Improving motor neurone disease care through research

The NIHR, in partnership with the Motor Neurone Disease (MND) Association, has awarded the first NIHR MND Association Doctoral Fellowship to Kirsty Harrison, a speech and language therapist. 

MND is a neurodegenerative disease, characterised by loss of motor neurone function. Kirsty’s research focuses on co-developing a self-management intervention for eating, drinking, and swallowing for people with MND. She will begin the 3-year Fellowship in January. 

NIHR’s Charity Partnership Fellowship with the MND Association aims to attract potential future leaders in applied health or social care research towards a career in MND research. It also enables researchers to receive input from those in the MND community.

Kirsty is thrilled to be awarded the first NIHR MND Charity Partnership Fellowship. Her research will pave the way for an accessible, practical resource that people living with motor neurone disease (MND), their loved ones, and healthcare professionals can rely on for support.

Professor Waljit Dhillo, Dean of NIHR Academy added: "I’m excited to welcome Kirsty as the first researcher funded under this new partnership with the MND Association. We are committed to helping health and social care researchers tackle the complex challenges and this award will help improve the lives of everyone impacted by MND."

The journey to MND research

Kirsty's journey into MND research began with her role as a community speech and language therapy team leader where she witnessed the profound challenges faced by people living with MND. She explains: “I saw people make tough decisions about whether to have a feeding tube and noticed they often continued eating and drinking despite risks.”

These decisions were made against a backdrop of limited evidence-based guidance, sparking Kirsty’s passion for MND research and a desire to bridge this gap. Her commitment to addressing these gaps led her to academic roles at City, University of London and the University of East Anglia.

Dr Sophie Nyberg, Research Programmes and Partnerships Manager at the MND Association, stated that they are delighted to fund this research by Kirsty that could lead to improved care of people living with and affected by MND. “This fellowship also adds a new dimension to the MND Association portfolio and is the first health and social care research fellowship we have offered. By attracting, retaining and developing health and social care professionals, we’re aiming to discover new ways to help people diagnosed with this devastating disease.”

Shaping the future of MND care

MND affects up to 5,000 adults in the UK at any one time. It kills a third of people within a year and more than half within two years of diagnosis. Most individuals with MND experience swallowing difficulties. This can lead to complications such as:

• weight loss
• social isolation
• respiratory infections

Kirsty’s project aims to co-create a digital intervention offering evidence-based strategies and resources to manage eating and swallowing. “This research is about making eating, drinking, and swallowing easier, safer, and more enjoyable while giving people more control over these aspects of their lives,” she explains.

About 25% of people with MND opt for tube feeding. Most continue to eat and drink orally, facing significant risks and challenges.

Kirsty will work with people living with MND, healthcare professionals, NIHR and the MND Association, ensuring her work reflects the lived experiences of those it aims to support. It will also provide accessible, evidence-based resources tailored to real-world needs.

Advice for aspiring researchers

Kirsty suggests that aspiring researchers should "reach out to experienced researchers. They're generous with their time and eager to help. Most importantly, talk to people living with the condition. Their insights can ensure your research is grounded in reality."