History of PANS PANDAS
Dr Susan E. Swedo
PANDAS was identified by Dr Susan E. Swedo in 1998 [1]. Over the following years, Dr Swedo developed working diagnostic criteria for PANDAS as more doctors across the USA and Europe reported similar cases.
Later, doctors noticed that some children with non-Streptococcal infections also developed similar sudden symptoms with an episodic course. In 2012, experts defined PANS as an umbrella term that includes PANDAS as well as cases triggered by other types of infection [2].
Current Medical Context
In the beginning of PANS and PANDAS research, the conditions faced controversy. There was confusion amongst doctors and researchers about their distinction from similar conditions such as Sydenham’s Chorea and childhood OCD. The complexity of PANS and PANDAS and uncertainty about their causes led some researchers to question whether they were genuine conditions [3].
However, recent research has made good progress in investigating the science of PANS and PANDAS. Notably, there is promising research supporting the autoimmune hypothesis of PANS/PANDAS from leading institutions such as Yale University and Columbia University [4], [5].
Unfortunately, the outdated controversy associated with PANS and PANDAS lingers, leading to a lack of awareness among healthcare professionals. For instance, 95% of parents say they did not receive PANS or PANDAS as a suggestion from their GPs (PANS PANDAS UK 2020 Parent Survey). PANS PANDAS UK’s mission to improve education and understanding around the conditions is vitally important.
Common Questions
Why is there not a NHS page for PANS or PANDAS?
In 2023, PANS PANDAS UK approached NHS Health A-Z to ask for PANS and PANDAS to be included on their website. At that time, the response was that they were unable to include information about all health conditions on the NHS website and that any new content would be dependent on user needs, clinical guidance and capacity.
Clinical guidelines for PANS and PANDAS are currently being developed with support from the Royal College of Paediatrics and Child Health. Once these are published, we will apply for the NHS website to be updated accordingly. More information about this work can be found here.
As of February 2026, PANS and PANDAS have been recognised by the House of Commons Library, a research service access by Members of Parliament and their staff to inform briefings, debates and decision-making.
What is being done to change the perception of PANS and PANDAS in the UK?
In 2022, the first meeting of the PANS PANDAS Steering Group (PPSG) was held. The PPSG is committed to improving the standards of care for people living with PANS and PANDAS in the UK.
The PPSG has representatives from PANS PANDAS UK, the British Paediatric Neurology Association, 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 PPSG is currently overseeing a number of projects to improve care and support available to young people with these conditions. These include the development of a clinical guideline (due to be published late in 2026), the publication of guidance for Local Authorities to improve support in education (also due to be published late in 2026), and the application for a nationwide surveillance study to find out how many children and young people in the UK may have PANS or PANDAS.
You can find out more about the work of the PPSG here.
