Friday 7 May 2010

Wales to get two muscle disease care advisors

Welsh families with muscle disease have got the good news they have been waiting for - they will get two NHS-funded care advisors.

Regional care advisors are absolutely vital for anyone with a muscle wasting condition as they provide invaluable advice and support on care, specialist equipment and grants. But up to now, families have had to travel to England for appointments.

For families across Wales living with muscular dystrophy, this is a huge step forward in the level of care they receive.

The First Minister, Carwyn Jones, confirmed that two care advisors would be appointment - one for North Wales and one for South Wales - in response to a question in Plenary on Tuesday, 20 April.

Lynne Taylor from Cardiff has a 15-year-old son, Ross, with Duchenne muscular dystrophy, a life-limiting, muscle-wasting disease. She said:

It's really important for the care advisor to be there at diagnosis. At the moment families are being diagnosed and having nobody there to help them. They are given devastating news and then just left to get on with it.

The care advisor can act as an advocate because often families have no energy to fight or no knowledge of who to go to and what services to get for their child. When I've got questions about services, in the past I've had to call Great Ormond Street but now I'll be able to speak to someone face to face, which all families should have the chance to do.

Last month the Cross Party Group for Muscular Dystrophy, chaired by Dai Lloyd AM, met at the National Assembly where AMs, clinicians and people with muscle disease met one of Liverpool's care advisors. They heard about the huge difference a care advisor can make to families living with muscle disease and so are even more pleased to learn Wales will now have this service, too.

At the meeting, the Liverpool care advisor Shirley Crosby said:

We give a broad holistic service to families and patients at every stage of their condition. We feel it is absolutely vital for the families to have this service, and we feel really bad that you do not have this service here in Wales.

Wales is the only part of the UK to offer newborn screening for Duchenne muscular dystrophy, but without a care advisor to support families at this difficult time, many felt the situation was made even harder. Now Welsh families will be able to look forward to the same level of care and support as other areas of the UK, something which should make a huge difference to them.

The Muscular Dystrophy Campaign had an extremely productive meeting with Assembly Government officials recently and plans are underway to identify staff who are able to take up the role of Neuromuscular Care Advisors.

It is anticipated that the recruitment stage will be completed within the next few months and the new advisors will be able to provide patients and their families with much needed support and guidance.

To find out more about the campaign in Wales and the work of the Muscular Dystrophy Campaign go to www.muscular-dystrophy.org.

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