The scandal of thousands of Scots who could have Parkinson’s without knowing it
Scotland is in the midst of a Parkinson’s diagnosis crisis with long NHS waiting lists and too few specialists
Parkinson’s, a brain condition that gets worse over time, is on the rise as our population grows and ages. It is often misunderstood, and its impacts underestimated.
People see common symptoms, like tremors and slow movement, and think that is all there is. But they are usually not the things that make life hardest.
Parkinson’s has 40 recognised symptoms. Every individual is different. Bladder and bowel, eating, communication, sleep, mental health and thinking are often affected.
People take tablets many times a day – but the effects often wear off. And no current treatment can slow Parkinson’s down, stop it, or reverse the condition. As one person with Parkinson’s put it, “it’s so much more than a ‘movement disorder.’ This affects my whole life.”
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Lowest diagnosis rate in UK
Right now, we estimate that about 14,000 people in Scotland have Parkinson’s. And every single day, around seven more people in Scotland are told they have Parkinson’s, changing their lives and the lives of those close to them.
But many people are living with Parkinson’s unaware and unsupported. Scotland is in a diagnosis crisis. Our new study shows that the number of people diagnosed with Parkinson’s fell during the pandemic and still hasn’t recovered.
Post-Covid diagnosis rates in Scotland were the lowest in the UK. Up to 2,800 people in Scotland could be living with Parkinson’s without a diagnosis.
It’s likely that a combination of factors have caused this, including the slow NHS recovery from the pandemic, low numbers of Parkinson’s specialists, and long waiting lists. More people with Parkinson’s in Scotland died in 2020 relative to the other nations.
A 48-week wait
Our most recent analysis of NHS consultant waiting times showed that hundreds of people across Scotland are waiting more than 48 weeks to see a specialist. That’s a long time to live with uncertainty and doubt about an incurable, progressive condition.
Increasingly, people are turning to private healthcare because they can’t face the wait for a diagnosis. Ordinary families are clubbing together the money to pay for a private assessment from a neurologist.
No one wants a diagnosis of Parkinson’s. But living with uncertainty and fear can often be worse. The longer someone waits for a diagnosis, the longer they’re without medication and adequate support. Their symptoms get worse. The mental and physical impacts are severe.
We’re calling for action from the Scottish Government. We desperately need the NHS to address this diagnosis crisis, tackle the growing care backlog, and improve access to specialist care.
Parkinson’s is a complex condition with unique challenges. Specialist support is essential, from the start. That’s why, this past week, we’ve published ‘Your Move’, our Parkinson’s manifesto for the Scottish Parliament election in 2026.
It sets out how the next Scottish Government can improve health and care, maintain financial support, increase access to physical activity and boost clinical research opportunities. Nine simple measures that can change lives for people with Parkinson’s and those closest to them.
The power will lie with those elected to the Scottish Parliament next May. Your move.
Tanith Muller is policy and campaigns manager for Parkinson’s UK Scotland
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