Today we announced the results of an exciting new funding partnership with Marie Curie. Together we will be co-funding three research grants that help to answer some questions that people with MND identified as a priority for end of life care research. This is the first time that the MND Association and Marie Curie have worked together with a joint funding call. Each organisation has committed an equal amount of money to the funding of these projects, a total cost of £450,000 over the duration of the projects.
Marie Curie funds new palliative and end of life care research every year. Last year, as well as joining up with the Association to fund MND-related research projects, they also joined up with the Chief Scientist Office in Scotland, to fund research that benefits people at the end of life in Scotland. It’s a really positive sign that so many organisations are coming together to improve the palliative and end of life care available to everyone. So together the three organisations have agreed to fund 9 projects at a total cost of £1.3 million, ranging from understanding the symptoms people experience at the end of life to how these can be addressed and the services available to support people.
The three research projects in this collaborative funding call are based at the University of Sheffield, the University of Manchester and the University of York respectively.
- A prospective observation of secretory management (PI Chris McDermott, SITraN)
- A systematic review of qualitative research into MND palliative care (PI Kate Fleming, University of York)
- An adaptation of an existing carers’ support tool for families affected by MND (PIs Gunn Grande, University of Manchester & Gail Ewing, University of Cambridge)
Improving management of saliva and secretions
As many as half of people with MND may have problems with excess saliva and for most of those the symptom is not well managed.
“As a doctor caring for individuals living with MND common and difficult problems I see people struggling with are excess saliva drooling from the mouth and thick sticky secretions at the back of the throat”, explained Professor Chris McDermott.
“Unfortunately the best way to help people with these problems is unproven. There are lots of different approaches currently used and the aim of this project is to begin to explore which approach may give the best results for people living with MND”.
His research project at the University of Sheffield will be collecting information on how excess saliva is treated and how well the treatment worked, across many multidisciplinary clinics in the UK including MND Association Care Centres.
The need for more research into the management of excess saliva was highlighted by the MND NICE guideline and a recent research priority setting exercise, the Palliative and end of life care Priority Setting Partnership (PeolcPSP). This funding is the first step in work that could make a huge difference to so many people.
Learning from people with MND to improve palliative care
Many research studies have asked how people with MND, their families and carers feel about the palliative care they have received or what is important to them. A project led by Dr Kate Fleming based at the Department of Health Sciences at the University of York will compare and contrast the research studies so far. The results will tell us more comprehensively what has worked and what we still need to find out. This will inform and improve current palliative care services, while also highlighting future policy and research priorities so that people with MND and their families can get the best support possible.
Designing more support for carers
The third research project we will be funding is led by Professor Gunn Grande at the University of Manchester and Dr Gail Ewing at the University of Cambridge. Recognising the central role that carers play in palliative care, she and her research team aim to develop a tool that will empower carers to better coordinate support for themselves and people with MND.
While there are resources available to carers, it is important to have a more individualised support based on their specific needs. The researchers will collect opinions and experiences of carers and practitioners through three MND Care Centres. Information obtained from these focus groups will then help to develop the Carer Support Needs Assessment Tool (CSNAT) for MND. This will aim to assure that carers have a well-planned long-term support that can be adapted to the carer’s changing needs over time.
The MND Association and Marie Curie believe that the studies will address crucial research gaps in terms of identifying and addressing the palliative care needs of people with MND and their carers, which have been relatively neglected until now.
- More information on saliva management is available on our website, or in a downloadable information sheet.
- You can find out more about support for carers in our comprehensive guide, details of this and other information for carers is available on our website.
- Read Marie Curie’s press release on this new partnership.
- The themes for this joint funding call were identified through a priority setting partnership involving patients, carers and health and social care professionals. You can read more about this on previous posts on our research blog and in the final report.
After spending 2 weeks with my brother who is in end stages of MND, his wishes are not being respected. He wants his life to end. Try researching that.
I am sorry to hear that your brother’s wishes are not being respected. I suggest that you contact the team at MND Connect who should be able to provide support and information on this matter. While an old study, you might find reading this article on patients’ wishes on end of life decision-making helpful.
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