We campaign for improved health services
We actively campaign for improvements to the support provided to everyone with muscular dystrophy and related neuromuscular conditions in the UK. In 2008, the Muscular Dystrophy Campaign set up patient-led Muscle Groups, providing a way for people with muscle-wasting conditions to influence change in response to evidence of serious inadequacies and inconsistencies in care across the UK. They now operate UK-wide as regional campaigning groups - for the first time giving a voice to people affected by muscular dystrophy and related neuromuscular conditions to speak out for improved health and social care.
Among the groups' campaigning successes are: NHS funding for 31 neuromuscular care advisor posts across the UK; a £1million investment in the South West in new care advisor posts and co-ordinated care through a Neuromuscular Network.
- We helped to launch and develop the cross party groups on muscular dystrophy in each of the four parliaments of the UK; ensuring that ministers, civil servants and our elected parliamentarians take urgent action to fill the gaps in specialist care and services.
- Over the last three years we secured £2.4 million worth of NHS funding towards specialist neuromuscular services.
- The Muscular Dystrophy Campaign's campaigning and awareness raising activities have led to an improvement in specialist care and access at a local level. Between 2009 and 2011 the number of NHS funded Neuromuscular Care Advisors has more than doubled - from just 13 to 30.
- We use the media to make fundamental changes for the benefit of our patients; fighting to change laws blocking essential research into conditions such as mitochondrial myopathy.
- Campaigning through the media has yielded real results, securing extra NHS funding for vital care advisors in areas failing our families and ensuring the voice of our patients is at the cutting edge of national debate on NHS reform such as on BBC's Newsnight.
- Our award winning national network of young campaigners, the Trailblazers, has grown to 380 members, who campaign on issues such as access to transport, education, leisure services, employment and tourism. Their latest documentary, Lights, Camera, Access, secured the support of a number of celebrities including Miranda Richardson and Sigourney Weaver.
- In 2011 the Muscular Dystrophy Campaign's work in securing extra NHS funding for vital care advisors saw them awarded Campaigning Team of the Year by the Charity Times who recognise leadership and professionalism - a great accolade for the hard work by the team and the host of volunteer campaigners across the UK.