Building a thorough understanding of neuromuscular healthcare provision so we can change it for the better
Services are under immense pressure, and we know that people living with a muscle wasting condition often struggle to access the care they need, and that neuromuscular healthcare delivery isn’t consistent across the UK.
This needs to change.
This summer, we’ll be carrying out a comprehensive review of neuromuscular healthcare provision to understand the exact problems that face neuromuscular healthcare and the areas where it is most failing to deliver.
This will provide us with the information to know what needs to be done to fix these problems, and to push for changes to make this happen.
In the UK, 1 in 600 people live with one of over 60 known neuromuscular conditions.
Neuromuscular services are under immense pressure, driven by resource challenges and workforce shortage.
Many people with neuromuscular conditions cannot access timely, high quality best possible care.
This new initiative is being launched to understand how services are being delivered.
How we will do it
To ensure we get all possible available information, we’ve broken down our review into four parts.
A profile of neuromuscular services
We’ll contact every neuromuscular team in the country, gathering information about their caseload, staffing, waitlists, and more.
Neuromuscular healthcare professional survey
We’ll carry out a neuromuscular healthcare professional survey to gather information about the working lives of neuromuscular healthcare professionals
Muscle wasting community survey
We’ll carry out a community survey to find out about the experiences of people living with a muscle wasting condition, their friends and carers, in accessing care.
Freedom of Information Requests
We’ll put forward Freedom of Information Requests to help identify key data commissioners hold on neuromuscular care.
How we’ll use this information to bring about change
With these findings we will produce a national report on the current state of neuromuscular care and make informed policy recommendations, which we will take forward to pressure the respective governments for change.
The data gathered will also help services benchmark against each other, support business cases and service improvement across the country
We plan to build a future where everyone can access the highest standard of care for neuromuscular conditions. Together we can change the future of neuromuscular healthcare.
Change for the better
“The service mapping project will give us very useful information on where service gaps exist across the UK and will help to inform where there are inequities in the quality of service available.”
~ Professor Rosaline Quinlivan, Trustee of Muscular Dystrophy UK
Frequently asked questions
The service mapping exercise is open to any service that provides specialist healthcare for people living with neuromuscular conditions. This may include neurology, respiratory, cardiology, or rehabilitation led services (and hospitals of varying sizes). You can also participate if you are a non-NHS body, such as charities, that clinically look after patients with neuromuscular conditions.
If you are unsure about whether your service is eligible, please contact us at professionals@musculardystrophyuk.org and we will be happy to advise.
We also invite you to complete our individual healthcare professionals survey which is open to any healthcare professional supporting children or adults living with neuromuscular conditions. This could include people working in community services, primary care, or private support as well as specialist NHS and charity services.
We know clinical pressures are high and have made every effort to make this form as simple as possible. Depending on the availability of core data like caseload and waiting times, we expect it to take between X – X to complete.
If you are having difficulty completing the questionnaire there are numerous ways we can support you – please get in touch with professionals@musculardystrophyuk.org
Both the service mapping questionnaire and the health professionals survey will be open until 5pm on Monday 21 September.
You will be able to participate in the Community Survey, a survey to gather views of people living with a muscle wasting condition about accessing healthcare services. The survey will be open in 13 July – 21 September 2026.
You can also ask and encourage your healthcare teams to participate in the service mapping survey; as well as asking and encouraging your individual healthcare professionals to participate in the anonymous healthcare professional survey.
We are expecting the publication of a report with key findings in early 2027.