Management of choking in people living with Motor Neuron Disease
A collaboration between Great Western Hospitals NHS Foundation Trust (Lead), Prospect Hospice, and the Nuffield Department of Primary Care Health Sciences and funded by the Motor Neurone Disease Association
“This project will fill the gap in NICE guidelines on management of choking with evidence-based, co-designed guidance for people living with MND, carers and healthcare professionals.” Dr Sara Mazzucco, Principal Investigator
BACKGROUND
MND (also known as Amyotrophic Lateral Sclerosis) affects muscles in the throat and chest, which causes difficulty with breathing, coughing and swallowing. Choking, (where breathing becomes difficult due to airway blockage), or coughing fits are more frequent, severe and prolonged in people living with MND. This can lead to emergency calls, hospital admissions, and unplanned medical procedures.
What we will do
This project aims to develop guidance on choking, specifically for people living with and affected by MND. The researchers will summarise the existing evidence on management of choking in MND, comparing existing treatments and highlighting gaps in our knowledge. They will interview people living with MND, their carers and healthcare professionals to understand their experiences and needs, and involve them in the development of new guidance on managing choking in MND. The researchers will then share this guidance with the MND community, MND healthcare professionals and world-class MND experts contributing to clinical guidelines.
OUR PLANNED RESEARCH OUTPUTS
This research will ensure that there are clear, standardised guidelines for managing choking in MND, centred around the needs of people living with MND, their carers and healthcare professionals. This could alleviate anxiety around choking, and decrease the need for choking-related emergency care and unplanned hospital admissions for people living with MND.
PATIENT AND PUBLIC INVOLVEMENT
This study was co-designed with people with lived experience of MND. The work was planned following a PPI event supported by the MNDA and hosted at Prospect Hospice, Swindon, where we invited people living with MND, carers, family members, MNDA representatives and MND healthcare professionals to explore unmet needs around choking.
The guidance we produce will be co-designed with people living with MND, carers and health professionals. We also have a PPI co-applicant to facilitate input from patient representatives throughout the study.
Project Details:
Full project title:
Management of choking in people living with Motor Neurone Disease: a co-designed, evidence-based clinical algorithm
Length of project: February 2025 to January 2028
Funder: Motor Neurone Disease Association
Lead Institution: Great Western Hospitals NHS Foundation Trust
Project reference number: 2410-794
Total £269,839
For more information
Please contact Angela Martin at angela.martin@phc.ox.ac.uk or text 07824 301080
Principal Investigator
Nuffield Department of Clinical Neurosciences
Senior Clinical Research Fellow
Great Western Hospitals NHS Foundation Trust
Consultant Neurologist and MNS lead
Our team
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Lisa Hinton
Associate Professor
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Angela Martin
MS&HERG Operations Manager
Co-applicants
Lisa Hinton
Associate Professor, Social Scientist
Ms. Dorinda Moffatt
MND Specialist Practitioner
Mrs. Claire Rose
PPI Representative
Research Staff
Lucie Spurway
Speech and language therapist
Tracy Thomas
MND Specialist nurse
Neil Drinkwater
MND Association service development manager
Donna Noonan
Head of service, Research and Innovation, Great Western Hospital
Collaborators
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