Our response to the SEND consultation
We have submitted our response to the Government’s new SEND proposals, developed as part of the schools white paper.
This article explains what these proposals may mean for families affected by PANS and PANDAS, and the community views we shared in our response.
What does our response mean for families?
We believe that responding to these reforms is important for families affected by PANS and PANDAS. These are medical conditions that can cause a child or young person to suddenly lose skills such as learning and concentration, sometimes in just a few days. Too often, this change is misunderstood. Children or young people may be seen as anxious, having behaviour problems, or avoiding school, when they may actually be seriously unwell. This misunderstanding can prevent parents from accessing the right help, a delay which can make things worse.
We welcome aspects of the proposed reforms, particularly the focus on earlier support and better working between services. However, we are concerned about how this will work in practice for families. Some proposals could reduce important rights for parents and carers. There is a risk that support may become less clear and harder to challenge if it is not put in place, making it even more difficult for families to secure the help they need.
What did PANS and PANDAS families tell us?
Our response is based on what families, children and young people have shared with us. For example, findings from our PANS PANDAS UK 2026 Speak Up survey show consistent challenges:
- Many children and young people are missing a lot of school
- Children and young people may lose learning skills and struggle to keep up
- Symptoms are often misunderstood and not recognised as a medical need
- Families are often left to coordinate between schools and health services
- Support can be delayed, inconsistent, or slow to adapt when needs change
Children and young people with PANS and PANDAS often have needs that change quickly. They do not fit neatly into pre-determined packages and need flexible support that can respond as their needs change. We also highlight that severe and complex needs can develop at any age, not just in early years, and that support systems must reflect this.
We identified several gaps in the proposed reforms:
The role of health services is not clearly set out, even though this is essential for medical conditions such as PANS and PANDAS.
Education Otherwise Than At School (EOTAS), used when a child or young person cannot attend school, is not explicitly mentioned. It is also unclear whether this support will be included as part of specialist provision packages. This lack of clarity is a concern for families whose children or young people are unable to attend school.
We also felt that proposing a time limit for alternative provision does not reflect the unpredictable and changing nature of these conditions.
It is important that families keep their rights. Parents and carers must still be able to challenge decisions if the right support is not in place, and the SEND Tribunal must continue to make sure children and young people get the support they need.
Significantly, many of the principles in the reforms, such as early identification, joined‑up working, and support based on need, are already part of current law. The key issue is making sure these are delivered in practice so families do not have to fight for support
What did PANS PANDAS UK say in response?
In our response, we called for:
- Better understanding of sudden changes as a possible medical warning sign
- Training for professionals in PANS and PANDAS, so children and young people are recognised early and supported correctly
- Flexible support that can change quickly when needs change
- Clear accountability across services, with clarified involvement from health services, including in support plans
We also shared a SEND briefing with the PANS PANDAS APPG to help raise awareness at a national level and support better understanding within Parliament.
Our response is shaped by the voices of families, parents and carers, children and young people. We also recognise the wider SEND community, including Michael Charles from Sinclairslaw, NASEN, Special Needs Jungle and IPSEA, whose insight has helped inform this work.
Further information:
- Read our SEND reforms briefing document for MPs
- Learn more about the consultation process
- Find out more about the PANS PANDAS APPG
