In partnership with the Queen’s Nursing Institute, we’re working to understand what care is available for people dying at home, and how this care is affected by various issues.
This survey builds on 70 years of partnership; in 1952, the Marie Curie Memorial Fund and Queen’s Institute of District Nursing conducted a survey to understand what was needed to help patients 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 heating, access to information, and night nursing.
As a direct result, 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.
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 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, terminally ill people who are cared for at home will suffer gravely this winter.
So, to get a better understanding of these issues, Marie Curie and The Queen’s Nursing Institute are partnering again to research what has changed since 1952, and to consider what support is needed to improve experience at the end of life. The findings will highlight the gaps that remain today and inform policies to improve support for people dying at home.
And, if you’ve got experience of providing professional or voluntary care for people dying at home, we’d like to hear about it.
This blog is republished from https://www.mariecurie.org.uk/blog/research-on-carers/349936 with kind permission.