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Saturday 26th May 2018

NHS muscle disease care is lacking

24th August 2009

An inquiry by the All Party Parliamentary Group on Muscular Dystrophy has found NHS care for the disorder to frequently be "inadequate and not acceptable".


The report showed that people with muscle-wasting diseases had to wait for a long time to receive a wheelchair and often had to finance their own physiotherapy treatments.

There are over 60 forms of the muscle-wasting disease which affect around 60,000 people across the UK.

The inquiry, which had the support of the Muscular Dystrophy Campaign, looked at data from patients, physicians and managers.

The report said a "postcode lottery" was evident in relation to how long a patient could expect to live. In the north east patients had a life expectancy of 30, but in other areas this fell to around 18 years of age.

It also said the health service relied on charities to offer help to families affected by the disease.

Dave Anderson, the MP who chaired the report, had a brother and sister whose deaths were caused by the disease.

He said: "It is very clear that the standard of care provided to these patients by the NHS is often inadequate and not acceptable."

A spokesman for the Department of Health said: "We expect the NHS to commission services to meet the needs of its local communities. However, muscular dystrophies are to be included in an updated list of specialised services to help local NHS organisations plan services."


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