PANS PANDAS UK

UK Government Launches UK Neuro Forum

UK Neuro Forum image

PANS PANDAS UK welcomes the announcement from Andrew Gwynne MP, Parliamentary Under-Secretary of State at the Department of Health and Social Care, of a new UK-wide forum to address gaps in treatment and care for people affected by neurological conditions. 

The announcement follows a long-standing campaign led by The Neurological Alliance together with The Neurological Alliance of Scotland, Wales Neurological Alliance and the Northern Ireland Neurological Charities Alliance and supported by over 100 organisations and more than 19,000 people. 

The forum will meet twice a year and will include representatives from the Department for Health and Social Care, NHS England, devolved governments and Neurological Alliances of all four UK nations.  We are pleased to share that our Chair of Trustees, Vicky Burford, will be attending the first forum meeting in early 2025. 

The forum will unite clinical leaders, organisations, and people with lived experience of neurological conditions to tackle shared challenges. Shaped by those it serves, the forum will aim to drive real progress in areas where UK-wide collaboration is most impactful. It will aim to address unwarranted variation in access to care across the country and drive person-centred care.  

PANS PANDAS UK is hopeful that that the formation of this forum will allow collaboration across the four nations in implementing the work and recommendations of the PANS PANDAS Steering Group.  

To read the full press release from the Neurological Alliance click here.

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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