Research priorities in palliative and end of life care

Palliative-care-2In 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

On the seventh day of Christmas MND research gave to me: Seven research strategy themes

“On the seventh day of Christmas MND research gives to you… our SEVEN research strategy themes”

It’s New Year’s eve, a time to look back and celebrate on 2014 and our MND research achievements. It’s also a time to look to the future; in 2015 we will be funding new MND research in line with our research strategy.

Our 2010-2015 research strategy focuses on seven key themes.

causes1) Identifying the causes of MND

The exact cause of the majority of cases of MND is still unknown. Therefore identifying the causes is our first step in understanding MND and developing future treatments.

In 2014 we identified two new inherited MND genes and also announced funding for the UK Whole Genome Sequencing project to better identify the rarer genetic factors involved in causing the disease. Read more.

models2) Create and validate new models

Once we identify a genetic cause of MND, we need to find out how this gene causes MND. Animal and cellular models help us to find out how the gene affects the motor neurones and how this causes disease in a complex animal system. Continue reading

What should be top of palliative and end of life research To Do list?

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.  Continue reading

Have your say about research priorities

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?

Continue reading