Support at the Charing Cross Hospital clinic

Yesterday, I sat in on Dr Wojtek Rakowicz’s neuromuscular follow up clinic at the Charing Cross Hospital, Hammersmith.

Visiting clinics is a really important and enjoyable part of my work at the Muscular Dystrophy Campaign. Not everyone has heard about our advocacy support service at the charity and so having a representative from the advocacy service at clinics means we are on hand to offer advice and support. As Dr Rakowicz pointed out, there is currently no cure for muscular dystrophy and related neuromuscular conditions and often practical support is a vital part of helping patients with the long term management of their conditions.

The advocacy service is here to support anyone affected by muscular dystrophy and related neuromuscular conditions that is experiencing difficulties getting the services they are entitled to. People come to us with a variety of issues including difficulties getting an appropriate care package, applying for housing adaptations or access to specialist healthcare services. The advocacy team also offers free advocacy, support and advice to anyone who is experiencing difficulties with their local services. 

 Whilst the support given to patients by neuromuscular specialists like Dr Rakowicz is excellent, it is very apparent that there is a lack of adequate care advisor support in London. This means there is a gap in terms of practical and emotional support for families affected by muscular dystrophy and related neuromuscular conditions which needs to be urgently addressed.

 We have published an advocacy pack which provides comprehensive information on the major issues facing people with muscle-wasting conditions including access to Disability Living Allowance, Employment Support Allowance and housing and care packages. 

If you are struggling with issues please get in touch by calling 0800 652 6352 or email info@muscular-dystrophy.org

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