It is estimated that 90,000 people die in poverty each year in the UK. Having a terminal illness puts a significant financial strain on people, for example, due to increased costs for care, energy use at home and, for people who are not retired, reduced income. For people already living on a low income, terminal illness exacerbates the effects of poverty.
One way to help could be to improve access to social security benefits for people with a terminal illness, to help alleviate financial problems and fund some of the additional costs of serious illness.
We do not know how many people living with a terminal illness miss out on the benefits available to them, but in the wider community, benefits often go unclaimed. Reasons for this can include perceived ineligibility, lack of awareness or difficulties navigating the application process.
The aim of this study is to investigate benefit take-up among people living with a terminal illness in England and Wales, identify barriers and facilitators to making a claim, and develop resources and recommendations to improve benefit take-up equitably.
By understanding the challenges terminally ill people face when navigating the benefits system, we can identify potential interventions to improve access. The findings will inform policy and practice changes aimed at increasing benefit take-up, helping to reduce financial hardship and promote dignity for people at the end of life.
To improve benefit take-up for people living with terminal illness, the following are needed:
The research will involve several phases. To begin with, researchers will collaborate with the Office of National Statistics to use data from the Department for Work and Pensions. They will seek to find out what proportion of terminally ill people do not claim benefits they are eligible for, such as Personal Independence Payments (PIP).
They will also investigate whether some groups are more likely than others to underclaim, based on factors such as diagnosis, gender, ethnicity, sexuality or geographical location.
By generating better data on benefit take-up among people with terminal illness, the Take-up study will identify the extent of under-claiming in England and Wales, highlighting which groups are most at risk of missing out. Understanding these disparities will help ensure that support mechanisms are targeted toward those who need them most.
Next, the researchers will carry out interviews and focus groups, using a thematic approach to identifying barriers and facilitators to claiming benefits from the perspective of patients, carers and healthcare professionals.
They will then undertake a review of existing benefit take-up initiatives, using email-based surveys and follow up telephone interviews with members of voluntary, community and local authority sector organisations, such as Citizens Advice Bureau (CAB).
The findings will be consolidated into guidance and resources for healthcare professionals to support patients to make benefit claims, as well as local and national policy recommendations.
A lead patient and public involvement (PPI) member, also a co-applicant, played a key role in shaping the research. Drawing on personal experience of caring for someone with a terminal illness and facing financial hardship, they helped ensure the project’s aims were relevant and contributed to qualitative data analysis with the research team.
Two additional PPI members were involved throughout, contributing to recruitment, study materials, analysis, interpretation of findings and dissemination. All PPI members engaged with the Cicely Saunders Institute’s PPI network, which provided training, workshops and wider involvement opportunities.
The work has been funded by a Marie Curie research grant and is taking place across King's College Hospital, Bradford Teaching Hospital, Marie Curie Hospice Cardiff, Marie Curie Hospice West Midlands and two GP practices. It is expected to complete by the end of 2025.
Read more about the palliative and end of life care research at ARC South London.