14 Mar 2010

An army of 19 new and newly secured care advisors will be joining the fight against muscle disease across the UK with the Muscular Dystrophy Campaign.

Thanks to the hard work of campaigning patients in 10 UK regions and the Muscular Dystrophy Campaign, babies, children and adults living with muscle disease will now have access to 19 regional care advisors, who provide vital care co-ordination, advice and guidance on services, equipment and funding. They are also an important point of contact for families to answer their questions about these rare and devastating conditions.

Of the 19 posts, eight are brand new roles that have been created by the NHS, including five in the South West, and one each in Hull, Sheffield and Southampton. The rest were either fully or part funded by charity money from the Muscular Dystrophy Campaign, but health bosses have now agreed to foot the bill.

Regions benefiting from the care advisors include:

- Scotland where funding for the Glasgow and Edinburgh care advisors has been picked up by the NHS;
- Yorkshire and Humber where the NHS will be funding the existing Leeds post and will create new posts in Sheffield and Hull;
- South West England where five new care advisor posts have been created;
- South Central England where the Oxford role will be NHS funded and a new Southampton post has been created;
- North West England where the two posts based in Liverpool will now be NHS funded.

The other new or newly funded care advisors will be based in London, the West Midlands, the North East, the East Midlands and Northern Ireland.

Last year's Walton Report, an in-depth investigation into muscle disease services across the UK, highlighted the huge gap in care for many people who either had no access at all to a care advisor or had to travel huge distances to see one. Regional Muscle Groups of campaigning patients and families set up in response to the report to fight for better care, and one of the main issues they have campaigned about has been the lack of care advisors.

Tracey Franklin from Brough in East Yorkshire has a 13-year-old son, Jack, with Duchenne muscular dystrophy. The condition causes his muscles to waste and is life limiting. She said:

Hull is so close by for us, so to have someone just 20 minutes away who I can call if I have issues to discuss or even if I'm just having a bad day will be amazing. Before, there was one care advisor covering the whole region, which was ridiculous.

It's a good starting point but more still needs to be done. Now we've got the momentum started we need to keep it going.

Roger Wild, from Reading, has spinal muscular atrophy which causes his muscles to weaken and means he needs a wheelchair and round-the-clock care. He said:

This is excellent news, both for people in Oxford and for people in Southampton, who won't have to travel such long distances anymore. I think the posts will immediately prove their value.

I don't wish to look a gift horse in the mouth, but I would like to see care advisors in the East and West of our region as well, because South Central covers such a huge area.

But despite the successes brought about by these determined patients and their families, services for people with muscle disease are still far behind what they should be. For example, the London care advisor serves 7,500 muscle disease patients in the region but only sees children. And two regions, Wales and the South East Coast, still have no care advisor at all.

The Muscular Dystrophy Campaign's head of policy and campaigns Nic Bungay said:

We are absolutely delighted at these 19 care advisor posts being either created or funded by the NHS. They will make an enormous difference to the lives of muscle disease patients and their families in these regions.

But there is still a lot of work to do in securing care advisors and health services for people with muscle disease in other areas of the UK. It is unacceptable that there should still be regions with no care advisor at all and that Welsh patients should have to travel to England for a basic point of contact.

To join the fight for better muscle disease care in your region or to find out more about the work of the Muscular Dystrophy Campaigng http://www.unistemcells.com/.