontline homelessness providers and health and social care professionals were recruited through the research’s team existing connections.
- 127 participants took part. Over a third (n=39%) of the homeless participants had been homeless for more than five years; 86% reported having slept rough and 71% reported currently sleeping in hostels, most of the time.
A recent CQC report acknowledged that people from certain groups in society, including homeless people, experience poorer quality care at the end of their lives and that more must to done to tackle the problem.
- In London, appropriate services for homeless people with advanced ill-health are lacking. Facilities that can meet the physical and emotional needs of homeless people with advanced ill health, who may continue to misuse substances, are needed.
- There is currently a large emotional, and practical burden on hostel staff in supporting homeless people with advanced ill-health due to lack of appropriate alternatives. Homeless people, and those supporting them struggle to access the services required.
- There is a conflict between the recovery-focused nature of many services and the realities of health and illness for homeless people that creates a lack of comprehensive person centred care.
- Collaboration between health, housing and social services, the promotion of multidisciplinary working including hostel in-reach and greater training and support are urgently needed for professionals and those working with homeless people as their health deteriorates.
About the partners
Marie Curie – care and support through terminal illness
Please note – we are now called ‘Marie Curie’ (not Marie Curie Cancer Care)
Marie Curie is the UK’s leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance. Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS.
The Marie Curie Palliative Care Research Department at UCL is an internationally recognised centre of research with a team of over 20 full-time researchers. The department receives core funding from Marie Curie and also undertakes research funded by the National Institute for Health Research (NIHR), the Alzheimer’s Society and other research funders. The department has particular research strengths in the areas of palliative care for people with dementia, prognostication in advanced cancer and the management of cancer-related fatigue.
Pathway works to improve healthcare for homeless people. The charity has helped the NHS to create 11 homelessness teams in hospitals across England, supporting over 3000 patients every year. Pathway also develops models to facilitate improvements in patient care, carries out research in new and developing areas, provides training for healthcare professionals and supports specialist commissioning. Pathway hosts The Faculty for Homeless and Inclusion Health, a network of over 900 health and social care professionals providing support for homeless people, vulnerable migrants, gypsy and traveller communities and people in the sex industry.
St Mungo’s provides a bed and support to more than 2,600 people each night who are either homeless or at risk of homelessness. As a charity and housing association, we work to prevent homelessness, through more than 250 projects including emergency services, supported housing, specialist physical and mental health services and advice, skills and work services. We believe everyone should have a place to call home and be able to fulfil their hopes and ambitions. www.mungos.org
St Mungo’s Palliative Care Service started in 2007, and since then we have
- Provided more than 190 residents with end of life care support including bereavement support
- Delivered training about homelessness and end of life care to more than 300 staff
- Developed an online Resource packaimed at supporting staff working with people who are homeless
- Forged greater links and partnership working with services such as a multidisciplinary working group set up to identify earlier on those residents whose health may be deteriorating
- Partnered on collaborative research and training development with UCL, Marie Curie and Pathway
Coordinate My Care (CMC)
Coordinate My Care is an NHS urgent care clinical service developed from the concept of a multidisciplinary digital end of life care plan to an urgent care plan for all vulnerable patients. CMC was established in May 2012 to address the need for patients to have integrated, coordinated and quality care. The CMC service is implemented successfully across the 32 London CCGs where it has provided quality improvements and a reduction in unnecessary hospital admissions. As of June 2017, 41,565 care plans have been created.
Palliative Medicine s a highly ranked, peer reviewed scholarly journal dedicated to improving knowledge and clinical practice in the palliative care of patients with far advanced disease. It reflects the multidisciplinary approach that is the hallmark of effective palliative care. https://journals.sagepub.com/home/pmj