Scotland is letting down people with muscle wasting and weakening conditions. Help us create change.
Over 7000 missing from NHS Care
People with muscular dystrophy in Scotland report a lack of specialist support. Our research shows NHS Scotland is only accounting for about 20% of patients – it is missing more than 7,000 people with conditions.
Our report, Missing people. Missing support. outlines how underreporting is contributing to an insufficient level of support, as well as other issues experienced by the community of patients and those that care for them.
We’ve outlined recommendations for the Scottish Government, NHS Scotland and its health boards.
Help us create change
You can help create change by urging your MSPs to support our recommendations.
Everyone in Scotland has eight Members of the Scottish Parliament (MSPs) – one constituency MSP and seven regional MSPs.
Use the template letter below and contact all eight. You can personalise it with your own experience or use the provided version.
Find your MSPs contact details on the Scottish Parliament website by entering your postcode.
This simple action could make a huge difference. The more of us who come together the greater the impact we’ll make. Together we are stronger.
Our stories
Stories from people living with muscle wasting and weakening conditions in Scotland and from those who care for them.
Uncovering the gaps
In 2024 we set out to map how many patients each health board is treating and how many trained specialists they employ. This was done through Freedom of Information requests to the health boards and surveying people living in Scotland in our community. We found that:
Missing people
An estimated 7,300 people in Scotland are currently unrecorded and “missing” from the care records of NHS Scotland’s neuromuscular services.
No consistent data collection
There is no consistent data collection across NHS Scotland’s 14 health boards, leading to an inability to assess the adequacy of service provision against local need.
Postcode lottery
The evidence suggests that access to treatment in Scotland is a postcode lottery.
There is considerable unmet need
There appears to be a considerable unmet need in terms of services and support available to people living with muscle wasting and weakening conditions in Scotland.
It is currently impossible to see, or develop, a Scotland wide resource plan.
Services will not improve unless all health boards begin routine collection of standardised, detailed data.