Support workers for Scottish muscle disease patients

  • Published
Eileen McCallum and campaigner
Image caption,
Campaigners had called for improvements to patient services

Patients with muscle-wasting conditions are to receive dedicated support after a "tireless" campaign to improve care.

Three NHS-funded advisers are in the pipeline to provide emotional and practical help to families across Scotland.

Last year a report by a cross-party group of MSPs recommended urgent improvements to services.

The Muscular Dystrophy Campaign said the advisers had an "incredible impact" on the well-being of patients.

An estimated 6,000 households in Scotland are living with muscular dystrophy and related diseases.

But just two-part time support workers were previously available to help with issues such as co-ordinating physiotherapy and hospital visits, as well as providing emotional support.

Robert Warner, chairman of the Muscular Dystrophy Campaign, said keeping patients in better health benefited the NHS.

'Reduces admissions'

He said: "Through tireless campaigning, people from all over Scotland affected by muscle-wasting conditions have been able to convince NHS leaders of the incredible impact that care advisors can have on the health and well-being of both patients and their families.

"The right care reduces stressful and costly emergency admissions to hospital and keeps people off busy wards."

The campaign has been backed by River City actress Eileen McCallum, whose two grandsons have muscular dystrophy.

She said the provision of care advisers would "change the lives of hundreds of patients with devastating muscle-wasting diseases and their loved ones".

Eilean Stewart, 21, from Glasgow, who has the debilitating Limb-Girdle muscular dystrophy, gave evidence for the report on the treatment of patients.

She said one difficulty was that GPs often know little about rare muscle-wasting diseases.

"Being diagnosed with muscular dystrophy is devastating for patients and those close to them," she said.

"Our conditions vary, but most leave people with severe physical disabilities and some substantially shorten people's lives.

"People desperately need someone there who understands what they are going through and who can help them pick up the pieces, both emotionally and practically."

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