Muscle disease patients win fight for expert help

advisorsd'Rachel Wells from Crookes who has from Mytonic Dystrophy
advisorsd'Rachel Wells from Crookes who has from Mytonic Dystrophy
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A GROUP of South Yorkshire patients living with muscle diseases are celebrating after their campaigning led to the appointment of an expert care adviser for their condition to be based in the region.

Adult muscle disease patients in South Yorkshire had no access to such a specialist, while children had been forced to share a single care adviser with thousands of others across the East Midlands.

But now through ongoing appeals to the Yorkshire and Humber Specialised Commissioning Group, backed up by the Muscular Dystrophy Campaign and a group of MPs, a dedicated South Yorkshire muscle disease care adviser has been appointed.

The specialist, who started work this week, will provide essential care, support and advice for patients in the area.

The adviser will coordinate healthcare services such as physiotherapy and hydrotherapy, planning hospital visits, giving guidance on adapting homes and provide information on financial support for care and equipment.

Specialist advice on how to treat and manage their conditions will also be available.

Rachel Wells, from Crosspool, who has myotonic dystrophy and joined the fight, said: “This goes to show that campaigning really can work and that all of us are capable of bringing about change. Local muscle disease patients were just not getting enough support. It wasn’t right or fair.”

Myotonic dystrophy patient Shona Davison, from Ecclesall, said: “Being diagnosed with muscular dystrophy is devastating and people just haven’t had the emotional support they need. Our condition is rare. GPs know next to nothing about it, how to manage it or help us. Patients need to be able to speak with a professional who understands.”