The State of PSP & CBD
Despite their severity, PSP & CBD remain poorly understood, with too many people affected by them left trying to navigate health and care services that do not consistently recognise, anticipate or respond to their needs.
PSPA surveyed 650 people either living with PSP or CBD, or who are carers of people with the conditions, in late 2025.
The findings present a stark picture of life with PSP & CBD, long and uncertain routes to diagnosis, severe day-to-day impact, significant emotional and financial burden, escalating need over time, and carers under intense and sustained pressure.
Key Findings from the PSPA Survey
Personal Stories
Need for Change
The experiences shared through the PSPA Survey make a compelling case for change.
They show not only where people are being let down, but where action could make the greatest difference, i.e., improving awareness and recognition of PSP & CBD, strengthening diagnostic pathways, and embedding practical, emotional and financial support more effectively, improving care coordination, and recognising the realities of progression and caring.
These changes could make a substantial difference to the dignity and quality of life of people affected by PSP & CBD.
Contact Us
Want to share your experience with PSP or CBD?
Get in touch with our Communications team at 07918 789678 or email us at communications@pspassociation.org.uk.
