Muscle disease sufferers 'let down by NHS'

Published on Monday 24 August 2009 22:16

THE National Health Service is failing people with muscular dystrophy, MPs and peers have warned.

People with the illness live a lot longer in areas where support services are better, according to the All Party Parliamentary Group on Muscular Dystrophy.

The Walton Report said the group received 77 written complaints about services in Scotland.

"We received evidence from the Muscular Dystrophy Campaign that families in Scotland are being denied treatment and face major delays in the provision of essential equipment and services," it stated.

The report found evidence of a postcode lottery – in which people living with muscular dystrophy in some areas were living to an average age of 30, while those elsewhere had an average lifespan of just 19.

There are more than 60 types of muscular dystrophy, with more than 60,000 babies, children and adults in the UK affected.

The report says most sufferers do not have a named care worker – with only 13 posts across the UK, instead of the 60 needed.

The report recommended that each of the ten health regions in the UK should appoint a specialist to oversee services.