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 conditions which need ongoing specialist clinical care; some are cruelly life-limiting. People with these conditions should not be “missing” from NHS Scotland’s records and planning.
There are committed clinicians here in Scotland who do their best to support our community, but how can they possibly do this effectively when they aren’t resourced to support our whole community?
Even for those acknowledged in that official data, accessing care can be a struggle. Far too many are forced to travel long distances - sometimes hundreds of miles - to see a specialist.
Others from our community have battled and feel abandoned through the transition from paediatric to adult services. Turning 16 is supposed to be fun. It shouldn’t involve worrying over healthcare access.
As a community, we cannot accept a system that leaves so many of us unaccounted for, unplanned for, and struggling to access the healthcare we need. NHS Scotland and the Scottish Government must ensure that the missing are found and supported. To make this a reality, we need to start with the basics; accurate records, better coordination between paediatric and adult services, and local care options that prevent us from enduring long exhausting journeys just to access basic support.
I say this to Scottish Government and all health boards in Scotland, don’t just read the report; listen to us, speak with us, and work with us to implement the solutions.
We simply want to be cared for. We want to be seen. And we want to know that the system is there for us, with people who truly understand our needs and are committed to making our quality of life better.
Gerry McMenemy is a trustee of Muscular Dystrophy UK
Agenda is a column for outside contributors. Contact: agenda@theherald.co.uk
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