CEO Sarah Ann Moore shares key findings and feedback from our 2024 survey.

The results from our 2024 Annual Service User survey are in!

We are excited to share the full report of our 2024 Annual Service User Survey results. We are very grateful to everyone who took part in the survey and shared feedback on the services that our charity provides. The feedback of our service users is always incredibly valuable in helping us to understand our community’s wants and needs, but even more so this year, when we are working on a new strategy to shape our services for the next five years and beyond.

As in prior years, it is great to see results and feedback that show the enormous impact that we are having on the health, well-being and quality of life of our service users and carers. The survey results report concludes:

It is apparent that in the view of those who responded that the work and support which the MD Support Centre offers is seen as extremely valuable. Respondents put a high rating on the effect that the therapies they receive have in managing their conditions and allowing them to achieve an enhanced quality of life.

• 83% indicated that the support they had received from MD Support Centre had helped keep them out of hospital and reduced their reliance on other healthcare services.

• 81% said the support of the MDSC had either prevented or slowed the deterioration of their condition.

• 87% of respondents agreed that participating in osteopathy had improved their pain control, 78% indicated complementary therapies to be responsible, 75% selected physiotherapy and 49% reported that the use of adapted exercise equipment was responsible.

• 91% agreed that the support of the MDSC, by helping the respondents to an improved understanding and management of their condition, allowed them to feel more confident and in control, and 86% agreed that the MDSC support they had received assisted them to live well with their dystrophic condition. 

• 86% said that our online support had helped them maintain their emotional wellbeing, and 78% said our support helped their family and carers to feel supported.

We have discussed as a team and agreed on the following important next steps and actions:

People unable to get appointments fortnightly and feeling that this is impacting their condition or wellbeing

Two service user respondents noted that they had previously been attending our Centre fortnightly but were finding it more difficult to book appointments due to lack of availability.

Please note that appointments are based on individual needs, and fortnightly appointments are not a default. Your appointment frequency will be discussed and agreed upon with your therapist and may change depending on your needs. Our service is designed to address the need for flexible, long-term support that is accessible to our community. We do not discharge, so service users can return to us for an annual review, or even after several years if they find they are starting to need support. Up to half of our service user community is actively accessing therapy at any given time. Knowing that support is available when needed helps people take control of managing their condition. If you feel you are not able to get the appointments you need, please speak with a member of our team.

To address increasing demand for our therapy provision as our community of service users grows, we are:

• Working hard as a team to better understand demand for our services at each of our locations – analysing the number of individuals who attend and the number of new service users on the waiting list for that location, to enable us to maintain a clinic schedule at each location that is sufficient to meet that need.

• Continuing to actively recruit new therapists to enable us to meet increases in demand as we grow.

• Implementing a new process to address the challenges that late cancellations and “no-shows” cause in managing our schedule and making appointments available. When we have a late cancellation, we are usually unable to offer that to another service user, meaning that a valuable therapy appointment is wasted and pressure for appointments is exacerbated. Our team have discussed and agreed on a new cancellations process to try to better ensure equity of access to appointments and where possible reduce the number of cancellations. Your therapist will speak to you about these changes where relevant to you, and notices will be placed in our locations about the changes.

• Reviewing how we can better communicate your treatment plan and recommended frequency of therapy to assist our reception team with booking and to help our service users manage their expectations.

Dissatisfaction with the music played in Centre

We play music in our Centre to provide a level of privacy to service users attending therapies. It is difficult to play music that caters to everyone’s mood and tastes – but our team have discussed the need to try to select music that makes the environment calmer and more relaxing.

Staff will seek the input of service users and carers onsite in selecting music types/ radio channels. If you feel strongly that something is unsuitable, please tell your treating therapist or a member of the reception team who can try to help.

Concern around the opening of the Birmingham MoveWell pilot clinic and what that means for the Bournville satellite

MD Support Centre is piloting a new clinic at the University of Birmingham’s MoveWell Rehabilitation Centre. Some service users have expressed concerns about the new site and the future of our Bournville Gardens clinic.

We are currently inviting service users to try the new location during the pilot phase and will gather feedback over the coming months to assess its suitability. MoveWell offers a private, cost-effective therapy space with multiple therapy rooms, allowing potential expansion into osteopathy and complementary therapies.

Initial feedback has been very positive, and we encourage service users to explore the facility to test it for themselves. Our Bournville Gardens clinic remains fully operational as we continue to evaluate the best locations that meet our clinical needs.

If you would be interested in an appointment at MoveWell to see for yourself, please speak to Reception.

People are not aware of the online classes that we provide

Some service users told us that they were not aware of or had forgotten about our online classes.

We will raise awareness of our online services by increasing communications about our online group and classes, highlighting them in our eNewsletters, on social media, in our magazine, at our Coventry Centre, and in our satellite clinic locations.

In addition, our therapists will remind service users when treating them face to face about our online services. We have also amended our initial assessment checklist to prompt our therapists to let all new service users know about our online services when they are initially referred to the charity.

Being unable to attend online classes during working hours (as people already have time out of work to attend in-person therapy sessions)

Some service users fed back that online support does not work for them because of logistical issues, such as the timing of the classes that we currently offer not being convenient with their work schedule, or them feeling that they cannot take further time out from their schedule to attend both face-to-face and online services.

It is very challenging to find times that work for everyone – but in planning both our class and events schedules, we will continue to schedule on different days and times to increase fair access. We will use both our Focus Group and mini-surveys in-Centre to ask service users what time/s would be most convenient for them and use this feedback to revisit our current schedule and events programme where possible. We also have several pre-recorded sessions available in the Service User Resources section of our website for you to access at times to suit you.

Disappointment at the Breathing and Mindfulness moving from weekly to monthly

Service users expressed dissatisfaction with the change in frequency of this class. Unfortunately, the change was made due to therapist availability and so could not be avoided. However France is busy recording some videos that service users can use to bridge the gaps between “live” classes, and we hope to share some new content soon.

Generally, the charity is aware that over time, the number of service users attending online therapies (and also other online support that we offer such as our online coffee mornings) has significantly declined. However, we recognise the important role that online therapies have in providing social connection and a lifeline to service users who cannot make it to us as regularly as they might like. We want to grow our online services to continue to offer support – and will not withdraw a class or service without consulting and informing service users in advance, and first trying to encourage improved attendance.

Online sessions not starting on time

We understand that there have been instances where online classes have not started on time resulting in inconvenience or confusion for attendees.

We run classes between treatment slots, so sometimes logistics can cause delays. Our therapists have discussed this and will do their best to ensure that classes run on time in future.

Next steps

We will continue to provide updates on the positive changes that we can make in these areas in our communications and our quarterly Focus Group meetings.

Feedback is critical to demonstrate the impact that we are having, help us to align with our service users’ needs, and enable 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 at MD Support Centre, 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.

Once again, thank you to everyone who completed our survey. We hope you will take part in our next Annual Service User Survey in summer 2025.

Special thanks to Richard Wilson RGN BA(Hons) MA(Econ) MSc, formerly Health Services Research Project Manager and Information Governance Manager in the School of Health and Related Research, University of Sheffield, who kindly donated his extensive skills to complete the full final report.