PANS PANDAS UK

Youth Board members having their say in Westminster!

Youth Board members having their say in Westminster!

A letter written by a group of our incredible Youth Board members was hand-delivered to Maria Caulfield earlier this week.

Robin Millar, MP met with the Parliamentary Under Secretary of State at the Department of Health and Social Care and Chair of the new SEND reform board to discuss PANS and PANDAS with her, and to ask for her support in improving the care and support available to our community.

We took the opportunity to share a letter with Maria, in which our Youth Board members expressed how living with PANS and PANDAS has impacted on their time in education and asking her to keep children with the conditions in her mind as she helps to roll out the new SEND reforms.

We are so grateful to Maria Caulfield and Robin Millar for taking the time to discuss how to improve things for all families living with PANS and PANDAS. Equally important, huge thanks to all of our Youth Board members who are so generous with their time and dedication to making positive change happen for others like them.

If you, or someone you know between the ages of 8 and 21, would like to apply to join our Youth Board, please click here for more information.

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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