We provide care and support
The Muscular Dystrophy Campaign provides vital information about care and support, peer-to-peer support networks and an advocacy service, supporting more than 5,000 families every year. Last year we delivered 10,420 requests for literature and 3,392 requests for telephone and email support. In an average month more than 800 of our free publications are downloaded from our website.
Through our advocacy service, which is dedicated to helping anyone affected by muscular dystrophy and related neuromuscular conditions who is experiencing difficulties getting the services or equipment they are entitled to. In 2011, we secured approximately £300,000 worth of support that had previously been denied.
We are willing to look at any case put in front of us, for example, getting an appropriate care package, applying for housing adaptations or access to specialist health care services or equipment. The advocacy team also offers free advocacy, support and advice to anyone who is experiencing difficulties with their local services.
- We have built direct contact between the charity and beneficiaries and the Muscular Dystrophy Campaign now has contact with more than 11,000 individuals directly affected by muscular dystrophy and other related conditions and 2,300 health professionals.
- Our advocacy service has negotiated an additional £100,000 for patients affected my muscular dystrophy in the first six months of 2011. This is for services including additional care hours from local authorities and the NHS, Disabled Facilities Grants for people whose applications had been turned down, and Disability Living Allowance payments for people who had been told they were not eligible for this vital support.
- The charity helped establish, develop and continues to fund three specialist Muscle and Nerve Centres (in London, Oxford and Newcastle) that provide a multi-disciplinary approach to the management and support of those affected by muscular dystrophy and other related conditions, offering clinics for more than 3,600 people each year; and training for clinicians, clinical trial coordinators and clinical research fellowships.
- The charity awards grants to individuals to enable them to purchase specialist mobility equipment not available on the NHS, which are often prohibitively expensive and unaffordable. This equipment enables independence, and enhances quality of life. Since 2006 we have provided £4.2 million in equipment grants to 1,400 families across the UK.
- The charity has awarded more than 6,000 grants totalling more than £6million towards specialist equipment such as powered wheelchairs in the last 25 years to children and adults.
- We receive on average 250 applications seeking funding towards the cost of specialist equipment every year. In 2010 we supported over 400 children and young people by fully-funding equipment and wheelchairs.