Today an exciting announcement was made about three organisations working together to increase our knowledge on the best way to provide palliative and end of life care. The MND Association and the Chief Scientists Office in Scotland (CSO) will be working with Marie Curie on a new research call.
In addition to a £1million funding pot from Marie Curie, the CSO will contribute £225,000 of funding and MND Association will contribute up to £200,000. Scientists, clinicians or healthcare workers are invited to submit their outline applications by 14 January 2016.
Acting on what you told us
The areas that we’d like to fund are based on a project that was completed in January 2015, known as the ‘Palliative and End of Life Care Priority Setting Partnership’, shortened to ‘PeolcPSP’. At the core of this 18 month project were responses to an online survey, where many people shared their questions or experiences about the end of life. We were pleased that many people affected by MND took part.
From those survey responses, we worked out that there were a massive 83 topics that would be suitable for a research study (and where no conclusive studies had already been conducted). All of these are important topics to investigate, so we’re hoping that researchers with an interest in working in any of these topics will think about submitting an application for funding.
So what kind of topics are included?
The topics for the call are the list of 83 questions from this earlier palliative care research study (the PeolcPSP study mentioned above). It is too long a list to include in this post, but the overarching themes include how (best to):
- communicate topics on palliative and end of life care
- manage symptoms and medications
- provide support for carers and families
- provide support in bereavement
- provide support for staff (and staff training)
- co-ordinate care services
- provide access to services
- decide where the care should be and what type of care
Where can I find out more?
A press release and more information on how to apply for this funding is available on the Marie Curie website.
The Palliative and end of life care Priority Setting Partnership final report is available online. There’s also a video about the project explaining how it happened and why it is important.
In a fitting start to a new year, the results of the Palliative and End of Life Care Priority Setting Partnership top 10 priorities for research were released today. The topics range from: the best way to get out of hours palliative care, how to provide palliative care for everyone irrespective of where they live in the UK, to the best way to manage pain and discomfort for people with communication or cognitive difficulties.
For the MND Association the results will help focus future healthcare research and help support our campaigning for more funds for palliative and end of life care. Announcing the top 10 priorities for research is the start of a long process. I hope that it gives people with MND today a sense that their battles are being recognised, they’re not alone and that we’re all working together to ensure that better care is available. Read More »
Our interpretation of the famous sculpture of The Thinker by the French artist Auguste Rodin was chosen as the picture for the session at the International Symposium on ALS/MND on End of Life Decisions.
In a new format for the symposium, this session will take the form of a debate. Three distinguished speakers will discuss different perspectives of assisted dying. You will be able to follow comments on the #alssymp ‘hashtag’ on Twitter. The MND Association statement on assisted dying is on our website. One of the Association’s priorities is to ensure that more people with MND, where ever they live, will be able to access specialist and appropriate palliative and end of life care.
Our End of Life Guide was written to provide better information about the options and services available at the end of life, giving people the freedom of choice to make plans at a time of their choosing.
At the beginning of the week, the Palliative and End of Life Care Priority Setting Partnership (peolcPSP) launched a survey. Its aim is to help those with a passion for finding answers in the neglected area of palliative care research work out what should be top of their To Do lists. The MND Association is one of the partners in the project led by Marie Curie Cancer Care and supported by the James Lind Alliance.
We’re asking people with MND, their families and carers, healthcare professionals and clinicians to rate a set of 83 questions. For each question you can say whether you think it is a low or high priority for research. Read More »
The relative of a close friend of mine is seriously ill with cancer. Supporting my friend and hearing of how their relative is, brings back memories of people close to me that have died. It brings back memories of what happened to them, how it affected me and my family. At the same time I find myself thinking – how would I react to approaching the end of life – would I want to know everything, perhaps I would want to concentrate on living and not think about dying too much?
Either as a relative or someone who has a condition, some of us would be on Google or talking to those around us, looking for answers and reassurance. For some of those questions there aren’t any answers available. Perhaps you can’t or couldn’t find the answers either?
Read More »