South West MP leads the fight against muscle disease

As part of a local campaign to improve services for patients with rare illnesses, Jeremy Browne MP gave the key note address at the South West Neuromuscular Conference hosted by the Muscular Dystrophy Campaign in Taunton on Friday 25 April.

The conference, which brought together families affected by the conditions and healthcare professionals, provided an update on the important work taking place in the South West to improve services for people with neuromuscular conditions. Delegates also had the chance to find out about the latest information on research developments and the Human Fertilisation and Embryology Bill.

The South West conference followed the publication of the clinician-led report Building on the Foundations last December by the Muscular Dystrophy Campaign. The report highlighted the South West region as one of the most poorly served areas in the UK for neuromuscular services, particularly for young people and adults. Evidence showed that patients in the South West face a fragmented, sub-standard system of care, with significant variations in survival ages.

In response to Building on the Foundations the South West Specialised Commissioning Group set up the Neuromuscular Short Life Working Group to undertake a review of services for patients with neuromuscular conditions in the South West. The working group, which includes the Muscular Dystrophy Campaign, families, clinicians and healthcare professionals, will be publishing their recommendations in June 2008.

After the conference, Jeremy Browne MP, commented:

“There is some worrying research which shows that families affected by muscular dystrophy in the South West are not always getting the same access to care as elsewhere in the country. The people who attended the conference certainly felt that additional services could be made available to assist them with managing the condition.

"I want to ensure that people living in Somerset benefit from the highest standards of healthcare. I am also very supportive of pioneering medical research which offers the possibility of improved treatment and eventually even a cure for terrible genetic illnesses.

"The Muscular Dystrophy Campaign is an excellent organisation which relies entirely on donations from individuals, charitable trusts, statutory funding bodies and corporate partners. It is free to join and provides valuable support for people living with muscular dystrophy and their families."

Attending the conference in Taunton and speaking about the services in her area, local constituent Julie Haydon, whose daughter has a rare type of muscular dystrophy, said:

“I am really pleased to be attending the conference. My daughter has recently moved into adult services and we initially found it difficult to receive on-going appropriate support. Nothing has ever been straight forward and it will be really good to hear about what is being done to improve local services. Provisions should be made to help us all receive necessary treatment not make life more difficult, information needs to be provided in a clear format.”

Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, said:

“I am delighted that Jeremy Browne MP is showing his support for patients with neuromuscular conditions. People with rare illnesses are living longer thanks to medical advances, and it is essential that local NHS services meet this demand.

“This conference provides an important forum for us to hear from families about their experiences in accessing services in the South West. Important work is taking place to improve services and we must work together to ensure that real changes are put in place.”