Dying, death and bereavement will affect all of us at some point in our lives. But sadly, palliative and end of life care research often receives very little funding in comparison to other non-commercial health-related research projects. A report by end of life charity Marie Curie found that by 2048, there will be more than 730,000 people with palliative care needs in the UK, but data has revealed that this sector received a mere 0.21% of the £2.56bn spent on health research nationwide in 2018.
The charity predicts that in just 25 years’ time, more than one person a minute will have palliative needs when they die – but hundreds of thousands won’t get the support they need if the system does not change.
As the largest charitable funder of palliative and end of life care research, it is important for Marie Curie to focus the projects that are funded on topics that are most important to people who are directly impacted, as well as the health and social care professionals who support them.
This is why the charity has embarked on a new project with the James Lind Alliance (JLA), calling on healthcare workers, people living with a serious life-limiting illness and their family and friends, to take part in a critical survey to have their say on their top concerns for palliative and end of life care. The project will help establish key concerns for the academic research that we will fund in the future, helping to ensure that future research answers questions that are important to people, and generates evidence with the potential to improve end of life experiences.
The project – The Palliative and End of Life Care Research Priorities Project – is a refresh of similar work completed in 2015, which found that understanding how best to support people outside of typical office hours was a top priority for those affected. Since then, Marie Curie has allocated more than £1m to seven projects on this topic and in 2022 we published the Better End of Life report, focusing on out-of-hours care for people with advanced illness.
The priorities identified have been influential in shaping the research calls of Marie Curie and the National Institute for Health and Care Research, but more has to be done.
Much has changed since our initial project; we have all experienced the pressures of the COVID-19 pandemic and are currently facing a cost-of-living crisis. We want to make sure that we continue to produce and fund research that is in line with the needs of health and social care professionals, patients and those around them who are affected by dying, death and bereavement, and we feel that the time is right to once again ask people what future palliative care research should focus on.
Marie Curie is committed to making sure that people with lived experience are at the heart of what we do and to ensure this, we have also developed a lived experience group of 20 individuals who have been impacted by life-limiting illness themselves, or through caring for someone, as well as people who have faced bereavement, to run alongside and advise us during the project – to make sure it has the biggest possible chance of impact. This ensures that we have the best interests of people directly affected at the core of our values.
Following on from the survey, which closes on 31st December 2023, the next part of the project will include a second survey to prioritise the topics mentioned and a workshop will be held with people who are directly affected to agree on the most important priorities. The charity will also work with researchers to develop specific research questions relating to each priority area, so we can plan for adequate future research that matters most to those who will benefit from it.
This is our chance to shape the future of palliative and end of life care research and improve end of life experiences for all.
To find out more about the project and get involved in the survey, please visit https://palliativecarepsp.wordpress.com/Â Â Â