Supporting Children with Long Covid in Education: Our Response to the DfE Consultation on Medical conditions at school: statutory guidance
- Long Covid Kids
- 2 days ago
- 4 min read
Over recent months, Long Covid Kids has contributed to the Department for Education consultation on proposed updates to the statutory guidance Supporting pupils with medical conditions at school.
The consultation sought views on how schools can better support children and young people with a wide range of medical conditions and create safer, more inclusive educational environments. It also explored areas including staff training, individual healthcare plans, incident reporting and improving consistency of support for pupils with medical needs.
Our contribution focused particularly on the experiences of children and young people living with Long Covid and overlapping illness, including the barriers many families face in accessing appropriate educational support, recognition and safe and appropriate accommodations within school settings.
Slides shared during the members meeting.
Our response was informed by:
lived experience shared by families within our community
ongoing casework and advocacy
conversations with young people
existing evidence around Long Covid, PEM/PESE and energy-limiting conditions
wider challenges faced by children who become unable to access education consistently due to chronic illness
How we contributed to the Department of Education consultation
As part of this work stream, Long Covid Kids:
participated in early draft discussions and engagement opportunities relating to the guidance
developed an accessible consultation form to enable families and young people to contribute their experiences and priorities
arranged an online members meeting with the Department for Education policy team so families could share perspectives directly
documented and analysed responses from both the consultation form and member discussions
submitted a formal consultation response to the Department for Education
provided an additional summary email to the policy team highlighting key themes and concerns raised through community participation
developed and submitted detailed suggested further revisions to the Long Covid and Clean Air sections of the draft guidance, reflecting lived experience, emerging evidence and their importance to our mission
This work aimed to ensure that the experiences of children, young people and families meaningfully informed the consultation process and were represented throughout.
What families told us
Alongside our formal consultation response, families shared important experiences and recommendations relating to school attendance, healthcare plans, flexible education, clean air and safer school environments.
Several positive developments within the draft guidance were welcomed by members, including:
recognition of Long Covid within the guidance
acknowledgement that some conditions are fluctuating and less visible
clarification that support should not be delayed pending formal diagnosis
stronger emphasis on wellbeing, inclusion and Individual Healthcare Plans
Families also identified ongoing concerns and areas requiring further action.
Alongside this blog, we have published a separate summary briefing exploring the key findings, themes and recommendations raised through member participation and lived experience during the consultation process. https://www.longcovidkids.org/post/department-for-education-what-families-told-us
These experiences highlighted a number of recurring themes and systemic challenges.
What we highlighted
Throughout the consultation, we sought to highlight several key issues repeatedly raised by families:
delayed recognition of needs and barriers to accessing support
inappropriate attendance pressures and expectations that can worsen health outcomes
lack of understanding of fluctuating, energy-limiting illness and post-exertional symptom exacerbation (PEM/PESE)
the challenges faced by children with less visible symptoms
children being left without suitable education or appropriate provision for extended periods
inconsistent experiences and access to support across schools and local authorities
the importance of flexible, individualised and child-centred approaches
the need for effective Individual Healthcare Plans and coordinated communication between education, healthcare and families
the need for improved professional understanding and staff training
safer and healthier school environments, including improved indoor air quality and clean air measures that reduce harm and support inclusion
earlier escalation pathways where support is not meeting need, including consideration of Education, Health and Care Needs Assessments (EHCNAs) where appropriate
We also emphasised that children and young people cannot afford to wait years for systems to adapt while their education, health, wellbeing and future opportunities are impacted in real time.
Importantly, we advocated for:
recognition of energy-limiting conditions within guidance
flexible and individualised educational approaches
safer and healthier school environments
improved professional understanding and staff training
coordinated support across education, health and local authority systems
timely access to suitable provision and support pathways
As always, our work is grounded in lived experience and informed by the voices of children, young people and families.
We know many families are interested in understanding how Long Covid Kids contributes to policy and consultation work behind the scenes, so we are sharing our full consultation response below for transparency and reference.
Thank you to everyone who continues to share their experiences with us. Your voices directly inform this work.
Why this matters for children with Long Covid
Childhood does not pause while systems slowly catch up.
When children are left without appropriate understanding or support, the impact reaches far beyond missed lessons.
Many children with Long Covid and overlapping illness experience loss of education, friendships, confidence, routine and opportunities during important developmental years.
Families repeatedly tell us they face barriers accessing flexible support, suitable provision and timely recognition of need, particularly where symptoms are less visible, illness fluctuates, or children experience post-exertional symptom exacerbation (PEM/PESE).
Early understanding, coordinated support and appropriate pathways can make a significant difference to a child’s wellbeing, educational access and long-term outcomes.
All children and young people deserve systems that recognise their needs, reduce harm and ensure they are not left behind.
Read our full education consultation response
Please note: consultation responses reflect the evidence and policy landscape at the time of submission. Guidance and evidence may continue to evolve.
