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.
Where did these questions come from?
This ‘prioritisation’ survey is the second stage of the project. The first stage took place earlier in the year, when we asked people to tell us their questions or experiences about the end of life. More than 1,400 people contributed to the first stage of the project. A big thank you to the many people affected by MND who took part.
Sometimes it’s not so easy to explain exactly what the question is – in recognition of this there was plenty of room in the survey for people to write about their experiences or their questions on this difficult topic.
Over the summer a team of people across the country categorised the answers, checking to see what was known about the topic already (what evidence was available) and re-phrasing the topics into questions. At each step of the way the initial responses were close to hand, to check that the original meaning had not been lost.
What are you asking us to do?
Please can you help us find the top priorities for research (which topics should be top of our To Do list) by reading 83 questions and considering whether each of them is a priority for you.
The list of questions is on the internet on this link. For each question you will be asked to rank the questions on a scale of ‘very low priority’, ‘low priority’, ‘high priority’, ‘very high priority’ or ‘no opinion’.
The questions are complex, thought provoking and in some ways challenging. We estimate that it will take around 45 minutes to rate them all. It must be completed in ‘one go’ – its not possible to save your answers half way through and come back to them.
If you don’t have access to the internet, or you’d rather do this on paper, please email email@example.com or phone 020 7091 4153 to get a paper copy of these questions. The survey will be open until Sunday 27 October.
So why are we doing this?
I am delighted to see this research project progressing. Families tell us all the time of the huge value of including palliative care in the local MND service – it provides help for the whole family.
I can only encourage everyone to complete the survey and ‘have their say’ in what matters to them in the field of palliative care research. This seems to me the only way that we can know what the most important issues are and ensure the right research activities are initiated.
Sue Smith, MND Association Regional Care Development Adviser (RCDA), who has a background in palliative care.
More information on end of life care
We acknowledge that this research project may not be for you. End of life care and end of life decisions are sensitive subjects that many people find difficult to talk about or explore. You may not feel ready for further information yet, but we are here to help you when you do. If you have any immediate concerns, please contact our helpline MND Connect for advice and support (firstname.lastname@example.org , 08457 62 62 62). You may find a new End of Life Guide that we have published useful, more information is available on our website.
Thank you, in anticipation of you giving your time and wisdom so generously.