Title: Understanding access to palliative care support for people with advanced ill health, who have unsettled immigration status and are homeless
Funder: Marie Curie

Abstract: The number of people experiencing homelessness (PEH) in Great Britain has been rising since 2010 and has been associated with increased morbidity and mortality. In our previous research we found that PEH rarely have access to palliative care. Options for place of care were extremely limited, meaning that people with advanced ill health living in homeless hostels often remained there, even when approaching the end of life. In this proposal the term “unsettled immigration status” is used to include people who are undocumented migrants (e.g., with no legal status such as visa overstayers, people whose asylum applications have been rejected) and EU nationals without settled status (who have not retained their worker status). None of these groups have access to public funds or benefits and are at high risk of destitution. There is currently very limited research into the experiences of this group regarding palliative care access. A literature search for this proposal identified no UK studies looking specifically at this issue, representing a significant knowledge gap. The objective of this project is to understand the experiences, palliative care needs, and existing palliative care support of people with advanced ill health who have unsettled immigration status and are homeless. Our aims are (1) to understand what health and social care staff supporting this group see as challenges and opportunities regarding palliative care support; (2) to understand the experiences within this group in relation to palliative care access and their experiences of advanced ill health; and (3) to understand the experiences within UK Hospices around supporting this group. We will accomplish these aims through focus groups of health and social care staff who support this population, interviews with PEH who have advanced ill health and unsettled immigration status, and a survey of UK hospice staff around their experiences supporting this population.

Lay abstract: This project aims to explore the challenges in accessing palliative care for people who are homeless and are not entitled to benefits or free NHS care. People experiencing homelessness (PEH) are a vulnerable group whose health is often poor. The average age of death for someone experiencing homelessness is around 30 years younger than for people in stable housing. In previous research, we found PEH are rarely able to access palliative care(1, 2). Our research focused on people living in hostel accommodation and we found that hostel staff played a key role in supporting people towards the end of their lives. In this research we want to explore what happens for people who are homeless, very unwell but who are not able to access hostel accommodation due to their immigration status. To help us learn more about the challenges for this group we plan to do three things. 1. hold focus groups with health and social care professionals who support this group to hear what they see as the challenges and opportunities in accessing palliative support. 2. Speak with people with ill health who have unsettled immigration status and are experiencing homeless about their experiences of accessing health care (over the phone or online), participants in section 1 will assist in the recruitment of this group 3. Conduct a UK-wide online survey of hospice staff to learn of their experiences of supporting this group (if any) and their awareness of issues such as eligibility for NHS care. Our findings will inform both Marie Curie services and policy activities by highlighting the needs of people we may not be reaching. We will develop webinars and resources to share our learning, and shine a light on the challenges in accessing palliative care for this extremely vulnerable group.

Research activity codes: 7.2 END OF LIFE CARE;7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE