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Have your say on SEND reform

Date Published: 03/12/2025

The government has launched its biggest national conversation on Special Educational Needs and Disabilities (SEND) in a generation. Parents, caregivers and professionals are being invited to shape a reformed SEND system that crucially works for children and families.

Children/young people with these conditions often face significant challenges in education, including:

  • Access to timely support during sudden onset of symptoms.
  • Flexibility in attendance and exams when health fluctuates.
  • Having medical needs recognised and supported
  • Training for school staff to understand neuropsychiatric symptoms, promoting early identification and accurate assessments.
  • Clear pathways for reasonable adjustments, including flexible learning options when needed.
  • A multi-Disciplinary Team (MDT) approach ensuring education, health, and social care work together to provide joined-up support for children/young people.

The government’s engagement focuses on five key principles: early intervention, local provision, fairness, effective practice, and shared working across education, health, and social care. These principles closely align with the needs of children, young people, and their families affected by PANS and PANDAS.

As a member of the Council for Disabled Children network, PANS PANDAS UK will be contributing to this engagement process, helping ensure that the needs of children/young people with PANS and PANDAS are considered in the wider conversation about SEND reform

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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