A charity survey has highlighted 60% of people living with rare brain diseases called Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are initially misdiagnosed.

The survey of people living with PSP & CBD was conducted by UK charity PSPA in 2022 and showed more than half of responders had initially been diagnosed with other conditions. Most commonly people were misdiagnosed with Parkinson’s disease. Stroke and depression were also common.

PSP & CBD are neuro-degenerative diseases caused by the loss of nerve cells in the brain. Over time this causes problems with balance, speech, vision, cognition and mobility.

Lack of awareness, even amongst the medical community, has meant diagnosis hasn’t improved for the 10,000 people living with the conditions over the last six years, and it can take up to three years for a correct diagnosis to be issued.

In response to the survey findings, PSPA has published a State of Diagnosis report. This report details key findings around peoples’ experience of diagnosis and accessing appropriate care.

PSPA Chief Executive, Rebecca Packwood said: “It has been disappointing to learn that diagnosis of PSP & CBD remains as challenging today as it was in 2016. In some cases, it can take up to three years to obtain that all important diagnosis. This means people are around half way through their illness (which has a life expectancy of seven years) before they receive a diagnosis, and can access the care they need.

As a charity, we know this is not good enough and we want this to change.

As part of our commitment to improving diagnosis, we have published a State of Diagnosis report with a view of highlighting the key challenges families affected by PSP & CBD face.

We hope the report, as well as our new #BeAware campaign, will help to drive positive change; helping people to gain a diagnosis earlier, as well as ensuring they have access to support and care that is consistent, coordinated and compassionate.”

PSPA’s #BeAware campaign aims to raise awareness of key PSP & CBD symptoms.

Specifically, the campaign targets healthcare professionals such as opticians, so they can look out for early eye changes people living with PSP often experience.

Download the PSP & CBD State of Diagnosis Report here:

Learn more about the #BeAware campaign which includes the Eye Reg Flag posters for opticians, here: https://www.pspassociation.org.uk/information-and-support/awareness-tools/

---