PANS PANDAS UK

Yesterday was an exciting day!

Yesterday was an exciting day!

Following some serious Twitter action from a group of tenacious parents on our facebook support group over the last few weeks, we received the welcome message from Dr Sarah Jarvis that she would be covering the conditions in her ‘Medical Monday’ on the Jeremy Vine BBC Radio 2 show.

Dr Sarah Jarvis took the time to speak with us about the conditions ahead of the show and was saddened to hear about the difficulties faced by families affected by PANS and PANDAS in accessing support.

Both Dr Sarah Jarvis and Jeremy Vine spoke eloquently and with compassion about the conditions, the probable causes and the serious effects of the lack of provision in the UK for acknowledging and treating these conditions. They took calls and emails from parents of children with PANS and PANDAS who spoke about their own experiences with PANS.

One thread which ran through all of the stories was that each person who spoke had needed to visit a private doctor in order to find answers. One contributor’s daughter had been ill for a full 9 years before she was finally given a diagnosis and offered treatment.

This is sadly a story we hear time and time again, and we sincerely hope that it is one which we will hear less frequently as more awareness is raised.

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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