PANS PANDAS Steering Group
Established late in 2022
The PANS PANDAS Working Group (which will be known going forward as the PANS PANDAS Steering Group or PPSG) was convened to address the variation in care available to children and young people presenting with symptoms of PANS and PANDAS. The PPSG has representation from the following organisations:
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.
The work of this group is supported by
Early meetings of the PPSG focused on establishing the current context and situation faced by families. Subsequently, work has focused on the publication of 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.
At present, the PPSG oversees four sub-working groups
These are:
1. The research working group has completed their application for a surveillance study. Subsequent research will centre around early phase treatment and will map out service development including acute presentations, the refractory group of patients and the relapsing group of patients. The intention is that this should lead into early intervention and antibiotic studies.
2. The consensus management group will gather professionals from all relevant fields. Independent co-chairs have been appointed. Terms of reference are in the process of being completed.
3. The service/pathway specification group will follow on from the consensus management group and will look at whether a specialist service will be commissioned through NHSE or if there may be a need for enhanced clinical pathways for local and tertiary multidisciplinary teams.
4. The education working group is in the early stages of development. It aims to develop a position statement to disseminate health and education information across Local Authorities.
PANS PANDAS UK are key stakeholders in each of these groups.
