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I have been reading the latest PSPA (PSP Association) report and highly recommend it:
https://www.pspassociation.org.uk/pspa-survey-report-2025/
One of its most important findings is something I have written about before, but which the PSPA addresses with far greater authority and scale: misdiagnosis.
According to the report, 58% of people living with PSP or CBD were initially diagnosed with another condition. Even after that, 40% waited more than three years before receiving an accurate diagnosis.
I was one of them. I waited five years.
The consequences of this are far greater than simply having the wrong label attached to your condition. Every patient who remains undiagnosed or misdiagnosed is effectively invisible to researchers, clinical trials and pharmaceutical companies. PSP and CBD are already rare conditions, which means there are relatively few patients available for studies in the first place. When large numbers of those patients are not correctly identified, the pool becomes even smaller.
That makes it harder to recruit meaningful clinical trials and reduces the incentive for pharmaceutical companies to invest in developing treatments. In a disease area where research is already limited, delayed diagnosis slows progress for everyone.
As patients, we often focus on the personal impact of not knowing what is wrong. I understand that completely. In my own case, there was a selfish advantage to the delay. For several years I believed I had Parkinson’s disease rather than PSP, and that spared me some difficult worries. It gave me less time to worry about PSP.
But that limited benefit is vastly outweighed by the wider cost.
Every year spent searching for the correct diagnosis is a year lost for patients seeking answers, for families trying to plan, and for researchers working to understand these devastating diseases. It also means that many people who could contribute to research are never counted, never recruited and never given the opportunity to participate in studies that may help future generations.
If we want better treatments in the future, we need earlier and more accurate diagnosis today.
The PSPA report shines an important light on this challenge. It is well worth reading, and I hope it helps drive the changes needed so that future patients do not have to spend years waiting for the answers they deserve.
Thank you to the PSPA for highlighting an issue that affects so many of us.
