A research research project designed to improve care for people living with Motor Neurone Disease (MND) is set to get underway this week, with a focus on managing choking—one of the most distressing and life-threatening symptoms associated with the condition.
The project, titled “Management of Choking in People Living with Motor Neurone Disease: A Co-Designed, Evidence-Based Clinical Algorithm,” is a joint partnership between Prospect Hospice, Great Western Hospital, and the University of Oxford. It has been made possible thanks to funding from the Motor Neurone Disease Association.
This project marks the first time clinical guidance for managing choking in MND will be co-designed with input from healthcare professionals, carers, and those living with the disease, ensuring a practical and compassionate approach to care.
Dorinda Moffatt, MND Specialist Practitioner at Prospect Hospice, highlighted the importance of this collaborative approach: “This is an important step in improving support for people with MND, giving them and their carers clearer guidance on how to manage choking episodes safely and with dignity.”
Dr Sara Mazzucco, Neurology Consultant at Great Western Hospital, expressed her excitement about the project’s potential impact: “We are thrilled to have been awarded funding from the Motor Neurone Disease Association to be able to take forward this life-changing research. Bringing everyone together in a shared space means we can have open conversations, grounded in compassion, and give those who live with the condition the chance to be directly involved in developing treatments that will positively affect others on the MND journey.”
The research team is currently working closely with people living with MND, their families, and healthcare professionals to gather insights and shape the development of this much-needed guidance. Their goal is to create a clear and effective plan that will help both medical staff and carers respond to choking incidents confidently and with care.
The project will officially launch at an event on Friday 14th March 2025 at Prospect Hospice in Wroughton. The event will bring together leading experts, healthcare professionals, and those affected by MND to discuss the latest findings and outline the next steps.
For more information about the project or to get involved, please contact Sam at bswicb.mndserviceprospect@nhs.net.
