PANS PANDAS UK

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Unfortunately, the outdated controversy associated with PANS and PANDAS lingers, leading to a lack of awareness among healthcare professionals.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 no NHS page for PANS/PANDAS?

Currently, both NICE and SIGN say there is not enough research to produce medical guidelines for PANS and PANDAS in the UK. This, as well as a lack of information about how many people are affected by the conditions, means there is currently no NHS page for PANS or PANDAS.

Academic science follows strict standards. Although ongoing research is promising, conclusions cannot be made until a large amount of high-quality evidence has been published.

This does not mean that the NHS does not recognise PANS and PANDAS and it does offer support for people living with the conditions, although there is still some variation in what is offered across the country. The NHS is actively working with PANS PANDAS UK to improve the diagnosis, treatment and support offered to people with PANS and PANDAS.

What is being done to change the perception of PANS and PANDAS?

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/PANDAS by producing multidisciplinary guidelines for best practice.

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, independent social workers, and parents of PANS or PANDAS patients.

Currently, this group is working to roll out a surveillance study which will help to find out how many children and young people in the UK may have PANS or PANDAS. Alongside this work, a taskforce is assembling to reach an agreement on how the conditions should be treated in the UK. You can find out more about the PPSG here .

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Glossary

  • ADHD
    Attention Deficit Hyperactivity Disorder
  • AE
    Auto-immune Encephalitis
  • ARFID
    Avoidant Restrictive Food Intake Disorder
  • ASD
    Autism Spectrum Disorder
  • CAMHS
    Child and Adolescent Mental Health Service
  • CBT
    Cognitive Behavioural Therapy
  • Dysgraphia
    difficulty writing by hand
  • EHCP
    Education, Health and Care Plan
  • Emotional Lability
    Rapid, and dramatic changes in mood (for example uncontrollable laughter to crying)
  • Enuresis
    wetting
  • GAS
    Group A Streptococcal infection
  • NHSE
    NHS England
  • NICE
    National Institute for Health and Care Excellence
  • OCD
    Obsessive Compulsive Disorder
  • PP
    PANS PANDAS
  • PPUK
    PANS PANDAS UK
  • PPN
    PANS Physicians Network
  • PPSG
    PANS PANDAS Steering Group
  • SENCo
    Special Educational Needs Coordinator
  • SIGN
    Scottish Intercollegiate Guidelines Network to the glossary
  • Tic
    Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control