Work continues apace on development of clinical guidelines

The absence of widely adopted, UK clinical guidelines for PANS and PANDAS has long been a barrier for people with the conditions, hindering access to prompt, accurate assessment, diagnosis and treatment and creating a postcode lottery for patients.

The latest meeting of the Guideline Development Group was a reminder of how incredibly proud we are to be part of the process of removing this barrier, working closely with experts and patient representatives and with the support of NHS England and the Department of Health and Social Care. With unfaltering guidance and support from the Royal College of Paediatrics and Child Health (RCPCH) Guidelines team, we anticipate publication in 2026.

We thank all those involved who are giving so generously of their time and knowledge to improve experiences and outcomes for the PANS and PANDAS community. We look forward to sharing further information as it becomes available.

– Katy Hindson, Health Lead, PANS PANDAS UK

The process to develop guidelines which will be endorsed by RCPCH is rigorous and requires time and dedication by all involved. It is an effort which will be well worth it to ensure that the publication of guidelines marks the end of the current lack of clarity which is challenging for clinicians and hugely distressing for patients and their families