If it was announced today that more than 7,000 people in Scotland were missing, their lives and experiences unaccounted for, there would surely be outrage. The answers to the questions of "how" and "why" would be demanded. But that’s exactly what is happening up and down the nation.
A crisis is unfolding, leaving people unaccounted for and impacting their right to healthcare. Today, a new report from Muscular Dystrophy UK, Missing people, Missing support, uncovers a deeply troubling truth: NHS Scotland is failing to account for approximately 7,000 people living with muscle wasting and weakening conditions. We began conducting this research because members of our community - people living with muscle wasting and weakening conditions and those who care for them - have been telling us they aren’t getting access to the specialist support they need and are often having to fight for essential medical care.
A basic understanding of supply and demand makes it obvious how NHS Scotland has been under-planning for and under-supporting our needs. It’s no wonder we are struggling to access support when, across all health boards, only around 20% of our community is being accounted for. This is simply not good enough.
These conditions do what they say on the tin, they cause muscles to progressively weaken and waste over time. Adults and children. This means tasks which most people find simple become a massive challenge and a drain on energy and wellbeing.
These are serious and complex.