Monday 25 February 2013
Regional Muscle Groups - making an impact locally
In 2008, the Muscular Dystrophy Campaign set up Muscle Groups across the country to empower people with muscle-wasting conditions to influence change, improve services and offer peer to peer support. Guest speakers at meetings include MPs, NHS representatives, local authorities and other voluntary organisations and are key to enabling the Groups to have an even greater impact regionally.
Among the Muscle Groups’ campaigning successes has been: increased NHS funding for 31 Neuromuscular Care Advisors across the UK; a £1million investment in the South West in new posts and co-ordinated care through a Neuromuscular Network. Group meetings are a forum for peer support and advice on condition management, and for keeping members informed on local services and on the charity’s other support programmes.
Speaking about her first time visit to a muscle group, Emily Beale, whose son has Emery Dreifuss muscular dystrophy said:
I felt so welcomed, and supported by all those I spoke to. There was a real feeling of understanding and concern because everyone present understood personally what it is to live with a neuromuscular condition. Before Saturday’s meeting I was completely unaware of the hard work and dedication so many people had made on my families behalf for improved services in the south west. Our family is now determined to join in this work of campaigning, supporting and fundraising for a continuation of these services; and not just for the South West but nationwide.
Read more about Emily's first muscle group meeting.
The current round of Muscle Group workshops are looking at the transition from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) that will be taking place from April 2013. We have had lively discussions which have helped to address supporters concerns about the changes later this year.
We are always looking for new members like Emily so please do get in touch or visit our website to find out more about the next meeting in your area. You can also email r.johnson@muscular-dystrophy.org or call 0207 803 2865 for more information.
