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PANS PANDAS Working Group Update

Please note that, as of October 2023, the PANS PANDAS Working Group (PPWG) will be renamed as the PANS PANDAS Steering Group (PPSG). 

Established late in 2022, the PANS PANDAS Working Group (PPWG) is already making great strides towards improving the care and support available to children and young people living with PANS and PANDAS in the UK.

Early meetings of the PPWG focused on establishing the current context and situation faced by families, with a number of parents invited to recount their experiences of navigating the healthcare system.

The PPWG then collaborated to publish a statement addressing the difficulties which had arisen after the 2021 publication of the British Paediatric Neurology Association Consensus Statement and making recommendations for improvements to standards of NHS care for this cohort of young people.

With the backing of NHS England, the PPWG are embarking on work to roll out a nationwide surveillance study, designed to identify the number of children and young people presenting to healthcare professionals with symptoms matching the diagnostic criteria for PANS and PANDAS.

Alongside this effort, the PPWG is establishing a dedicated taskforce who will work towards the publication of a consensus on how these conditions should be managed in the UK.

These efforts will play a critical role in developing standards of care and in defining proper treatment pathways and service models for all those presenting with symptoms of PANS and PANDAS.

July 2023

PANS PANDAS Working Group

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The following organisations are represented in the PANS PANDAS UK Working Group:

British Paediatric Neurology Association, PANS PANDAS UK, the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, the Royal College of Nursing, the Royal College of Occupational Therapy, the British Paediatric Allergy, Infection and Immunology Group, The Royal College of General Practitioners and the British Association of Social Workers.

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