Putting patient experience at the heart of policy change
Earlier this month, as part of our ongoing efforts to improve care and support for the UK PANS and PANDAS community, we submitted a report to NHS England, the PANS PANDAS All-Party Parliamentary Group (APPG) and the PANS PANDAS Steering Group.
The report focusses on current experiences of healthcare for children, young people and adults with PANS and PANDAS; painting a stark picture of the current reality for families.
Key themes
Our report draws out the key themes reported by patients and families, highlighting in particular:
-
- Limited awareness in Primary Care
Many GPs still lack understanding of PANS and PANDAS, leading to reluctance in initiating diagnostic tests or treatments.
- Lack of NHS pathway
Families are often passed from one service to another without coordinated care or a lead clinician.
- Limited awareness in Primary Care
-
- Postcode lottery
Access to diagnosis and treatment varies dramatically across the UK.
- Postcode lottery
-
- Financial and emotional burden
Families unable to access NHS care face devastating costs and stress.
- Financial and emotional burden
-
- Avoidable harm
This report highlights what isn’t currently working and the resulting devastating consequences for families, while making a compelling case for why policymakers’ support is essential to drive meaningful change.
– Katy, our Health and Policy Lead
Why now?
Despite growing awareness, families continue to experience disbelief, dismissal, and systemic barriers. This is not a new problem; it reflects longstanding gaps that families have faced for years. However, as publication of clinical guidelines draws closer, it is imperative that we lay the groundwork for prompt, widespread implementation of the guidelines across the country. This report highlights what isn’t currently working and the resulting devastating consequences for families, while making a compelling case for why policymakers’ support is essential to drive meaningful change.
Our commitment
We will continue to advocate for everyone affected by PANS and PANDAS, working with the people in Government, in the NHS and beyond, to make it clear that people with PANS and PANDAS and their families deserve better.
As part of this work, we look forward to launching a Community Survey in January 2026 which will allow us to capture a more detailed picture of the experiences of families living with PANS PANDAS across all four nations of the UK.
Thank you to the parents who kindly gave permission for their words to be used in this report.
NB: Please be aware that the themes in this report may be difficult or triggering for people affected by PANS or PANDAS and refers to self-harm and suicide.
