Why has MND Views been created?
Our candid video interviews about treatment and care, with MND and Kennedy’s disease, will enhance our information. By sharing your experiences, voices and views, we can:
- help our audiences identify with similar lived experiences and the support received
- help our audiences feel more informed about treatment and care for MND and support them in decision-making
- encourage more open and focused conversations between those affected and the professionals who offer support
- help raise awareness about treatment interventions and personal care
- provide user interviews that are evidence-based, conducted by health professionals
- feed into our wider goals to integrate support between our audiences, their health and social care professionals and our own services.
What is included in the content?
Our participants openly share their views about treatment and care. These are all personal views of their individual experiences. Support can also vary across regions, but topics were guided by recommendations for professionals in NICE guideline NG42 about the management of MND.
Find out more about the recommendations in our pocket-sized booklet, What you should expect from your care. This small resource is ideal to carry with you to appointments to help you get the support you need. Find out more on our web page - Getting the right treatment and care
Topics not covered by the guideline are explored in some of the MND Views interviews, such as genetic testing. These have been included in response to feedback and may be of benefit to decision-making about support.
As they experience similar symptoms, MND Views includes participants with Kennedy’s disease. The MND Association also supports people with Kennedy’s disease, their families and carers.
Some brand names may appear in interviews, but this does not mean endorsement of these products by the MND Association. Keeping these instances helped explore core aspects of care.
How can this resource be used?
You are welcome to share links to these pages, but you must not copy, reproduce or reuse the content without permission. Contact infofeedback@mndassociation.org for more information.
Who’s involved?
Produced by the MND Association, our MND Views video hub is developed and maintained in collaboration with our participants and health and social care experts.
In our work, we always involve people from a range of backgrounds, as here with MND Views. Our thanks to all those who take part and share their experiences. This is not an easy thing to do, but they kindly offer their insight here to help others facing the challenges of MND or Kennedy’s disease.
Our thanks also to the following for their expertise:
- Alys Griffiths BSc PhD, Senior Research Fellow, Department of Neuroscience, Sheffield Institute for Translational Neuroscience (SITraN), University of Sheffield.
- Dr Emily Mayberry, Senior Clinical Psychologist, CCAG Postdoctoral Fellow and Sheffield Institute for Translational Neuroscience (SITraN) Honorary Senior Lecturer, Sheffield Teaching Hospitals, University of Sheffield.
- Martin Rowe, film-maker.
How was this funded?
This project was fully funded by the MND Association.
Where can I give feedback?
We love to hear what you think we’re doing well and where we can improve our information for people with MND or Kennedy’s disease, their families and carers. Your anonymous comments may also be used to help raise awareness and influence within our resources, campaigns, and applications for funding.
Can I take part?
We have a limited number of places for further interviews at the moment, but we are looking to include specific content about the following:
- changes to thinking and behaviour with MND
- hormonal changes with Kennedy’s disease
- the impact of having children or young people in a household affected by MND or Kennedy’s disease
- treatment and care if you live in Wales or Northern Ireland.
If you have MND or Kennedy’s disease, or you are a carer for someone who has been diagnosed and would like to find out more, contact us at: infofeedback@mndassociation.org
Page last updated: 10 April 2026
Next full review: April 2027