Our new report reveals over 7,000 “missing” patients with muscle wasting and weakening conditions in Scotland
21 November 2024
Under-reported data from health boards likely contributing to poor specialist service provision in Scotland
A new report has found an estimated 7,300 people with muscle wasting and weakening conditions are “missing” from official NHS Scotland records, leading those living with the conditions to call for an urgent review of how data is collected and used to support them.
The report, that we have published today (Thursday 21 November 2024), collected and analysed Freedom of Information data from all 14 NHS Scotland health boards. It found there is no consistent or accurate data collection around how many children and adults are living with muscular dystrophy conditions.
Some health boards record no data at all, while others refer patients to neighbouring boards, resulting in them having to travel great distances for access to already under-resourced specialist care.
Based on the prevalence of muscle wasting and weakening conditions, it is estimated that 1 in 600 people in the UK are affected. Against Scotland’s population, this means around 9,000 people are thought to be living with the conditions. However, only 1,750 children and adults are currently accounted for by the 14 health boards.
The findings reflect what the community has been telling us about their experiences and we believe the under-reporting has also led to a poor provision of specialist support.
“Far too often, we hear heartbreaking stories from people living with muscle wasting and weakening conditions, and those that care for them, in Scotland. They tell us they can’t access the kinds of care they need.
“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?”
Rob Burley
Director of Care, Campaigns and Support at Muscular Dystrophy UK
Our Stories
Stephen, who lives with Facioscapulohumeral muscular dystrophy.
Stephen is one of the “missing” as his health board of Dumfries and Galloway doesn’t hold any reportable data on him or others with conditions in the area. He says:
“My nearest specialist is around 90 miles away. 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.”
Stephen
Living with FSHD in Dumfries, Scotland
Vanessa and her daughter Phoebe. Phoebe lives with Facioscapulohumeral muscular dystrophy in Shetland.
Vanessa cares for her daughter Phoebe, who has Facioscapulohumeral muscular dystrophy. They live in Shetland and have to travel to Aberdeen for specialist care. Vanessa says:
“It’s frustrating when so many of Phoebe’s tests could so easily be done on the island. We recently had a breathing assessment done at Aberdeen hospital. The test only took ten minutes, but it was still a two-day journey.
“One of the improvements I’d like to see is more education being available for non-specialist healthcare professionals like GPs.”
Vanessa
Mum to Phoebe who lives with FSHD in Dumfries, Scotland
In our report we are calling on the Scottish Government to mandate and standardise the collation of data on both the number of people with muscle wasting and weakening conditions as well as the specialist care resources that are available.
We are also calling for a long-term plan to ensure the succession and sustainability of adequate specialist care in Scotland. We want to work collaboratively with NHS Scotland and all 14 health boards to help educate the workforce about muscle wasting and weakening conditions and care.
Missing people. Missing support.
Scotland is letting down people with muscle wasting and weakening conditions. Help us create change.
