A charity survey has confirmed diagnosis of rare brain diseases progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) remains challenging.

60% of responders to the survey conducted by UK charity PSPA, confirmed they were initially misdiagnosed with another neurological condition. A statistic which has not changed in the past six years, since the charity held its last survey.

Most commonly, people confirmed they were initially diagnosed with Parkinson’s disease before progressing symptoms led to an updated diagnosis of PSP or CBD. 

Diagnosis of PSP and CBD can be problematic, due to a lack of awareness of the conditions and their early symptoms, even amongst the medical community. 

Currently no single test is available to help diagnose PSP and CBD.

In addition, the survey showed that for one in three people it takes over one year for them to be referred to a neurologist from their GP. Although it does seem things have improved slightly since the last survey was conducted. 

Data from the survey, which was conducted during the summer of 2022, has helped to inform PSPA’s new three-year strategy.

The strategy, which is being launched this week, aims to create a better future for everyone affected by PSP and CBD. To do this the charity has three clear goals across the next three years:

• enabling people living with PSP and CBD and their families to live their best lives possible with high quality support and information

• improving the quality of life of people living with PSP and CBD through research, education and awareness raising

• putting people living with PSP or CBD at the heart of what we do

Rebecca Packwood, PSPA CEO, says “The 2022 survey of people living with PSP and CBD was completed by more than 400 people. The data gained has given us valuable insight into peoples’ diagnosis and care experiences. Insight which we have garnered to formulate a new charity strategy which aims to create a better future for everyone affected by PSP and CBD.

“We know that diagnosis rates of PSP and CBD have not changed in the past six years and that’s just not good enough. A key focus of our new strategy is to improve diagnosis for the 10,000 people living with PSP and CBD, saving time, resources and helping patients get the care they need faster. 

“We will do this by educating and raising awareness of PSP and CBD with healthcare professionals, as well as the general public. Working to ensure people living with the conditions receive support and care that is coordinated, has continuity and is compassionate. We will also ramp up our research efforts, as we know further knowledge about the conditions will help make a difference with diagnosis as well as better support clinical trials into potential treatments.”

You can read the strategy in full at www.pspassociation.org.uk/about-us/creating-a-better-future/

---