The latest Service User Survey from the Muscular Dystrophy Support Centre highlights the powerful difference specialist support can make for people living with neuromuscular conditions.
Published annually, the survey provides valuable insight into the impact our services have on people with muscular dystrophy. As well as helping demonstrate the effectiveness of our work, it also helps identify opportunities to enhance what we do, and feeds directly into the charity’s development.
The 2025 survey shows overwhelmingly that access to expert therapies, understanding professionals, and a supportive community is helping people feel more in control, more confident, and better able to live well with their condition.
Confidence, control and independence
Living with a progressive condition can affect every part of life. But the results of the 2025 survey show that the right support can make a real difference.
- 94% of people said our support helps them feel more confident and in control
- 80% said their condition has improved
- 79% said we help slow or prevent deterioration
The life changing impact of this work was reflected in the comments section, with service users commenting:
“Without the support of the centre I would not be able to function on a day-to-day basis.”
“I always leave feeling better than when I arrived.”
Specialist support where it matters most
People with muscular dystrophy often struggle to access specialist therapy elsewhere, with MD Support Centre being only one of two charities nationwide that provide ongoing physical therapies to help adults with progressive muscle-wasting conditions maintain their wellbeing, independence and optimum mobility. Our survey shows just how vital that support is.
- 93% said our therapists play the main role in managing their condition
- 77% said our support reduces their reliance on NHS services
Service users repeatedly highlighted the expertise and understanding of our team:
“The physios are very experienced in neuromuscular conditions and take a holistic view when offering treatment.”
“The centre is my NHS. They have provided me with tailored support that helps me manage my condition.”
Real physical impact
Our therapies are helping people manage symptoms and maintain independence in everyday life. Across all areas, people reported improvements supported by a combination of therapies and equipment.
Across our services, people reported improvements in:
- joint flexibility
- muscle strength
- mobility and balance
- pain management
- ability to carry out daily activities
Many people described not just physical improvements, but the reassurance of knowing their condition is being actively managed.
“The pain would be unbearable without the treatment I receive.”
“It’s helped me get the best out of my body and situation.”
Supporting people to stay in work and live well
As well as supporting physical health, the survey shows that our services impact mental health, employment, and social support. Respondents highlighted that the Centre benefits their self-confidence and emotional wellbeing, while also helping them feel understood and less isolated.
- 65% said our support has helped them stay in work
- 75% said the centre gives them a community to belong to
“Being part of the group sessions has given me friendships and a sense I’m not alone.”
“The centre is a lifeline.”
Looking ahead
As a user led organisation, MD Support Centre is committed to ensuring the voices of the people we support are at the forefront of all we do. To capture this, the survey gave people the opportunity to give their feedback and suggestions on what is working well, as well as ideas to improve further. While the feedback was overwhelmingly positive, people also shared constructive ideas to help us develop and enhance our work. These included increasing satellite locations, making services more accessible and expanding online services.
Our team will review all suggestions to explore how we can continue to improve and develop. We will carefully consider how your suggestions can help shape future changes and the way we grow over time.
We would like to thank everyone that took part in the 2025 survey. These insights are critical in demonstrating the impact we are having, helping us to meet the needs of our community, and enabling us to access vital funding to keep the charity going.
If you have any thoughts that you would like to share on any aspect of what we do please do not hesitate to contact us. You can get in touch at feedback@mdsupportcentre.org, join our quarterly focus group, or speak to a member of our team.
