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.
Lord Dr John Walton, who has campaigned for better care since the 1950s, said: "To discover that there are still islands of this country where the life expectancy and the quality of life for sufferers is little better than I found 50 years ago is incredibly distressing. It cannot be right that a young man in the North-east will live into his 30s because of the excellent care he receives, yet in areas like the South-west, the North-west and Northern Ireland young men still die at 17 or 18.
"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."
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 inquiry heard from parents, like Darren Warren's, forced into dire financial straits because they have to transport their children around the country for appointments and pay for vital physiotherapy, hydrotherapy and equipment themselves. There are four specialist muscle research centres in the UK, but apart from that services are patchy, especially for adults. Patients in Northern Ireland had to fly to Newcastle or London to see a doctor for 15 months after the one specialist consultant there retired. In Wales, patients must now travel to London for respiratory sleep services after the doctor was refused funding to continue her work.
The inquiry also found an over-reliance on charities and dedicated individuals to provide essential care and equipment which should be planned for and provided by the NHS. The Muscular Dystrophy Campaign pays for eight of the existing 13 care advisers who help families navigate through the care system. Philip Butcher, chief executive of the Campaign, said: "We cannot guarantee these posts beyond next March because of the current economic situation. Why won't the NHS pay for essential services which help keep people out of hospital? I have a daughter with muscular dystrophy so nothing shocks me any more. But families across the country are war-weary and just don't have the energy to constantly keep fighting."
The Department of Health said: "We expect the NHS to commission services to meet the needs of its local communities. Muscular dystrophy will be included in an updated list of specialised services to help local NHS organisations plan services."