Shape new guidance for pupils with medical needs
The Department for Education has released its updated draft guidance: Improving Support for Children and Young People with Medical Conditions and Allergy.
This marks a significant moment for all families and professionals supporting pupils with medical needs, including our PANS and PANDAS UK community.
We are pleased to share that PANS and PANDAS are now explicitly listed within the draft guidance on page 64. This recognition reflects years of progress and the commitment of families, educators and clinicians who have helped raise awareness of these conditions. While the process is still ongoing, this draft represents a meaningful step forward in ensuring that children and young people with PANS and PANDAS are more clearly understood and supported within education settings
Why does this draft matter?
For many in our community, navigating medical needs support in education has been challenging. Families often describe experiences such as:
- Symptoms being misunderstood as behavioural rather than medical
- Varied or outdated interpretations of PANS and PANDAS
- Hesitation around accepting private diagnoses
- Questioning the validity of diagnosis
- Significant differences between Local Authorities’ approaches
- Uneven access to reasonable adjustments, Individual Healthcare Plans and medical support
- A lack of clarity about how fluctuating conditions should be accommodated
These ongoing issues mean that national guidance plays a crucial role. Clearer recognition of PANS and PANDAS has the potential to improve consistency across schools and strengthen support for pupils with these complex medical needs.
What does it say about PANS and PANDAS?
Within the draft document, the guidance for pupils affected by PANS and PANDAS currently suggests:
“Flexible, low-demand approaches such as reduced cognitive load, rest breaks, alternatives to handwriting, quiet spaces and paced expectations may be required to support access to education. For some children and young people, periods of part-time attendance or home-based learning may be needed. Where the level of support required amounts to special educational provision, it may be appropriate to request an Education, Health and Care (EHC) needs assessment.”
– Taken from page 64
Can I take part in the consultation?
Absolutely! Just like the recently-released government SEND proposals, your voice matters and this is your chance to make a difference. This draft is not yet final, and the consultation period is a key opportunity for our community to help shape the final version. Our friends at Special Needs Jungle have produced this helpful overview of the guidance, what is means and how you could respond.
The consultation runs until Friday 1st May.
“This consultation offers an important opportunity to help the DfE understand the medical needs of children with PANS and PANDAS. Families know better than anyone how these conditions affect daily life, learning, and school participation. By sharing your experience, you can help shape guidance that reflects the realities children and young people face, and ensures they receive the understanding and support they need in school.”
– Tina Coope, Our Education Lead
