Thousands with muscle wasting conditions ‘missing’ from records, says charity

Around 7,300 people with muscle wasting and weakening conditions are “missing” from official NHS Scotland records, according to a charity.

Muscular Dystrophy UK said there is no consistency in recording data on how many children and adults are living with the conditions.

Responses to freedom of information requests to Scotland’s 14 territorial health boards found some are not collecting data at all, while others are referring patients to neighbouring boards.

The charity said only 1,750 children and adults are currently accounted for by health boards, though based on Scotland’s population some 9,000 people are thought to have muscle wasting and weakening conditions.

Supporters of the charity, including Paralympic champion Stephen McGuire, gathered outside the Scottish Parliament on Thursday to launch the report.

Rob Burley, director of care at Muscular Dystrophy UK, said: “We set out to understand and map the specialist service provision that is available against the number of people with muscle wasting and weakening conditions NHS Scotland is supporting.

“However, we quickly realised the numbers reported by health boards can’t possibly reflect reality.

“It is no wonder the community is telling us they don’t have the support they need.

“How can we or NHS Scotland possibly assess whether there is sufficient practitioner resource when it is only planning for around 20% of the estimates for the population of people affected?”

Stephen Thomas is one of those who considers himself to be among the “missing” as his health board of Dumfries and Galloway does not hold any reportable data on him.

He said: “The most worrying part about being so isolated and alone in managing my condition is how much I am deteriorating.

“It would be hard to deal with even if I had the support of medical professionals around me, but feeling like you are navigating the changes all on your own is scary.”