'A Bit Late for Me': The Cost of a Delayed PSP Diagnosis

Graham Wright was a keen runner who regularly ran full and half marathons. When his symptoms began in 2022, he assumed they were a consequence of a brain injury he had sustained after being knocked down by a vehicle while out on a run. It was 2025 before he was diagnosed with progressive supranuclear palsy (PSP).He was not alone in waiting. A 2025 survey by the PSP Association (PSPA) gathered the experiences of 650 people living with, or caring for someone with, PSP or corticobasal syndrome (CBS). It found that 58% of respondents were initially misdiagnosed, and 67% had waited 2 years or longer to be diagnosed. More than one in 10 said they had to wait at least 5 years for an accurate diagnosis. More than a quarter of respondents said they had to visit their GP at least three times before they were referred to neurology.James CusackJames Cusack, chief executive of the PSPA, said the survey findings pointed to "a massive gap in healthcare professional awareness, particularly in primary care".Cusack said delayed diagnosis has an incredibly challenging impact on patients and their loved ones. “Behind every statistic is a family living in uncertainty while a fast-progressing condition steals basic abilities like movement, speech and swallowing. Delays don’t just stall clinical care, they deny families early support, leaving overstretched carers to cope alone. Because symptoms often progress faster than the system can respond, we need a shift from reactive care to proactive, anticipatory support pathways,” he said.Rarely Seen in General Practice The PSPA survey found respondents were most commonly initially misdiagnosed with Parkinson's disease. But the two conditions share similarities in the early stages that can make PSP harder to spot, said Dr Boyd Ghosh, a consultant neurologist at University Hospital Southampton NHS Trust.“PSP is a rare neurological condition that affects around 5 to 7 people per 100,000 and a GP might see only one or two cases in their lifetime,” he told Medscape News UK. “Initially with PSP, patients can look as though they are slower moving as you might expect someone with Parkinson’s to look. But PSP is a life-limiting illness that can progress very quickly. The average disease duration is around six years from onset to death.”Boyd GhoshTell-tale signs of PSP, such as easily losing balance, falling backwards, and movement changes, may not become apparent until around 3 years into the disease, Ghosh said. “That characteristic feature that enables you to say it’s definitely PSP or be 95% certain it is, may not exist for 2 or 3 years. It’s not a condition that is very easy for someone who has never seen PSP before to diagnose as there are no specific tests. But sometimes there are specific symptoms that would point towards it.”To help raise awareness among healthcare professionals, the PSPA has created resources for GPs, including condition guides and guidance on red flag symptoms.From First Symptoms to Diagnosis Because he put his early symptoms down to the injury, Wright didn't mention symptoms such as loss of balance and dizziness when he first went to see his GP.Graham Wright“In essence, I dispensed with talking about any other symptoms with my doctor as I thought what I was experiencing was as a result of my severe head injury,” he said. “So, it wasn’t their reticence to refer me initially that delayed my diagnosis.”He was later referred to a consultant and the Parkinson’s team. By this time, his symptoms were more pronounced and there had been a significant change to how he walked. His wife, Ruth, captured his lopsided walk on video to help with getting a diagnosis. Once the footage was reviewed, a PSP diagnosis was soon confirmed. Receiving the news was a tough moment.“It was very difficult and both Ruth and I were affected by my diagnosis because we then realised that my time was limited,” he explained. “I think we didn’t necessarily relate to that initially, but we’ve now resigned ourselves to the fact that it is a life-limiting condition and we’ve just got to cope with it.”Physiotherapy helped “a great deal” at first but Wright has recently had to give this up as his balance has worsened. He has been actively involved in PSP research programmes but has recently had to stop as his condition has progressed. He constantly experiences dizziness, lethargy, and drowsiness. His speech and memory are also now affected. "I'm really envious of what I used to be and what I am now," he said.Early Neurology Referral Could Cut Delays GPs who suspect a patient may have PSP should consider asking neurology to take a look, Ghosh said. This could prevent initial referrals to elderly care, memory, or falls clinics that delay patients getting an accurate diagnosis via a neurologist.“The progression of PSP is so much faster than Parkinson’s disease,” Ghosh said. “A referral to a neurologist at that point would cut out some of the delay that patients often experience.”A UK Trial Offers Hope A phase 3 clinical trial that is due to start in the UK soon will test a drug that helps the body to reduce the production of tau protein in the brain. PSP is caused by the abnormal clumping of tau in areas of the brain that manage movement, balance and thinking.Ghosh will lead Southampton's involvement in the trial and described it as a promising moment for PSP research. "We're hoping to start fairly soon in the next month or so, but it's very exciting. We're hoping that we will see some positive results."But any new treatment may come too late for some people already living with worsening symptoms.Wright has decided to donate his brain tissue to Newcastle Brain Bank after his death. “I’m fairly resigned to the fact that it’s a bit late for me, but I can still contribute to future research and hopefully help with finding a cure for PSP,” he added.James Cusack and Dr Boyd Ghosh reported no relevant disclosures. Julie Penfold is a freelance journalist specialising in healthcare and medical content. Her work regularly appears in titles such as Medscape, Doctors.net.uk, and Hospital Healthcare Europe.