Muscular dystrophy centre bid for Capital

Published on Thursday 9 October 2008 09:59

A CHARITY is in talks with the Scottish Government to create a specialist centre for muscular dystrophy in Edinburgh.

Action Duchenne has held several meetings with senior figures in Holyrood about the possibility of creating the facility, which would serve the whole country.

Recent reports have suggested sufferers of the degenerative, muscle-wasting illness north of the Border not only have a poorer quality of life, but live shorter than those in England and Europe, where specialist units are the norm.

Leading consultants have also backed the campaign by the charity – which works for sufferers of Duchenne's muscular dystrophy, which makes up about 70 per cent of cases.

John Miller, an Edinburgh-based campaigner for the charity whose nine-year-old grandson has the disease, said he was optimistic a centre could be created within a few years.

He said: "It would make such a difference to not only boys with the disease but their families as well. As it stands, they have to go all the way to Newcastle for the nearest specialist centre.

"It could also provide a base for scientists here to make progress with research and clinical testing, and make life easier for people with the disease and help a lot of children get diagnosed quicker, rather than fighting for tests and checks at GP surgeries.

"I've been very impressed with the meetings so far and am confident we can see some change."

The disease affects around one in 3500 boys, and usually manifests itself at the age of three or four, leaving the sufferer in a wheelchair before they are a teenager, with few living beyond the age of 20.

Nick Catlin, Action Duchenne's chief executive, said: "We are advocating a shake-up in the services and care in Scotland. The charity wants to see a centre of excellence for neuromuscular disease set up in Scotland, which can then disseminate best practice across the country, giving patients and their families a level of care on a par with those in Newcastle and London."

In a letter to Edinburgh-based campaigners, First Minister Alex Salmond outlined his commitment to improving the level of care for sufferers and their families.

He said: "I would like to give you a clear assurance that the Scottish Government recognises the concerns which have been expressed.

"We are determined that standards of care and life expectancy match those in other countries. We will use funding we have allocated to make sure people with muscular dystrophy and their families get the totality of care they need."