Eleanor flexes political muscle in fight for better muscle disease services in Wales

9.09.00am GMT Mon 1st Feb 2010

North Wales AM Eleanor Burnham brought her political muscle to bear on Welsh muscle disease services as she backed calls for urgent improvements.

Welsh Liberal Democrat Eleanor Burnham AM attended the Welsh Assembly's Cross Party Group on Muscular Dystrophy (CPG) session where over 40 patients and families, who are desperate to see improvements to health services for muscle disease patients in Wales, related their shocking experiences of services. Eleanor Burnham pledged to support their campaign to secure better health services.

These were some of the concerns the families discussed.

There is no regional care advisor in Wales, despite some regions of England having up to five of these posts. This means there is no one to turn to for advice and support about equipment, home adaptations, care and financial issues.

Wales is sorely lacking in physiotherapy for muscle disease patients, a vital service - one boy is even receiving physiotherapy from his school dinner lady.

Patients are waiting a huge amount of time for basic equipment such as wheelchairs and many end up buying these themselves, which cost thousands of pounds. One man has been sleeping in his wheelchair for 11 years because his family cannot find a suitable bed.

There is a serious problem with the lack of information available to families about muscular dystrophy once a patient is diagnosed - many feel they are abandoned to research the condition themselves.

The CPG meeting on Wednesday (27 January) evening, chaired by Dr Dai Lloyd AM, was a chance for Welsh families living with muscle disease to give evidence about their experiences of health services, which will be used to form the CPG's thorough investigation of muscle disease services in Wales. This will also include recommendations for how services can be improved across Wales.

Commenting about services in Wales, Eleanor said,

"It is clear that Wales is lagging behind much of the UK in the specialist neuromuscular services it provides, and is the only country in the UK with no muscular dystrophy care adviser.

"It is vital to ensure that all patients across Wales have access to timely specialist diagnosis, assessment, treatment and on-going care. The level of specialist care in Wales is currently unacceptable and inadequate."

AMs from across the parties as well as neuromuscular consultants and health staff based in Wales joined the meeting in support of improving neuromuscular services.

An announcement was made at the end of meeting that the report into muscle disease health services in Wales will be called the Thomas Report. This is in recognition of Ray Thomas from Neath, a dad who lost one of his sons to muscle disease and has spent over 30 years campaigning for better muscle disease health services for his other son who has Becker muscular dystrophy. Ray's son Leighton has been forced to sleep in a wheelchair for the last 11 years.

Over the coming months the CPG will be gathering evidence about muscle disease healthcare in Wales to produce their final report later in the year.

For more information about muscle disease and the Muscular Dystrophy Campaign go to www.muscular-dystrophy.org.

The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease. It has pioneered the search for treatments and cures for 50 years, and is dedicated to improving the lives of all people affected by muscle disease.

It funds world-class research to find effective treatments and cures; provides free practical and emotional support; campaigns to raise awareness and bring about change and awards grants towards the cost of specialist equipment.