People with muscular dystrophy in Scotland lack treatment, support

From The Edinburgh Evening News in Scotland:

Scots with muscular dystrophy are failing to get the same treatment and support as their counterparts in England and Europe, a leading city consultant has warned.

Dr Ian Grant has backed the findings of a critical report on the care offered to patients with the muscle wasting disease and their families.

The report, published by the Muscular Dystrophy Campaign Scotland Sept. 24, calls for services for sufferers and families to be brought into line with those in the EU.There are not enough key workers in the country to deal with the disease, many families are not given grants they need to survive and wheelchair tests – essential for anyone with the disease – take too long and are not comprehensive enough, the survey found.

Thanks to medical advances, more sufferers are surviving into adulthood but there are not the facilities to cater for them.

The muscle wasting disease usually manifests itself around the age of five or six and leads to physical and sometimes mental decline throughout the patients' teenage years. It affects around one in 35,000 males. It is rare for anyone with it to live until their 30s, but for those who progress beyond their teens respiratory care becomes essential.

Dr Grant, who works with the home ventilation service at the Western General, told the report: "Home ventilation services have been developed on a sporadic basis rather than in a systematic manner. Hence in some areas of the country accessing home ventilation services is virtually impossible.

"If we wish to improve the life expectancy and quality of life of these patients we urgently need a review of home ventilation services."

The charity gathered with sufferers, their families and healthcare professionals at Holyrood Sept. 24 to present a petition and the report to the Scottish Government. They are calling for a review of services within both the NHS and local authorities.

Sarah Fidelo, 40, a make-up artist who lives in Wardie, has two young boys with Duchenne's muscular dystrophy. She said she had experienced numerous problems accessing services.

Her sons Milo, ten, and Daniel, six, both have the disease and face a lifetime of complications.

She said: "Things just take so long and you have to really fight every step of the way for everything.If they had grown up in Europe there's no doubt they would have a better quality of life."