‘Unacceptable’ variation in muscular dystrophy services


People with muscular dystrophy are living years longer in some parts of the country than in others because of an “unacceptable” variation in services, according to a report by MPs and peers.

The Walton Report, by the all party parliamentary group for muscular dystrophy, concludes that specialist neuromuscular services in many areas fall “well below a minimum acceptable level”.

And it says the average age of death of people with Duchenne muscular dystrophy in the south-west of England is 19 years, compared with over 30 in the north-east.

The report – which makes a series of recommendations to the NHS, the Department of Health (DH) and the three devolved governments – also says specialist services and support for independent living, and rates of survival, lag behind European countries such as Denmark and the Netherlands.

It concludes: “We strongly believe that second-rate care resulting in shorter lives and limited survival in this country is not acceptable.”

The all party group also said it was “deeply concerned” at the “postcode lottery” and “unacceptable delays” in providing wheelchairs and other equipment.

The report says it is “unacceptable that many individuals are forced into financial hardship or to appeal for charitable funds” to buy vital equipment.

And it says it has doubts about the long-term security of funding for wheelchair services.

The report also says inquiry witnesses highlighted “stark failings in social care” and a lack of independent living support in areas including employment, home adaptations, public transport and higher and further education.

Philip Butcher, chief executive of the Muscular Dystrophy Campaign, said his charity had been urging the government and NHS to make improvements “for a long time” and hoped the report would further pressure the NHS to improve care standards.

A DH spokeswoman said they would consider the report “very carefully”.

She said the 2005 national service framework for long-term neurological conditions (NSFLNC), which includes muscular dystrophy, will be implemented over 10 years and stresses the need for services “delivered around individual needs” that support people to live good quality independent lives. DH support means services will “progressively improve”, she added.

The government also announced £340 million in February for wheelchair services, community equipment, palliative care and short breaks for disabled children and young people.

And it is developing a new system for providing community equipment and wheelchair services which will “put users and carers at its heart”.

24 August 2009

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