'Specialist care is essential and yet is restricted for many muscle-disease patients in Wales' Review planned after report finds many are forced to travel to England to get treatment.
THE ongoing review of neurosciences in Wales will also examine what services are available for children and adults with rare muscle conditions.
The Welsh Assembly Government announced the move after receiving damning details of how some patients with muscular dystrophy in Wales are being forced to travel hundreds of miles to England for specialist treatment.
There are few services for muscular dystrophy in place in Wales and even these depend on a handful of clinicians - making them vulnerable if the health professionals move jobs or retire.
And the Muscular Dystrophy Campaign's own research - based on answers to Freedom of Information requests - reveals that three out of four local health boards do not support a muscle clinic for either adult or child patients.
The Muscular Dystrophy Campaign and Genetic Interest Group are calling on the Welsh Assembly Government to ensure all patients with a muscle disease have access to the expertise needed to treat their conditions.
More than 3,000 people in Wales are affected by a neuromuscular condition, which weaken or waste the muscles.
Dr Louise Hartley, a Cardiff-based consultant neurologist, said, "Specialist team care is essential and yet it is restricted for many muscle disease patients in Wales. Too often specialist care is vulnerable and heavily dependent on a few doctors, nurses and physiotherapists, rather than embedded in a properly resourced, long-term service.
"The life expectancy and quality of life for boys with the fatal condition Duchenne muscular dystrophy is improving throughout the world because of proper multi-disciplinary care.
Children in Wales must not be left behind."
Steve Higginson, 49, from Colwyn Bay, has struggled to find appropriate care for his Becker muscular dystrophy for many years. He has been making a weekly two-hour round trip to the Neuromuscular Centre in Winsford, Cheshire, for the past 10 years for specialist physiotherapy.
Mr Higginson said, "I found many parts of Wales to be a desert for the treatment of patients with conditions like mine. I've been going to Winsford for 10 years and if I hadn't my condition would be much, much worse because nowhere in Wales provides the same service.
"Expecting disabled people and their families to travel long distances just to gain access to the clinical care they need is shocking."
A group of clinicians, patients and campaigners last week presented a report to First Minister Rhodri Morgan outlining how the NHS is failing them.
The report, Building on the Foundations: The Need for a Specialist Neuromuscular Service Across Wales, also reveals that Welsh NHS commissioners will not consistently fund diagnostic tests for Welsh patients at recognised specialist centres in England.
It claims this results in some patients receiving "inadequate" diagnosis compared to the rest of the UK.
And the report said one LHB is unable to commission services at a nearby specialist centre in Oswestry because of "funding constraints".
Philip Butcher, chief executive of the Muscular Dystrophy Campaign, said, "People with rare illnesses are living longer thanks to medical advances and yet NHS services in Wales are failing to meet this demand.
"It is essential that Health Commission Wales recognises the specialist nature of the care needed by patients with neuromuscular condition and ensure that such services are available to all patients in Wales.
"We are calling on HCW to undertake an independent review of services as a matter of urgency."
A spokesman for the Welsh Assembly Government said, "We welcome the work by the Muscular Dystrophy Campaign on how care can be improved for people living with the neuromuscular conditions.
"The Welsh Assembly Government will carefully consider the recommendations and the Health Minister Edwina Hart will feed this report into the ongoing independent review of adult neurosciences services in Wales, which includes neuromuscular services."
TWICE a year seven-year-old Rhys Jenkins Roberts and his family make the long journey from South Wales to London to receive specialist treatment.
It means two days off school for Rhys, two days off work for father Andrew, 39, and an overnight stay close to the Hammersmith Hospital.
But. despite the long and "disruptive" journey, the family who live in Penarth are grateful that they do at least have access to such specialist services.
Rhys's mother Helen, 37, a former chartered civil engineer, said, "It is disappointing that the services people in England and Scotland take for granted are not available here."
Rhys was diagnosed with muscular dystrophy when he was four years old, while the family were living in London.
They have continued to receive care at the Hammersmith, two years after moving to Wales.
Rhys spends a day at the Hammersmith Hospital every six months, during which he will see a team of specialists, including a physiotherapist, a family officer who provides support on more general issues about living with muscular dystrophy, and a neuromuscular nurse.
His overall health and the progression of the condition will be fully assessed and any necessary changes will be made to his care and management plan for the following six months.
"We are the fortunate ones," said Helen, who has another son Rowan, three.
"There are a lot of other children and adults with neuromuscular disorders who don't have such access."
JOURNEY Rhys Jenkins Roberts, right, with his younger brother Rowan, has to travel to London with his family twice each year to undergo specialist treatment for his condition
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|Publication:||Western Mail (Cardiff, Wales)|
|Date:||Feb 11, 2008|
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