MP applauds major breakthrough for South West healthcare service

Adrian Sanders MP has signed a Parliamentary Motion congratulating NHS South West Specialised Commissioning Group on its announcement of a new £1 million investment into neuromuscular services for children and adults living across the South West of England.

This fantastic success is the result of a sustained campaign led by the Muscular Dystrophy Campaign and supported by local families, healthcare professionals and parliamentarians, like Adrian Sanders living and working in the South West, over the past year.

The South West campaign started in December 2007 when the Muscular Dystrophy Campaign published a hard hitting report,'Building on the Foundations', which uncovered major shortfalls in the provision of specialist care in the South West of England. The report revealed survival for patients with Duchenne muscular dystrophy was an average of 18-years-old in the South West compared with 30 years in the North East of England.

The investment, agreed to by Primary Care Trusts (PCTs) in the South West, comes after proposals by the SW Specialised Commissioning Group for a Managed Clinical Network across the region.

The Managed Clinical Network will be a £1 million investment, divided between all PCTs in the region with the contribution weighted on population. It includes the recruitment of the following posts:

• 2 full-time adult consultants specialising in muscle disease

• 1 full-time paediatric consultant specialising in muscle disease

• 3.5 specialist physiotherapists

• 3 full-time care advisors (for children and adults)

• 1 psychologist

• respiratory and cardiac support

The service will be phased in over a period of two years, beginning in April 2009. The Muscular Dystrophy Campaign, families and health professionals will all be involved in the implementation process. The cost for each PCT to implement the network will amount to less than £9 per person each month.

Approximately 1 in 1,000 people in Adrian Sanders MP's constituency of Torbay are affected by muscular dystrophy or a related neuromuscular condition.

Commenting on the sucessful outcome, Sharon Kitcher, campaigner and mother of a boy with Duchenne muscular dystrophy, said:

"The success in the South West illustrates the power of campaigning, and the value of families and the Muscular Dystrophy Campaign working together. Too often families are missing out on specialist care and support, and many people like me are being forced to travel to centres in Oswestry and Oxford just to receive the specialist care we need. We need our services to be delivered closer to home by experts who really understand our conditions. This is something the NHS should provide, so I am thrilled with the decision!"

Signing the Parliamentary Motion, Adrian, said: "I am delighted for my constituents living with muscle disease and I congratulate the families and the Muscular Dystrophy Campaign for leading this successful campaign."

"Disabled patients all over the country have a right to expect fair and equal access to vital services and I am pleased that the OCTs in the South West. We are delighted that the partnership between the NHS, families and health professionals has produced such an important result.

Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, commented on the announcement: "This is a momentous decision for patients and families living in the South West. We are delighted that the partnership between the NHS, families and health professionals has produced such an important result."

"We are committed to working with our families and at all levels of the NHS and Government to ensure that patients receive appropriate and timely care and support. PCTs in the South West have set an example to Health Authorities across the country - we are now calling on all other regions in England to follow their lead and carry out reviews of specialist care."

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 it 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 equiptment.

Comments

[PAULINE ENOS]

I have just read your report on help for patients with muscular dystrophy to which patients with the disease haveno help with ways to improve on their living standards.

My husband has Beckers muscular dystrophy and only sees a consultant ONCE a year (to which the consultants dont even specialise in that field only neurology) and is asked how are things and do you feel you are getting any worse, he then has a blood test and heart check lung functions and then told we'll see you next year.

He has no physiotherapy, no hydrotherapy but in ENGLAND they get everything that is available to sufferers. Please can you make sure things do go to plan and there are specialists to make their lives so much more easier.