Muscle disease care 'falls short'

Wales is the only country in the UK where people with neuromuscular conditions cannot access the help of specialised advisors.
In England, Scotland and Northern Ireland - but not Wales - patients receive help in accessing medical and social services through family care advisors.
The Muscular Dystrophy Campaign claim this is not the only aspect of care in Wales which falls short.

Dr Mark Rogers, a consultant clinical geneticist at University Hospital of Wales (UHW), Cardiff, told BBC Wales' The Politics Show there is not even a recognised source of funding for neuromuscular services in Wales.

Nick Jones, of Wrexham, has Duchenne Muscular Dystrophy, one of a number of life-limiting diseases which weaken and/or waste muscles. He has been waiting more than a year for a wheelchair which fits his legs. With a family care advisor to help attain health and social services, things might be different.

Mr Jones said: "There are people out there who need help and it's helpful to have somebody on the end of the phone who you can get hold of as quickly as you can and they're always there to help you out when you need something sorting, you know?

It's there in other parts of the country, it's just in Wales it still seems to be in the dark ages, if you get what I mean

Nick Jones
"Because otherwise you're just isolated and there's not much you can do really and that makes living with the condition a bit more stressful."
Forty miles across the English border in Warrington, the situation is very different for another young man with the same condition.
Andrew Duffy and his mother, Anne, greatly appreciate the work their family care advisor has done for them.

For example, she acted as an advocate in persuading their local authority to help provide alterations to their home to accommodate Andrew's condition.
Mrs Duffy said: "When you've got what you assume is a healthy four-year old and you're told he won't be walking by the time he's between the ages of eight and 11, and then you realise that you're going to have to change your home and your whole lifestyle, it's reassuring that there's going to be somebody there along the way who can tell you what you need and also do things like liaise with social services."

It is argued that the non-availability of family care advisors is only one aspect of how care for people with neuromuscular conditions falls short in Wales.

Andrew Duffy appreciates the work his family care advisor has done

According to the Muscular Dystrophy Campaign, Wales provides only a fifth of clinical activity by specialist doctors, nurses and physiotherapists compared to England and Scotland.
Mr Jones said: "It's there in other parts of the country, it's just in Wales it still seems to be in the dark ages if you get what I mean.

"The level of care you get in Wales is just not up to scratch at all really. It's just not worth it."
The Muscular Dystrophy Campaign's director of policy, Robert Meadowcroft, said services for people with neuromuscular conditions in Wales had declined over the past 10 years.
He said: "In specialist posts, people have retired or moved on - they've not been replaced.
"The rather larger worry is they're going to decline further, we believe, in the next two years unless action is taken."

Funding
Perhaps the major difficulty facing specialists like UHW Consultant Clinical Geneticist Dr Mark Rogers is that Wales has no properly defined funding mechanism to provide for the 3,000 or so people here with neuromuscular conditions.

Local Health Boards can turn away funding bids arguing they're too "specialised".
But since such conditions, though rare, haven't actually been classed as "specialised" the all-Wales specialised commissioning body Health Commission Wales is not bound to fund them.
Dr Rogers said: "There's no specific funding earmarked that I'm aware of in Wales at all for neuromuscular services as a whole.
"It's felt that they sort of come within possibly neurology, possibly other (areas).
"There isn't somebody who I can go to and say "please will you consider this bid for some money?".
"It's not even a case of them rejecting the bid. It's a case of I can't even go anywhere."

'Review'
Health Minister Edwina Hart declined to be interviewed.
A Welsh Assembly Government spokesman said: "We are committed to ensuring people have prompt access to safe and sustainable high quality and well co-ordinated neuromuscular disease specialist services, including those for muscular dystrophy, as locally as possible.
"The implementation of the outcome of the independent review of Adult Neuroscience Services will improve the provision of services over time".