PANS PANDAS UK

PANS PANDAS UK calls on new Health Secretary for action

PANS PANDAS UK are pleased to share the publication of our open letter to the new Secretary of State for Health and Social Care, Mr. Wes Streeting, MP. 

In this letter our Chair of Trustees, Vicky Burford, outlines the current challenges facing people living with PANS and PANDAS in the UK and calls upon the new Health Secretary for support. You can read the open letter in full here. 

Download Open Letter

Call to action!

Whilst we await a response from the Health Minister, we must now ask for your support. Due to changes in the rules for APPGs, and the changes which have ensued as a result of the July 2024 General Election, the PANS PANDAS All-Party Parliamentary Group (APPG) has temporarily lapsed. 

The new APPG rules require four officers and a further 16 members in order for our APPG to reform. We are delighted to share that Wendy Chamberlain, MP who led the PANS PANDAS Parliamentary Backbench Debate in September last year will be leading on this important work.  

We call upon all community members to get in touch with their local MP and encourage them to represent you in Parliament by joining the PANS PANDAS APPG. We desperately need a strong APPG to ensure that the Government supports the drive for change for all children, young people and adults living with PANS and PANDAS. 

How can you help?

  • Write to your MP and ask them to join the APPG 
  • Share our open letter to the Health Minister on social media (you might consider tagging in @Wes Streeting and @DHSCgovuk) 
Download Template LetterDownload Open Letter
Footer Pattern

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