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Our Work in Parliament 

Date Published: 20/05/2025

PANS PANDAS UK works closely with key stakeholders and policymakers in order to expedite improved care and support for everyone affected by PANS and PANDAS in the UK.

We are pleased to share with you a timeline of our parliamentary engagement which gives a high-level overview of the charity’s work in recent years to influence policy and increase political pressure to improve services. 

To all those of you who have engaged with your MPs, supported other parents within our in-person and online support groups, raised awareness with local and national stakeholders, we would like to say a huge thank you. Without these key efforts, none of what we do would be possible. 

May 2025.

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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