Bright Futures UK recently submitted its response to the Government’s SEND reform consultation, Putting Children and Young People First, calling for children and young people with long-term illness to be explicitly recognised within future reforms.
We welcome the Government’s ambition to create a SEND system that delivers earlier intervention, clearer support and more consistent outcomes for children and families. However, our response highlights a significant group of children who risk being overlooked unless health-related barriers to education are fully reflected within the new framework.
When a child is too unwell to attend school, their need for education does not disappear. Yet for many children experiencing serious physical illness, mental health challenges or ongoing treatment, support can be delayed, fragmented or difficult to access. Too often, they find themselves caught between education and health systems that were not designed around their circumstances.
Bright Futures UK estimates that 279,000 children and young people missed more than 20% of their education during 2024 because of long-term illness. Behind that figure are families trying to balance treatment, recovery and education while navigating complex systems with no clear route to support. The consequences can be significant. Children can fall behind academically, become increasingly isolated from their peers and lose confidence in their ability to return to learning.
In our consultation response, we argue that SEND reform presents an opportunity to change this. If the Government is serious about creating a more inclusive system, it must recognise that barriers to learning are not always visible within the classroom. For some children, illness itself becomes a significant barrier to accessing education, regardless of their academic ability or potential.
That is why one of our key recommendations is for long-term illness and health-related barriers to learning to be explicitly recognised within the national SEND framework. Support should be based on the impact a condition has on a child’s education, rather than solely on diagnosis or whether they meet a particular threshold for statutory support. Without clearer recognition, children who are too unwell to attend school risk continuing to fall between systems.
Our submission also called for a clearly defined pathway for children and young people whose illness creates complex, recurring or sustained barriers to education. A dedicated pathway would help families, schools, local authorities and healthcare professionals understand what support is available, who is responsible for providing it and how quickly help should begin. Greater clarity would reduce uncertainty for families and help ensure support is delivered consistently across the country.
The consultation rightly places a strong emphasis on inclusion, but inclusion must be understood as more than physical attendance at school.
For a young person facing illness, inclusion may mean:
- continuing lessons from home or hospital;
- using a flexible or reduced timetable;
- staying connected to teachers and friends;
- receiving appropriate pastoral and wellbeing support; and
- having a carefully planned return to school.
Education should be able to follow the child, wherever learning takes place.
We also welcome proposals for Individual Support Plans. However, these plans will only be effective if they provide meaningful and practical support. Families need clarity about what provision will be delivered, when it will begin, who is responsible and what happens if support is not provided. Any future system must also recognise that health conditions can fluctuate, requiring support to adapt over time as children move through treatment, recovery and reintegration.
Another key recommendation in our response was the creation of a Rapid Health-Related Education Support Route. Children undergoing treatment or experiencing a sudden deterioration in their health cannot afford to wait months for assessments and decisions while their education stalls. Triggered by appropriate medical evidence, this route would provide immediate, time-limited educational support while longer-term needs are considered. This could include remote learning, flexible attendance arrangements, reasonable adjustments, pastoral support and reintegration planning. It would not replace statutory processes where they are needed, but it would ensure children are not left without support while they wait.
Finally, our submission highlighted the need for stronger coordination between education and health services. Families caring for an unwell child should not be expected to act as coordinators between schools, healthcare professionals, local authorities and support services. A more effective system would encourage information sharing, joint planning and clearer accountability across agencies. It would also ensure that professionals understand the educational impact of fatigue, pain, medication, anxiety, trauma and prolonged absence.
Most importantly, unavoidable medical absence should never be mistaken for disengagement.
The SEND reforms offer a valuable opportunity to build a system that responds earlier, works more consistently and delivers better outcomes for children and young people. Through our consultation response, Bright Futures UK is advocating for reforms that recognise health-related barriers to learning, create clearer pathways to support, improve coordination between services and ensure children receive help when they need it.
No child should lose access to education, relationships or future opportunities because they are too unwell to attend school. Their education may need to look different for a period of time, but it must not stop.
