New SEND White Paper Published
The Government has released new SEND proposals within the Schools White Paper.
This article explains what these proposals may mean for families affected by PANS and PANDAS, and how you can share your views during the consultation process.
As you may be aware, the Government has released new SEND proposals within the Schools White Paper ‘Every Child Achieving and Thriving’ on 23rd February 2026, alongside a consultation on SEND reform ‘Putting Children and Young People First’ setting out long term plans to strengthen early support and inclusion in schools.
What do PANS and PANDAS families need to know?
The SEND elements of the Schools White Paper outline broad plans to improve support for children and young people with additional needs, with changes to be shaped through ongoing consultation.
The full white paper is long; however, shorter, more accessible summaries are available.
We also understand that many families may feel unsettled by the proposed reforms. Please be reassured that all current SEND rights and legal protections stay firmly in place for now and will remain unchanged throughout the consultation.
Can families can take part in the consultation?
Yes! Your voice matters, and this is your chance to make a difference. Children and young people with PANS and PANDAS need a system that recognises sudden onset changes, fluctuating needs and the importance of joined‑ up care. By responding to the consultation and sharing your experiences, you can help ensure these realities are fully understood.
“This is a chance for families to help shape a SEND system that recognises sudden changes, fluctuating needs and the need for coordinated well informed support for conditions like PANS and PANDAS, where children and young people often do not follow the linear, predictable progress that many systems assume. ”
–Tina Coope, Our Education Lead
Is PANS PANDAS UK doing a survey for this consultation?
Many of you recently contributed to our national survey, which included detailed questions about education and SEND. We know that completing this lengthy survey required a huge effort from you all, so we don’t want to ask you to fill out another one so soon. However, your responses have given us a strong, evidence‑based picture of the challenges families face.
Ensuring that families feel heard and genuinely represented is a core part of our approach. So, we plan to submit an anonymous summary of your education-related responses as part of our own reply to the government’s proposals. We believe this will also ensure that the lived experiences of children and young people with PANS and PANDAS are meaningfully represented in the consultation.
What will PANS PANDAS UK say?
We will highlight that the specific needs of children with PANS and PANDAS should be acknowledged as part of the wider SEND reform process. This conversation will include:
- underscoring the need for the new universal offer and layers of support to reflect needs that may be acquired suddenly and fluctuate over time.
- advocating for strengthened SEND and PANS and PANDAS specific‑ inclusion training for school staff.
- promoting effective multi‑agency working so that Individual Support Plans (ISPs) take proper account of both medical and educational needs.
- raising concerns about attendance policy, including the importance of recognising flare related absence as medical not behavioural, and the need for flexible timetables, adapted learning and supported reintegration.
- flagging that while schools will have a legal duty to put an ISP in place, the support itself is not statutory (legally binding) which is especially significant for children and young people with PANS and PANDAS, whose needs can change very quickly and require specialist understanding.
- noting concerns about the proposed changes to EHCP eligibility, as this may mean that fluctuating or rapidly escalating needs may not meet tighter thresholds despite requiring specialist, multi-agency support.
What else will PANS PANDAS UK do?
We will contribute to the wider consultation both as PANS PANDAS UK and as members of the Healthcare Conditions in Schools Alliance. We will also work closely with the PANS PANDAS APPG using the insights and experiences shared by families to inform our contributions.
What else do I need to know?
What is a White Paper?
A White Paper sets out the Government’s long‑term proposals and intentions. It is not law, but a statement of what the Government plans to do and a starting point for consultation.
When will any changes be brought in?
Not immediately. This consultation runs for 12 weeks until 18th May 2026.
Following this, the Government will review responses, publish final proposals, and only then may begin the process of legislation.
How will the PANS PANDAS UK community voice be represented?
Many of you recently completed our national survey, which included detailed questions about education and SEND. Your responses have given us a strong picture of the challenges children and young people with PANS and PANDAS face in education. We will use anonymised themes from this feedback in our organisational submission, so you don’t need to complete another long survey so soon. We will also be sharing the voices of our Youth Advisory board to ensure that their lived experience is reflected.
How can I personally take part in the consultation?
You can take part online via the DfE. You can also respond to the consultation via email at SENDreform.CONSULTATION@education.gov.uk, or by post to: SENDAP Reform, Sanctuary Buildings, Great Smith Street, London, SW1P 3BT
Charities such as Contact are also running a series of focus groups. You can find out more here. (Views can be submitted until the 18th May 2026).
While details are still emerging, families may want to consider highlighting the following points to the Department for Education.
- Schools need training to recognise and support sudden behavioural or cognitive changes.
- Early support must consider medical needs as well as learning needs.
- Families need access to professionals at all levels who understand PANS and PANDAS.
What are the next steps after the consultation closes?
After 18 May 2026:
- The DfE reviews all submissions to refine the proposals.
- A response document is published
- The Government decides whether to introduce legislation
- If agreed, changes would be rolled out gradually.
Nothing changes until these stages are complete.
Phased Implementation Timeline (based on what we know so far)
We still have limited detail, but the Government has shared an outline of the earliest possible timeline:
- 2025–26 academic year: Aligning with existing best practice.
- 2026–27 academic year: Preparation for SEND and curriculum reforms.
- 2028–29 academic year: Full implementation of reforms.
We do not yet know how each stage will affect children and young people with PANS and PANDAS specifically. More detail is expected.
Are my child’s or young person’s current SEND rights affected right now?
No, all existing legal duties remain fully in place throughout the process.
Where can I find more information?
- Contact have created a useful breakdown of the key points in their article ‘The schools white paper and SEND reforms‘.
- Twinkl provides a clear, parent and carer friendly overview of the proposed SEND reforms, including helpful explanations of Individual Support Plans (ISPs), how these relate to Education Health Care plans, and what the consultation period means for families. It emphasises that these reforms are proposals, not immediate legal changes.
- Kelly Jarvis from Sunshine Support has also created a clear breakdown of the SEND white paper which you can access here.
- For our members seeking a deeper understanding of the legal framework underpinning the proposed SEND reforms, we reccomend Michael Charles’ podcast SEND Reform Under the Microscope.
Mr Charles, Senior Director and Chief Executive Officer at Sinclairslaw, has previously collaborated with PANS PANDAS UK on the Sinclairslaw education magazine podcast, discussing the condition‑specific vulnerabilities of PANS and PANDAS
