Advocacy

provided by Muscular Dystrophy UK

Our advocacy team is here to fight for anyone affected by a muscle-wasting condition (WHICH INCLUDES PEOPLE WITH CMT) who is experiencing difficulties accessing the services, benefits or equipment they are entitled to. Since the advocacy service launched in 2011, we’ve secured approximately £1,679,745 worth of support.

Our advocacy team recently secured a care package worth £28,175 for Susan’s son Michael who has Becker muscular dystrophy, after the Health and Social Care Trust had cut his care package. With our support, Susan spoke to the local press, which caught the attention of her local MP who offered his support which helped us highlight Michael’s needs and how vital his care package was.

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. The advocacy team also offers free advocacy, support and advice to anyone who is experiencing difficulties with their local services.

We have also published an Advocacy Fact Pack which provides comprehensive information on the major issues facing people with muscular dystrophy and related conditions including access to Disability Living Allowance, Employment Support Allowance and housing and care packages.

The advocacy service is free of charge so if you are struggling to get the care and support you are entitled to, please contact us on 020 7803 4800. Alternatively, you can send us an email at info@muscular-dystrophy.org.