Muscle disease patients 'failed'

Tissue degenerates in conditions like muscular dystrophy

Up to 3,000 patients with muscle degenerating diseases are being failed by the Welsh NHS, a report says.

The Muscular Dystrophy Campaign claims a lack of specialist services means life expectancy for sufferers is lower than Scotland and England.

Sufferers have to travel to England for certain services or receive general, non-specific physiotherapy.

The Welsh Assembly Government says it will consider the findings as part of an ongoing review of neurosurgery.

Diseases such as muscular dystrophy can lead to rapid weakening of a patient's body.

Care needs to be regular and specific to their needs, but Wales lacks a specialist centre, forcing patients to either go for treatment in England or accept physiotherapy which may not be the most appropriate.

CAMPAIGN REPORT Services are "variable" across Wales, with almost three out of four local health boards failing to support a muscle clinic for adults or children Patients in Wales are currently being forced to travel to London and Winsford, Cheshire to receive essential treatment The services which exist are "vulnerable" due to a dependence on a handful of leading clinicians, who could move on or retire Ventilation prolongs life but is "not provided in a systematic way" across Wales Funding constraints stop one health board commissioning services from a specialist centre in Oswestry Funding for diagnostic tests for Welsh patients at recognized specialist centres in England is not consistent Source: Building on the Foundations: The Need for a Specialist Neuromuscular Service Across Wales

The report highlights difficulties involving access to specialist services and the distances patients have to travel for treatment.

Seven-year-old Rhys Jenkins and his family travel from the Vale of Glamorgan to Hammersmith in London twice a year so he can receive specialist treatment for Duchene muscular dystrophy.

As the journey takes three hours each way, the family has to spend the night in London, taking time off from school and work.

His mother, Helen Jenkins, said the specialist clinic at hospital offers a range of professionals, including physiotherapists as well as specialists in respiratory and cardiac medicine.

She said: "We would simply be seeing a neuromuscular consultant in Cardiff.

"She works alone, she is not able to benefit from the team of professionals and the input that the neuromuscular consultants benefit from at the Hammersmith.

"We would be missing out on people like the family officer as well."

Steve Higginson, from Colwyn Bay, has spent 10 years making the two-hour round trip to Cheshire for treatment for Becker muscular dystrophy.

"I found many parts Wales to be a desert for the treatment of patients with conditions like mine," he said.

'Huge advances'

The report by a lobbying group of doctors and patients says investment is needed to catch up with the rest of the UK, as the life expectancy of Welsh patients is falling behind.

Dr Louise Hartley, a consultant paediatric neurologist, said: "We know that in the past two decades there have been huge advances in the improvement of care for these patients, improving both survival dramatically and quality of life."

At the best centres in the UK, in Scotland and England, survival had been increased from late teens well into adulthood, accompanied by a dramatically improved quality of life, she said.

But, she added: "Children in Wales and adults in Wales are not experiencing that improval by any means."