Wednesday, January 27, 2010

Families in Wales say NHS has failed people with muscular dystrophy

From BBC News:

A man whose legs have seized due to a lack of physiotherapy has spent the last 11 years sleeping in a wheelchair, Welsh politicians will be told.

Leighton Thomas, who is in his 40s and from Neath, has the muscle disease muscular dystrophy.

His father Ray will tell a cross-party group of AMs, who are working on plans to improve sufferers' lives, that his son has been let down by the NHS.

The assembly government said work was continuing to improve services.

Families of other sufferers will give evidence to the Welsh cross party group for muscular dystrophy at the Senedd in Cardiff on Wednesday.

The meeting will hear how one boy relies on his school dinner lady for physiotherapy, and how other patients have to buy their own wheelchairs because of lengthy waiting times.

The muscular dystrophy group will eventually draw up recommendations aimed at improving and prolonging the lives of patients.

The Muscular Dystrophy Campaign said unlike in England, Scotland and Northern Ireland, Wales did not have a regional care adviser who can help sufferers with home adaptations, equipment grants and coordinating care and treatment.

The charity said Welsh families had to go as far afield as London for basic advice and support.

Ray Thomas, from Neath, said his son Leighton, who has Duchenne muscular dystrophy, a life-limiting condition that causes his muscles to waste away, had spent the past 11 years sleeping in his wheelchair.

Leighton has been forced to do this because his body has stiffened due to a lack of physiotherapy.

Ray Thomas said: "His knees have locked and he can't straighten his legs.

"There's a huge concern from everybody at the moment as to how we're going to get Leighton out of his wheelchair. His muscles and tendons have shortened so much that it's too late for him, he's in his 40s now.

"He has been really let down by the health services in Wales."

Jack Price, six, from Swansea, also has Duchenne muscular dystrophy.

His father Shaun said the lack of physiotherapy available in Wales means they have had to resort to physiotherapy from the dinner lady at Jack's school.

Mr Price said: "We were told we should be doing Jack's physio but we were having trouble because Jack wouldn't let us.

"The school dinner lady is also his personal assistant, so the physio came into school and showed her how to do the exercises.

"I would prefer it if she had been trained in physiotherapy because if she's not doing the exercises quite right, she could be doing more damage than good.

"I've got no qualifications in physio and neither has the dinner lady - so if it's the case that it's acceptable for us to do it then why do we even have physiotherapists?"

Dr Dai Lloyd AM who chairs the cross party group said he was "shocked" that muscle disease patients and their families had to "put up with such poor healthcare in Wales".

He added: "It is unacceptable that anyone should have to travel to England for healthcare that we should be providing in Wales, and I fully support these families in their campaign to improve health services for Welsh muscle disease patients.

"I hope the cross party group can help to change this situation."

More than 70,000 babies, children and adults in the UK have muscular dystrophy or a related condition.

A further 350,000 people are affected indirectly as family, friends or carers.

A spokesman for the assembly government said: "The Health Minister, Edwina Hart, is well aware of the difficult issues around health services for people with neuromuscular conditions and has taken action to improve the care and support to individuals living with these conditions and their families.

"We have been working with the Muscular Dystrophy Campaign on this."