New research will address the palliative care needs of people with motor neurone disease

Posted on 5 April 2017

New partnership between Marie Curie and Motor Neurone Disease Association creates funding for research

Dr Kate Flemming, from the Department of Health Sciences, has, along with St Leonard’s Hospice York, secured funding to undertake research into the palliative care needs of people with motor neurone disease (MND) and their informal care givers. The funding for the research comes as a result of a new partnership between Marie Curie and the Motor Neurone Disease Association (MNDA).

The research will address a crucial research gap in terms of identifying and addressing the palliative care needs of people with MND. There is currently no cure for MND and more than half of those with the condition will die within two years of diagnosis. There is a growing recognition that palliative care for people with MND should begin as early as possible. The research stands to improve the lives of the 5,000 adults affected by MND in the UK at any one time.

The study, which will be carried out by the University of York along with staff and volunteers from St Leonard’s Hospice, aims to develop a more complete picture of the needs of patients and carers in addition to identifying gaps in existing research.

Dr Flemming said: “It is a great opportunity for the Department and St Leonard’s Hospice to work together on one of only three projects funded by the new research collaboration between Marie Curie and MNDA. The results will tell us more comprehensively from the perspective of people with MND and their carers what helps them most. This will inform and improve current palliative care services, while also highlighting future policy and research priorities so that people with MND and their families can get the best support possible. “

Dr Bill Hulme, Medical Director at St Leonard’s, said; “St Leonard’s Hospice is delighted to be working in collaboration with the University of York and Dr Flemming on this important area of research. We recognise the need to develop further the care we provide for patients with MND and their carers, and hope that this joint project will have a direct impact on patients across the Vale of York.”

Mrs Samantha Bolsher, who is one of the lay members of project team stated “Caring for my husband who had MND was a steep and difficult learning curve. This research will help identify the palliative care needs of current and future individuals with MND and their carers and I am delighted to be a part of this work.”