Thousands of children and young adults with muscular dystrophy are dying needlessly because of inadequate NHS services in parts of the UK, according to a damning report published tomorrow. Patients in some areas die on average 13 years earlier than those in other areas because they have no access to specialist care to treat respiratory and cardiac problems typical in these life-threatening conditions, according to an inquiry by the All-Party Parliamentary Group on Muscular Dystrophy.
The Walton report severely criticises the Government for ignoring the plight of thousands of sufferers and their families. It is “totally unacceptable” for Britain to lag so far behind other countries such as Holland and Denmark where sufferers enjoy longer, more independent lives, it says. There are an estimated 60,000 people with muscular diseases such as Duchenne muscular dystrophy in the UK, though the Government does not collect accurate data. More than 60 different conditions have been identified. Muscles and nerves anywhere in the body can be affected, causing severe weakening and muscle wasting. It is more common in boys.
“The Government must introduce a national commissioning programme for neuromuscular diseases so every patient can see the specialist doctors and physiotherapists they need, without having to travel miles or find the money or else just go without.”