Major Research Project on End-of-Life Care in the UK
29 September 2022 | Priyanka Bose
Marie Curie and The Queen’s Nursing Institute are seeking the views of community nurses and their teams in a national survey.
The two charities are working to understand what care is available for people dying at home, and how this care is affected by issues facing society and healthcare services.
As well as registered nurses, we would like to hear from allied health professionals, healthcare assistants, nursing students, and the volunteers who support them.
This new survey builds on 70 years of partnership: in 1952, the Marie Curie Memorial Fund and Queen’s Institute of District Nursing (as the QNI was then known) conducted a survey to understand what was needed to help patients living with advanced diseases.
The resulting report was ground-breaking and highlighted the profound unmet needs in end-of-life care for people dying at home including the need for convalescent homes, welfare and benefit support including essentials such as heating bills, access to information, and night nursing. As a direct result of the 1952 survey, Marie Curie opened hospices across the UK and set up a nationwide community nursing service to support terminally ill people with palliative and end of life care in their homes, day and night.
Understanding today’s challenges
Fast forward to 2022 and a huge network of health and social care professionals, carers and volunteers provide end of life care and support. But shockingly, many of the issues highlighted by our research in 1952 are still key issues today, such as poverty, problems with equity of access to services, and lack of understanding around patient complexity, care, and wellbeing.
For example, a recent Marie Curie report (Dying in poverty) found over 90,000 people die in poverty in the UK every year. With the cost of living increasing and energy bills skyrocketing, many terminally ill people who are cared for at home will suffer gravely this winter.
To get a better understanding of these issues, Marie Curie and The QNI are partnering again to research what has changed since 1952, and to consider what support is needed to improve the experience of people at the end of their life. The findings will highlight the gaps that remain today and inform policies and practice to support people at home.
So, if you have experience of caring for people dying at home, we’d like to hear from you. Please share your experiences and support our research by completing the short survey by 7 November: Care and Support for Dying at Home.
If you have any questions, or would like to know more, please contact Dr Emma Carduff: Emma.Carduff@mariecurie.org.uk .
Blog author: Priyanka Bose, Research, Policy and Public Affairs Assistant, Marie Curie