Summary

This meeting provided members with an update on recent developments across the Muscular Dystrophy Support Centre, including the appointment of a new Service User Participation Worker, progress on the new website, new partnerships, recruitment of additional physiotherapists, and plans to expand the number of Wellbeing Hubs offered each year.

The group also received an update on plans to secure National Lottery funding for new services. Following feedback from previous Focus Group discussions, proposals had been developed around acupuncture, foot health and orthotics, and mental health support. Although the initial funding proposal was not progressed due to changes in the Lottery’s funding priorities, members reaffirmed the importance of these areas and agreed they should continue to be explored through alternative funding opportunities.

Members also discussed the possibility of a future open day and patient information event, sharing ideas on how it could best support people living with muscular dystrophy. The meeting concluded with a discussion about developing practical, service user led resources to help people navigate the NHS, with the group expressing strong support for the idea.

A number of follow up actions were agreed, including continuing to involve members in service development projects, providing updates on future funding opportunities, and exploring the creation of practical NHS guidance resources with service users.