Steering towards change
The PANS PANDAS Steering Group has written to every NHS Trust Chief Executive, across all four nations, highlighting that care and treatment for those affected by PANS and PANDAS varies significantly across the UK.
The Steering Group, supported by several key health organisations, emphasises that many children and young people are still not receiving adequate or timely treatment. Whilst recognising that this discrepancy in care may stem from outdated information and confusion regarding acute-onset neuropsychiatric symptoms, the letter aims to update decision-makers regarding the work being undertaken to improve care people with PANS and PANDAS:
Development of guidelines
The letter also acknowledges the lengthy, rigorous process of guideline development.
In addition to reaffirming the key developments that will lead to the expected publication of UK guidelines in 2026, it reminds Chief Executives that international treatment guidelines can be used to advise treatment protocol in the meantime.
Treatment delays and referral rejections
The PANS PANDAS Steering Group and PANS PANDAS UK state that gold-standard treatment requires a multidisciplinary team to review and treat children with these conditions. Whilst acknowledging the time required for these teams to develop, we stress that:
‘[…] the absence of such a service should not lead to referrals of these patients being rejected, nor that clinicians should be prevented from exercising their own proficiency and judgement.’
Standardising care
Finally, the Group urge NHS Chief Executives to distribute information about PANS and PANDAS to all relevant staff, including to all GP practices and paediatric units within each Trust.
“The PANS PANDAS Steering Group took the direct approach of writing to every NHS Chief Executive across all four nations. This will significantly increase awareness of the conditions, taking people affected by PANS and PANDAS one step closer to receiving the treatment and care they deserve.” Vicky Burford, CEO, PANS PANDAS UK
