The Muscular Dystrophy Campaign has launched a new campaign to help children with the disorder progress into adulthood.
The charity’s study of 20 university students living with muscle disease found that most had trouble organising their care through social services.
Some social services departments struggled to know what “feasible care” was needed for disabled students going away to university.
Those students with muscle disease who lived at home felt they had missed out on key parts of university life.
Speaking at the launch of the Muscular Dystrophy Campaign’s national conference in Westminister, Kevin Barron, chair of the commons health select committee, said: “Despite young people with muscle disease living longer, there is evidence from several UK studies to suggest that the quality of services declines once adulthood is reached.”
Kate Parkin, charity trustee, said: “Young adults with disabilities need support and advice throughout their journey to adulthood.
“This needs to be provided in a holistic way, looking at all areas of their lives and how medical, care and education of work needs impact on each other.”