2019 Service User Survey Results

We are pleased to be able to present the results from our 2019 Service User survey. The survey was conducted between 18th April and 8th June and was promoted at our open day, through our website and in our centre. The survey was available in paper and online, with support to complete it where required. We had 34 responses- which represents around 20% of current service users.

Here are our key findings:

The gender split was 56% male 44% female. 50% of service users were 50 years old or older, and the most common reported condition was Facioscapulohumeral (FSH) although 9 different types of Muscular Dystrophy were reported.

The majority of service users attend on a monthly (50%) or a fortnightly (30%) basis.

Therapies- Of those who receive Physiotherapy, Osteopathy and Hydrotherapy, 100% said it was either somewhat or very beneficial. 89% of people receiving Hydrotherapy and Complementary therapies found them somewhat or very beneficial.

When asked about the impact the MD Support Centre has on wellbeing, people responded positively, 85% of service users said it improves their self-confidence and 91% said it helps them to understand and manage their condition confidently.


  • 100% say their therapy partly or fully keeps their joints flexible
  • 97% say their therapy partly or fully maintains muscle strength
  • 96% say their therapy partly or fully keeps them walking (of those who this applies to)
  • 93% say their therapy partly or fully keeps them in work (of those who this applies to)
  • 92% say their therapy partly or fully prevents falls or accidents
  • 88% say their therapy partly of fully enables them to manage pain
  • 100% say their therapy partly or fully keeps them out of hospital (of those who this applies to)

97% of service users said the MD Support Centre slows or prevents deterioration of their condition.


  • Only 12% of those surveyed had unplanned hospital admissions in the past 12 months
  • 100% of those who received our physiotherapy when they had acute or urgent issues said this avoided a trip to their GP/ hospital/ other NHS department

When asked ‘Which professional do you feel plays the primary role in helping you manage your condition?’ 61% responded an MDSC therapist.

Friends and family test- 100% of respondents would be likely or extremely likely to recommend us to friends and family if they needed similar treatment

What we can change- the main feedback we received was on difficulties travelling to the centre, we are working to address this by expanding our satellite provision.

We also asked people what other services they would be interested in accessing, of these the most popular were: yoga, a neuromuscular advisor, advocacy and counselling. We will look into all of these.

Service User Comments- our final question asked for any other comments, and here are some of the responses: