What Families Told Us: Key Themes from the Long Covid Kids Department for Education Consultation Response
- Long Covid Kids
- May 10
- 5 min read
“Attendance pressure created a PEM boom–bust cycle, worsening health and preventing GCSE access.” — Parent contributor
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.
Alongside our formal consultation response, families within our community shared experiences and recommendations relating to school attendance, healthcare plans, flexible education, clean air and safer school environments.
This briefing summarises the key themes and recommendations raised through member participation and lived experience during the consultation process.
Our findings reflect the experiences of children and young people living with Long Covid and overlapping illness, while also highlighting wider systemic issues affecting children with chronic, fluctuating and energy-limiting conditions. Many children experience significant limitations in daily activities, including school attendance, and families frequently report inadequate understanding, inconsistent support and, in some cases, harm arising from current systems and practices.
Positive developments welcomed by families
Members welcomed several aspects of the draft guidance, including:
recognition of Long Covid as a medical condition within the guidance
greater emphasis on wellbeing, inclusion and safety
acknowledgement that some medical conditions may be fluctuating and less visible
clarification that support should not be delayed pending formal diagnosis
strengthening of Individual Healthcare Plans (IHPs)
Families felt these developments represented important progress and provided a foundation for meaningful improvement.
The themes summarised below reflect the experiences and recommendations shared by families through our consultation process, with the full submission and supporting evidence available at the end of this blog.
Banner created from artwork shared by children around the world
Key themes raised by families when considering the Department for Education draft policy guidance
Attendance pressures and worsening health
Families repeatedly described situations where attendance expectations did not adequately reflect the realities of fluctuating or energy-limiting illness.
Many parents reported feeling pressured to prioritise attendance over health, including during periods where children were experiencing significant symptom exacerbation.
Families highlighted concerns that inappropriate expectations around school participation, activity levels or reintegration could contribute to deterioration in health and wellbeing.
Several families described “boom and bust” cycles, where attempts to maintain attendance beyond a child’s physical capacity led to deterioration in health and prolonged absence.
“Attendance thresholds should trigger support, not punishment.” — Parent contributor
Lack of understanding of fluctuating and less visible illness
Families described ongoing challenges where symptoms were not always visible or consistent from day to day.
Many reported difficulties accessing understanding and appropriate accommodations where children appeared “well enough” at times but experienced significant delayed impacts following physical, cognitive, emotional or social exertion.
Post-exertional symptom exacerbation (PEM/PESE) was repeatedly identified as poorly understood within educational settings.
“Long Covid must be recognised as a chronic disabling condition, not short-term fatigue.” — Parent contributor
Delays and barriers accessing support
Families described difficulties obtaining timely support, appropriate accommodations and coordinated responses across education and healthcare systems.
Several parents reported that support was delayed while awaiting diagnosis, formal assessment or specialist input, despite significant functional impact already being evident.
Concerns were also raised regarding inconsistent approaches between schools and local authorities.
Medical evidence and NHS gaps
Families highlighted the challenges created by limited NHS provision and the closure of specialist Long Covid services in some areas.
Many described difficulties obtaining timely medical evidence, while others reported that private medical evidence was not accepted despite long waits for NHS support.
Parents repeatedly raised concerns about the burden of ongoing requests for repeat evidence and documentation while already managing significant caring responsibilities.
Safeguarding and family impact
Some families described experiences where medical absence was treated as truancy or safeguarding concern despite medical evidence being provided.
Parents reported that attendance processes, welfare meetings and safeguarding pathways sometimes created additional distress and trauma for children and families already managing serious illness.
Families emphasised the importance of collaborative, health-informed approaches that distinguish chronic illness from behavioural or attendance issues.
“Medical absence must not be treated as truancy or safeguarding concerns.” — Parent contributor
Flexible education and suitable provision
Many families highlighted the need for more flexible, needs-led educational approaches.
This included:
hybrid and remote learning options
flexible timetabling
reduced timetables where clinically necessary
flexible exam arrangements and staged qualifications pathways
support for non-linear reintegration
suitable alternative provision where full-time attendance is not possible
Families emphasised that educational access should be based on safety, wellbeing and functional capacity, rather than attendance targets alone.
Families also highlighted inconsistent access to reasonable adjustments and exam support for chronically ill students.
Some families described periods where children were housebound, bedbound or too unwell to engage with standard educational approaches.
“Rigid systems prevent children from accessing education appropriately.” — Parent contributor
Individual Healthcare Plans and coordinated support
Families welcomed the stronger emphasis on Individual Healthcare Plans (IHPs) within the draft guidance but highlighted ongoing inconsistencies in implementation.
Parents stressed the importance of:
meaningful collaboration with families
clear communication between education and healthcare professionals
personalised approaches reflecting fluctuating need
regular review processes
ensuring IHPs complement rather than replace statutory support pathways where required
Environmental safety and clean air
Many families highlighted the importance of safer school environments, including indoor air quality and infection risk reduction measures.
Parents described concerns about repeated infections, the impact this may have on children with existing medical conditions, and the barriers some vulnerable children face accessing education safely.
Families supported proportionate clean air measures that improve safety and inclusion for all pupils, while offering particular benefit to children with certain medical conditions.
Five priorities raised by families
Based on the experiences shared throughout the consultation process, five overarching priorities consistently emerged.
1. Health-first implementation
Families emphasised the need for policies and practice that prioritise health and wellbeing alongside attendance.
This included recognising deterioration and post-exertional symptom exacerbation (PEM/PESE) as important indicators of harm and ensuring that support approaches do not worsen health outcomes.
2. Flexible, needs-led education pathways
Families called for greater flexibility within education systems, including access to hybrid, remote and home-based learning where appropriate.
Many also highlighted the need for long-term flexibility, non-linear reintegration and support pathways that reflect fluctuating illness rather than fixed expectations.
3. Identification and support based on functional impact
Families stressed that children should be able to access support based on demonstrated need and functional impact, without unnecessary delays awaiting formal diagnosis.
Parents also highlighted the importance of recognising a broad range of evidence, including parental observations and lived experience.
4. Strengthened accountability and coordinated support
Many families described confusion regarding responsibilities across education, healthcare and local authority systems.
Parents highlighted the need for:
clearer accountability
improved coordination
earlier escalation pathways where support is insufficient
better integration between Individual Healthcare Plans and statutory support processes, including Education, Health and Care Plans (EHCPs)
5. Environmental safety and clean air
Families consistently highlighted the importance of healthier and safer indoor environments and proportionate approaches to indoor air quality.
Many felt that clean air measures should be recognised as part of wider efforts to support safe, sustainable and inclusive access to education for all children and young people.
Conclusion
Children with Long Covid and overlapping illness are not consistently supported by systems that fully recognise or accommodate their needs. Families described situations where lack of understanding, inflexible systems and delayed support contributed to avoidable deterioration in health, education and wellbeing.
This consultation represents an important opportunity to strengthen guidance, improve consistency and create safer, more inclusive educational environments for children with medical needs.
The experiences shared by families demonstrate the importance of approaches that are flexible, collaborative, health-informed and responsive to fluctuating need.
All children and young people deserve systems that recognise their needs, reduce harm and ensure they are not left behind.
“Return to education is non-linear; school should not be treated as the only priority in recovery.” — Parent contributor
Submitted to the Department for Education during the consultation on Supporting Pupils with Medical Conditions at School on behalf of children, young people and families affected by Long Covid and overlapping illness. April 2026
