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Families affected by muscle-wasting conditions are being denied proper care and face delays in getting essential equipment, a charity has claimed.
The Muscular Dystrophy Campaign (MDC)said the 5,000 people suffering from rare muscle diseases in Scotland faced a “postcode lottery” for services.
It called on the Scottish Government to take action.
Public Health Minister Shona Robison said she was committed to improving muscular dystrophy services.
The charity said a report it is to present to Ms Robison at Holyrood on Wednesday had found there were only two care co-ordinators in Scotland for people with muscular dystrophy and other related muscle conditions.
It added there was no non-means tested grant in Scotland to help fund home adaptations.
Families in Scotland are means tested for a £20,000 capped grant and the MDC said many faced “severe financial hardship”.
The MDC also said two-thirds of Scottish health boards did not offer regular physiotherapy for patients with muscular dystrophy, and said it was concerned about waiting times for wheelchair assessments.
Sarah Fidelo, from Edinburgh, has two sons, age 10 and six, both with Duchenne muscular dystrophy.
She said: “There doesn’t seem to be enough awareness about muscle disease in Scotland nor enough specialist support for families who live with it every day.”
Her eldest son was diagnosed when he was four years old but she took him to see seven different doctors before Duchenne was suggested.
By the time he was eventually diagnosed, Mrs Fidelo had given birth to another son who also had Duchenne.
She said they both receive good care, but said her experience of the diagnosis process was “very poor”.
No cures
MDC Scottish Council chairman Stephen McDonald said: “We are calling on the Scottish Government, health boards and councils to carry out an urgent review of current health and social care services for people with muscular dystrophy and other rare muscle conditions in Scotland.
“Today’s report shows patients and families living in Scotland are being forced to go without vital treatments that help prolong and improve their lives.”
Ms Robison said: “The Scottish Government is committed to improving services for people who live with muscular dystrophy.
“That’s why we’re investing £16m to modernise wheelchair services and why we have consulted on plans to abolish the means test for larger adaptations, replacing it with a simpler, fairer and more generous system.
“I hope to make an announcement shortly on these proposals.”
Muscle diseases like muscular dystrophy can weaken or waste muscles. They can be inherited or acquired, and can affect people of all ages. There are currently no cures.
