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PANS PANDAS UK contribute to NHS Major Conditions Strategy Consultation

PANS PANDAS UK contribute to NHS Major Conditions Strategy Consultation Image

PANS PANDAS UK contribute to NHS Major Conditions Strategy Consultation

In recent months, PANS PANDAS UK, alongside a number of other charitable organisations representing people with different neurological conditions, have been invited to feed into the forthcoming Major Conditions Strategy. Hosted by the Neurological Alliance, these meetings have been called in order to ensure that this new NHS strategy reflects the experiences and needs of our communities.

We were pleased to have the opportunity to discuss some of the challenges experienced by those living with PANS and PANDAS, and to make some suggestions about the ways in which the new strategy could better serve people living with neurological conditions. Our thanks go to one of our incredible young community members who attended the consultation for children and young people and spoke eloquently and with maturity about what needs to change in the future.

We look forward to seeing how the Major Conditions Strategy progresses and are grateful to both the Neurological Alliance and the Department for Health and Social Care for including us in this process.

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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