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Palliative care for people experiencing homelessness
Background
People experiencing homelessness encounter significant barriers in accessing health care services, experience poor health outcomes and frequently die young. ‘Homelessness’ includes people sleeping on the streets (rough sleeping) and in insecure or temporary accommodation, including hostels, squatting and sofa surfing.
For many people, homelessness is associated with deep social exclusion such as having been in an institutional setting while a child, substance misuse, severe mental illness or involvement with the criminal justice system. This is often referred to as multiple-exclusion homelessness. (MEH) The majority of people with MEH have experienced significant trauma, often starting in childhood.
This department has hosted several research projects aimed at understanding and meeting the palliative care needs of people experiencing homelessness. The NIHR recently funded the department, in collaboration with Marie Curie, Pathway and Groundswell to undertake a realist evaluation of IMPROVE, an intervention designed to deliver inter professional, place-based communities of practice focusing on improving support and experiences for people experiencing homelessness who have advanced ill health.
Previous work
Previous work has included:
- A systematic review of palliative care and homelessness
- A large qualitative study exploring barriers in providing palliative care and challenges to discussing palliative care with people who are homeless
- Development and evaluation of training for hostel staff
- Creation of an online training resource for frontline homelessness staff
- A project linking community palliative care teams with homeless hostels, in the form of regular in-reach resulting in improved identification of people with concern, more support brought into the hostel from the multidisciplinary support and more referrals into the local hospice.
- Exploration of frailty and holistic needs within a homeless hostel. Working with a geriatrician the team demonstrated that many people with a history of rough sleeping within a hostel setting, are frail and experience high rates of multimorbidity at a much younger age than the general population
- Development of a questionnaire that frontline homelessness staff can complete with their clients, to explore unmet health and care needs.
- Development of a short film outlining some of the challenges experienced by people who are homeless with advanced ill health, and recommendations for improving access to care for this
- Development of the TIFFIN recommendations for involving people with lived experience of homelessness in palliative and end of life care research
During this early work the following issues were identified:
- There are complexities around identifying who is palliative as many people who are sick with deteriorating health and at high risk of dying have illness such as advanced liver disease, with often uncertain illness trajectories
- There is a lack of appropriate places of care for people who are homeless with high care and support needs, particularly if this is in combination with substance misuse and/or mental health difficulties or when ill at a young age.
- Due to the lack of alternatives, homeless people with advanced ill-health often remain in hostels. Hostel staff are not trained to support people who are unwell, and currently receive little support.
- There is often a conflict between the 'recovery' focused nature of many services such as hostels (i.e. their aim being to support people to move out of homelessness and out of addiction), and the realities of health and illness for homeless people.
- Conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Challenges to such conversations included; attitudes to death, the recovery focused nature of services; uncertainty regarding prognosis; lack of options regarding place of care; denial and fear of negative impact on people who have often experienced significant trauma and loss.
- Greater trauma informed multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.
- By bringing palliative care teams into hostels, if someone has deteriorating health and wishes to remain in a hostel, dignified planned deaths within hostels can be facilitated if the multidisciplinary team provide adequate, flexible trauma informed support.
This led to the development of a Community of Practice place-based intervention called IMPROVE, funded by Marie Curie, the Oak Foundation and NHS England. Work on this was initiated during the pandemic.
The IMPROVE programme brings professionals together online or face to face for 8 meetings of 1.5-2 hours over about 4-8 months. In the meetings staff are taught about homelessness and palliative care, and supported to share what they already know, and talk about how they can work better together. The package includes training for a lead person (called a facilitator) to run the sessions, and a website with videos / other training resources to help them host online meetings. So far 50 people have been trained as facilitators, and 9 Communities of Practice have run so far involving 185 staff.
Current work
The department is now hosting a 3 year NIHR grant to do a realist evaluation of the IMPROVE intervention (and make recommended changes to the resources based on feedback so far). Work commenced in November 2024.
This will include the supported delivery of the intervention at 6 sites in research conditions. If you would like to be a part of this or want to know more about any aspect of the work on this page please contact: briony.hudson@mariecurie.org.uk
- Evidence of Imapct
Evidence of impact so far in this area:
- Selected for UCL REF impact case study in 2022
- Contributed to a range of national and localised task and finish groups and guidelines addressing the unmet needs of people experiencing homelessness in accessing palliative and end of life care services, including at NHSE and ICS levels
- Contributed to reports from Health London Partnership, CQC, Hospice UK and Homeless Link and the Faculty of Inclusion Health standards
- Invited to oral presentations at over 50 conferences (palliative care, public health, drug and alcohol and homelessness) - both nationally and internationally.