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Eastbourne MP Nigel Waterson backed a local campaigning mum today in her fight for better muscle disease services.

Nigel Waterson attended the All Party Parliamentary Group for Muscular Dystrophy’s (APPG) meeting with one of the South East Coast NHS decision makers to find out why the region is not providing a better service for families with muscle disease.

Dr Brijender Rana, Public Health Lead for the South East Coast Specialised Commissioning Group, was asked to come to the Houses of Parliament and explain why his region, along with three others in the UK, has not made vital improvements to their health services for muscle disease patients.

The improvements were recommended in the Walton Report, an investigation into healthcare for muscle disease published last summer.

Nigel Waterson was there to ask tough questions of the South East Coast Specialised Commissioning Group, and to support his constituent Phillippa Farrant whose son Daniel has Duchenne muscular dystrophy.

Key issues still affecting South East Coast muscle disease patients:

  • There is still no regional care advisor for the South East Coast.
  • There is no specialist muscle disease support in the South East, so patients have to travel to London for all appointments.

Phillippa Farrant urged the South East Coast Specialised Commissioning Group to act quickly:

“Families like ours are living with an urgent timescale. Our boys are still dying, so please can you prioritise these issues and get this done.

“There is not enough time for families living with this condition to wait for decisions to be made and care to be improved.”

Nigel Waterson MP said:

“It’s vital that vulnerable local families like Phillippa’s are able to access the care they need.

“It’s high time that NHS bosses improved muscular dystrophy services in our area.”

Nigel Waterson challenged Dr Brijender Rana on the lack of support for South East Coast muscle disease patients and backed Phillippa’s call for quick action on improvements to their healthcare.

Robert Meadowcroft, Director of Policy at the Muscular Dystrophy Campaign, commented:

“We are pleased that Nigel Waterson MP has thrown his weight behind the campaign to improve essential services for people living with muscle disease. 

“He is strong voice in Parliament for local patients and their families.”

To find out more about the Walton Report go to www.muscular-dystrophy.org.

The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease. It has pioneered the search for treatments and cures for 50 years, and is dedicated to improving the lives of all people affected by muscle disease. 

It funds world-class research to find effective treatments and cures; provides free practical and emotional support; campaigns to raise awareness and bring about change and awards grants towards the cost of specialist equipment.

26 February 2010