Summary

This meeting marked the first Service User Focus Group to be led by our new Chief Executive Officer, Zoe Richardson, who introduced herself to members and outlined her commitment to ensuring the group plays an active role in shaping the future of the charity.

The meeting focused on exploring ideas for new and enhanced services that could benefit people living with muscular dystrophy and related neuromuscular conditions.

Members shared their experiences and feedback on a range of potential services, including acupuncture, podiatry and orthotics, talking therapies, and complementary therapies such as reflexology. Discussions highlighted the importance of ensuring that any new services are delivered by professionals with a good understanding of muscular dystrophy, while also considering practical factors such as accessibility, affordability and sustainability.

The group also discussed wider topics including peer support, benefits advice, and how to evaluate and communicate the potential impact of new services. Members emphasised the value of involving service users throughout the development process and recognised that further feedback from the wider community would help shape future decisions.

A number of follow up actions were agreed, including gathering additional feedback on the proposed services, confirming future meeting arrangements, and sharing information from the Aquatic Therapies evaluation.