PANS PANDAS Steering Group Update (August 2024)
Please note that, as of October 2023, the PANS PANDAS Working Group (PPWG) will be known as the PANS PANDAS Steering Group (PPSG).
Introduction
More than a year after the publication of the 2023 PANS PANDAS Working Group Statement, it has become apparent to the PANS PANDAS Steering Group (PPSG) that the recommendations within this statement have not had as significant an impact on the variation in care for patients presenting with acute-onset neuropsychiatric symptoms as intended.
As a result of this, the PPSG has now issued an update, informing clinicians of the establishment of the PANS Guideline Development Group and signposting them to the recommendations made in the earlier statement. It provides an important reminder that all the stakeholder organisations within the PPSG recommend that clinicians should be aware that the absence of a multidisciplinary team service should not lead to referrals of these patients being rejected, nor that clinicians should be prevented from exercising their own proficiency and judgement.
The statement, again, signposts clinicians to existing international peer-reviewed treatment guidelines and advises that regional and tertiary services may be contacted for discussion.
Update
The inaugural meeting of the PANS PANDAS Clinical Guidelines Development Group took place on Friday 19th April 2024.
The PANS PANDAS Steering Group (PPSG) welcomes the commencement of this work to develop UK guidelines. Forming part of the PPSG’s commitment to work collaboratively to develop standards of care for patients presenting with acute-onset neuropsychiatric symptoms, the Guidelines Development Group will work closely with the Royal College of Paediatrics and Child Health and welcomes stakeholders from all relevant areas of health and lay members from the PANS PANDAS patient community.
Whilst work to develop these guidelines proceeds, the PPSG refers all clinicians to our earlier statement (dated 24 February 2023). In this statement the PPSG recommended that in the absence of current UK national treatment guidelines, that clinicians are aware of existing international peer-reviewed guidelines. Any current local absence of a MDT should not prevent clinicians from exercising their proficiency and judgment, acquired through clinical experience and clinical practice, in treating children presenting with the PANS or PANDAS symptom complex.
Early identification and intervention are known to lead to improved outcomes for this cohort of patients. We urge clinicians to consider the symptom complex associated with PANS or PANDAS when patients present with acute onset neuropsychiatric symptoms, and advise that respective regional and tertiary services may be contacted for discussion
Publication Date: 6 August 2024
