Carol Amirghiasvand is the Helpline and Information Services Manager for the PSP Association (PSPA). She has worked in the voluntary sector for nearly 20 years providing information and support to people with neurological conditions. Her current role is managing the Information and Support services provided by PSPA to ensure knowledge and understanding of PSP and CBD is increased and that people affected by these conditions have access to a more acceptable quality of care and support. Follow the PSP Association @PSPASSOCIATION
Progressive Supranuclear Palsy (PSP) is a commonly misdiagnosed neurological condition with an average age of onset of 63. Almost 40% of respondents to a recent survey by the PSP Association saw a geriatrician before being referred to a neurologist, meaning that geriatricians can play a vital role in identifying the disease and ensuring rapid access to the most appropriate care.
PSP is a devastating, progressive neurodegenerative condition defined by the accumulation of misfolded tau protein, which forms neurofibrillary tangles in areas of the brain involved in movement, balance, speech and cognition. Prominent early symptoms can include falls, eye problems and cognitive dysfunction, leaving many GPs unsure of where to direct referrals.
Even after referral to a specialist, the correct diagnosis can be delayed by up to three years. Our recent member survey of around 460 people with PSP found that nearly half received an incorrect diagnosis first, with 30% initially diagnosed with Parkinson’s. This prompted a 2017 awareness campaign entitled “It’s Not Parkinson’s” directed at primarily at geriatricians and neurologists.
The human cost of misdiagnosis is huge; it leaves people struggling to gain access to appropriate care and support. People tell us of the horror they have faced – to start coming to terms with a Parkinson’s diagnosis, only then to discover they have a far more life limiting condition instead, with life expectancy often around seven years. One patient told us: “I had never heard of PSP. For one brief moment I allowed myself to hope that I had a condition that’s not as bad as Parkinson’s, one that is curable. I soon came to learn that the diagnosis was worse and there was no hope of a cure.”
The progressive nature of PSP means a fast diagnosis is vital to help patients make the most of the time they have left, and it enables the healthcare team to get started with the many ways to try and reduce symptoms while avoiding unnecessary medication. You may have been told in medical school that PSP is atypical Parkinson’s, and you or your colleagues in neurology may have come to think of it as “difficult Parkinson’s” that won’t respond to treatment. But PSP is an entirely separate and distinct condition, and there is so much that can be done for patients and their families.
Working alongside consultant neurologist Prof James Rowe from Addenbrooke’s Hospital, we have developed a two minute animation, fronted by our Vice President Prof Sir Colin Blakemore, to highlight distinctive symptoms of PSP, encourage early diagnosis and explain how specialists can provide the best possible care for their patients. Please take a look – the animation can be viewed at www.pspassociation.org.uk/itsnotparkinsons , where you will also find powerful patient accounts of misdiagnosis and a link to our publications for professionals.
With clinical trials of tau antibodies for PSP coming online in the UK in the coming months, the case for early and accurate diagnosis is more compelling than ever.
The PSP Association (PSPA) is the only national charity offering support and information to people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD). Our 2017 Study Day for healthcare professionals will take place in Milton Keynes on 18th October; to register for a free place, please visit https://www.pspassociation.org.uk/for-professionals/study-days/