Our Chief Executive Andrew Fletcher recently visited Scotland to meet with the Scottish Government, parliamentarians and other supporters to build on the launch of our ‘Missing People. Missing support.’ report at the end of last year.
In November 2024, we published our Missing People. Missing Support. report,highlighting the magnitude of unmet health and care need in Scotland for people living with muscle wasting conditions. We found that an estimated 7,300 people with muscle wasting and weakening conditions are ‘missing’ from official NHS Scotland records. Our report revealed how there is no consistent or accurate data collection around how many people live with muscle wasting conditions in Scotland. This has a significant impact on how specialist services are planned and delivered.
The findings of our report reflect what we hear from our community, that there is a postcode lottery in accessing timely multi-disciplinary healthcare which they rely on to live well with their condition.
Staff, Trustees and Scottish Council members launched our report outside the Scottish Parliament accompanied by local families and supporters. Members of the Scottish Parliament (MSPs), including Jackie Baillie (MSP for Dumbarton) and Monica Lennon (MSP for Central Scotland), also joined us on the day to help highlight the urgent need to improve care and support for the muscle wasting community in Scotland.
The report launch drew attention from media, Scottish Government and Health Boards. Minister for Public Health and Women’s Health, Jenni Minto MSP, stopped by to hold valuable discussions with us and expressed interest in meeting with our community again. The Scottish Government formally responded, acknowledging our report and confirming that they will consider what can be done “to ensure that people can access the full care and support they need to live well.”
Since then, we’ve been hard at work behind the scenes.
We’re writing letters to ministers, meeting with MSPs, following up with individual Health Boards and considering other ways we can raise the profile of our community in the Scottish Parliament. Publishing a report is not the end of the road.
This follow-up engagement using the findings of the report is vital, so we can build on the momentum of the launch event, strengthen our local relationships and better understand how to drive the report’s recommendations forward.
Our Chief Executive, Andrew Fletcher, recently went to Scotland and over the course of three days met with Scottish Government policy officials, MSPs, third sector partners and members of our community. They discussed the issues highlighted in the report and we also managed to touch on a wide-range of other pressing issues, such as housing adaptations, care packages, accessible student accommodation and access to new treatments.
Andrew’s visit comes ahead of exciting times for our work in Scotland. The Scottish Government is actively preparing its upcoming Long Term Conditions strategy, the scope of which is expected to include neurological conditions. Government, NHS and other leading bodies, often talk about muscle wasting and weakening conditions under the category of neurology. This is why the Long Term Conditions strategy is so important for the muscle wasting community in Scotland.
The next elections to the Scottish Parliament will take place in May 2026. Although these are over a year away, Andrew’s meetings with MSPs already highlighted the need to be involved in preparatory discussions. These will be among the next big opportunities for us to draw attention to the issues facing people living with muscle wasting and weakening conditions. This all comes as we’re in the process of developing our new organisational strategy.
Find out more about our findings and how you can get involved.
Learn more about how we work to improve the quality of life for people affected by muscle wasting and weakening conditions, to ensure access to the best possible holistic support.
