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.
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. Continue reading
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?