Muscular Dystrophy UK has been asking adults with Duchenne muscular dystrophy for their views on how to improve care for people with this condition.
Over 80 adults participated in our three month consultation, which will help inform the care recommendations for adults living with Duchenne.
The recommendations will outline the key interventions and care that should be available to any young adult with Duchenne, and will be the first formal document created to outline best-practice care for adults with this condition. They are being developed by the Adult North Star Network's collection of neuromuscular expert health professionals and will be published later this year.
There were a number of key recommendations made by adults with Duchenne in response to our consultation about how their care could be improved:
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Improving access to specialist physio
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Providing specialist care closer to home
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Improving support at the point of diagnosis
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Increasing awareness about research opportunities
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Improving access to NHS wheelchair services
The North Star network was originally set up to help drive improvements in services and set national standards of care for children living with Duchenne. Since then, children with the condition now benefit from a national database which logs their clinical data, and has led to major breakthroughs such as the use of steroids in children with Duchenne. The Adult North Star network is working to ensure the same level of support is provided in adult care.
Further information on the publication of the care guidelines will be made available on our news page later this year.
If you would like to let us know your views on care for adults with Duchenne then get in touch with our Campaigns team campaigns@musculardystrophyuk.org.