Branch Get-Together 17th May – Carers Special Event

If you care for someone with MND, our next branch get together 17th May is for you, for a very good reason, as it will have a Carers theme, and a new project!

We have a research project, and want to have YOUR input!

Dr John Ealing, CSNAT project lead will be our guest speaker, see the MND Association’s research team statement below:

Designing more support for carers – MND Association & Marie Curie

A research project is being funded, 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, research teams 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 research is due to start later in the summer and as part of the work researchers will collect opinions and experiences of carers and practitioners. Information obtained from these 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.

We will talk a bit more about the research at the meeting and would like to hear what you think about the plans and any practical suggestions you may have for the best ways to conduct the focus groups and interviews that will be undertaken. All the research recruitment will be through clinics, but the researchers would like volunteers to form a PPI (patient and public involvement) group for Stage 1 and then an advisory group for Stage 2.

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.