Through the Department of Health funded Bridging the Gap project the Muscular Dystrophy Campaign is bringing together people to help improve services improve services and the quality of life for people with muscle-wasting conditions in their region.
In each region there are neuromuscular champions, who represent the local Muscle Groups at the Bridging the Gap project's regional neuromuscular forums.
Vivek Gohil, who has Duchenne muscular dystrophy, is a neuromuscular champion in the East Midlands who has contributed a lot of important work to improve the quality of life of people living in the area. In 2010 Vivek attended a national Muscular Dystrophy Campaign conference where he learnt about the Trailblazers group and was inspired to join their mission of working together to improve services across the UK.
On becoming involved with the Muscular Dystrophy Campaign Vivek said:
I became a neuromuscular champion as I want to help future generations who have neuromuscular conditions have a better quality of life than past generations have had. I also wanted to enrich my life by doing something worthy and making a big difference to policies and the treatment of people with neuromuscular conditions.
Vivek, who was awarded a young campaigner award at the Muscular Dystrophy Campaign National Conference in 2012, has represented his local Muscle Group at the forums in the East Midlands, highlighting his concerns on local physiotherapy services and the need for more neuromuscular support in Leicestershire.
Another neuromuscular champion in the East Midlands is Margot Keats, who has been involved with the Muscular Dystrophy Campaign for around 27 years after being diagnosed with Facioscapulohumeral muscular dystrophy. Upon learning about the various different types of muscle-wasting conditions Margot decided to raise awareness about the long term effects of the conditions.
One of Margot's key goals has been to emphasise the importance of proper exercise routines, to educate people with muscle-wasting conditions, by working with consultants and clinicians such as Margaret Phillips and attending the working groups that have been organised as a result of the Bridging the Gap project.
Regarding her work with the Muscular Dystrophy Campaign, Margot said:
Over the years that I have been involved in the Muscular Dystrophy Campaign I have attended various different events including the APPG on Muscular Dystrophy in parliament. My main aim has always been to campaign on the important issue of exercise for people with muscle-wasting conditions and hope that in the future hydrotherapy pool services will be much better and more readily available.
For more information about the campaign for improved access to specialist neuromuscular care in Leicestershire and the East Midlands, get in touch on 020 7803 2865 or by email at firstname.lastname@example.org