PANS and PANDAS

Imagine a child who is healthy and thriving one day, and the next develops severe anxiety, obsessive behaviours, tics, eating restrictions, or suddenly loses skills they previously had. For families affected by PANS and PANDAS, this is not a hypothetical scenario, it is a life-changing reality.

PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are post-infectious conditions that can trigger sudden and dramatic changes in a child’s brain and behaviour. Yet despite the profound impact these conditions can have, too many families across Scotland face long waits for diagnosis, rejected referrals, and inconsistent access to treatment.

Early recognition can make a life-changing difference. However, without sufficient awareness, symptoms are often mistaken for behavioural difficulties or other conditions, delaying the specialist medical support children urgently need.

This is an issue I have been raising in Parliament since 2022, when a constituent first contacted me after struggling to access support for their child. Since then, I have continued pressing for greater awareness, better training for healthcare professionals, and increased research into these conditions.

Earlier this year, I was proud to host members of the PANS PANDAS UK Youth Board in Parliament. Hearing directly from young people about the challenges they face was both moving and powerful. More recently, I secured a debate in Parliament to urge the Government to invest further in research and improve awareness and professional training.

Importantly, we must ensure a joined-up approach so that support is not determined by a postcode lottery. My Scottish Liberal Democrat colleague Adam Harley MSP recently raised the case of a constituent in the Scottish Parliament. Disappointingly, the First Minister made reference to rare condition protocols in his response, but it’s increasingly clear that PANS/PANDAS isn’t rare but underdiagnosed.

There are encouraging signs of progress too. The UK-wide PANS PANDAS Steering Group is currently developing clinical guidance, due to be published this year, with support from healthcare professional bodies, NICE, royal colleges, charities and families. The Scottish Government has also reaffirmed its commitment to working with NHS boards, clinicians and partners across the UK to improve awareness and ensure care develops in line with the growing evidence base.

By improving awareness, training, research and access to care, we can ensure children and families affected by PANS and PANDAS receive the support they deserve. If your child has been impacted by PANS or PANDAS and you would like some support, please do get in touch with me at wendy.chamberlain.mp@parliament.uk.