Response to Call for Evidence: Young People and Work Report
- Long Covid Kids
- 1 day ago
- 8 min read
Updated: 8 hours ago
Submitted on behalf of Long Covid Kids and Friends
Our evidence draws on a combination of lived experience, formal testimony and emerging research, including:
Lived experience of young people who are unable to sustain education, training or employment due to ongoing ill health.
Testimony submitted to the UK COVID-19 Inquiry by parents and carers describing their experiences navigating education, healthcare and benefits systems on behalf of their children and young people affected by Long Covid.
Observations from peer support networks supporting young people aged 11–21 who are ‘economically inactive’ as a direct result of Long Covid.
Emerging peer-reviewed and policy-relevant research on Long Covid in children and young people.
We are increasingly concerned that Long Covid is a significant but under-recognised driver of the rise in young people who are Not in Education, Employment or Training (NEET), particularly among those classified as economically inactive due to health conditions. Paediatric Long Covid is more prevalent than many believe. Long covid is on track to become one of the most common chronic conditions of childhood.
Taken together, this evidence reflects the experiences of a substantial and geographically diverse cohort of children, young people and families across the UK, and provides insight into how Long Covid is contributing to sustained disengagement from education, training and employment among young people.
1. What is stopping more young people from participating in employment, education or training?
a) Long Covid as a disabling health condition
Long Covid is on track to be the most significant childhood condition and commonly presents with symptoms including, but not limited to:
Debilitating fatigue and post-exertional symptom exacerbation
Cognitive dysfunction (“brain fog”) affecting memory, processing speed and
concentration
Multi system symptoms impairing mobility and physical health
Autonomic dysfunction, breathlessness, pain, headaches and sleep disturbance
These symptoms are often invisible, fluctuating and unpredictable, making regular attendance, fixed schedules and sustained cognitive effort extremely difficult.
Many young people affected:
Want to study or work but cannot reliably commit to hours or deadlines
Experience symptom exacerbation following physical or cognitive exertion
Are forced to withdraw from education or employment after repeated attempts to “push through” without appropriate support or understanding of the condition
Report that managing a complex condition is a “full time job”
This results in disengagement driven not by lack of aspiration, but by physiological limitation. Attempts at engagement without adequate support may also result in significant, and long term deterioration in health.
b) Inflexible education, training and employment structures
Current systems are typically designed around:
Consistent attendance and attendance based awards
Linear progression
Full-time or fixed-hours participation
Young people with Long Covid and overlapping illnesses often require:
Reduced or flexible hours
Remote or hybrid options
Flexible deadlines and pacing
Periods of sustained rest
Where such flexibility is unavailable or poorly understood, young people are effectively
excluded. Families report that illness-related absence is frequently misinterpreted as anxiety, lack of motivation or behavioural difficulty. In some cases, parents have faced punitive responses or safeguarding concerns, compounding stress and disengagement.
c) Gaps and barriers within the healthcare system
Key challenges include:
Lack of mandatory training and limited understanding of Long Covid and overlapping illnesses
Long waiting times for assessment
Closed or limited paediatric and adolescent Long Covid services
Inconsistent clinical recognition and diagnostic uncertainty
Without formal diagnosis, supporting medical documentation and specialist input, young people struggle to:
Access reasonable adjustments in education or employment
Evidence eligibility for disability-related benefits to fund essential support costs
Validate their condition to employers, educators or Jobcentres
This leaves many in a prolonged limbo: too unwell to participate, but insufficiently supported to recover or adapt.
d) Benefits and employment support systems not fit for fluctuating illness
Young people with Long Covid frequently fall between existing systems:
They may not meet traditional definitions of disability
They may be assessed as capable of work despite being unable to sustain it
Work capability assessments rarely reflect:
Post-exertional symptom exacerbation
The cumulative impact of cognitive fatigue
The risk of deterioration caused by inappropriate work-related requirements
The need to manage essential daily living tasks alongside any work-related activity
As a result, some young people and families disengage from support altogether to avoid sanctions or further harm to their health and financial security .
e) Psychological and social consequences of prolonged exclusion
Extended absence from education or employment can lead to:
Loss of confidence and identity
Social isolation
Secondary anxiety or low mood driven by exclusion rather than causative of it
In many cases, mental health difficulties are better understood as a consequence of prolonged illness and systemic barriers, rather than the primary driver of economic inactivity.
f) Under-recognition and under-diagnosis of Long Covid in children and young people
A significant barrier to effective support is the continued under-recognition and under-diagnosis of Long Covid in children and young people. Many affected children do not receive a formal diagnosis, or do not recognise their symptoms as Long Covid, due to limited clinical awareness, inconsistent diagnostic pathways, and insufficient public health communication.
As a result, changes in behaviour, physical capacity or mental health may be attributed to anxiety, school refusal or other causes, rather than recognised as manifestations of post-viral illness. This has implications for access to healthcare, reasonable adjustments, benefits eligibility and inclusion within official data on health-related economic inactivity.
Under-recognition also means that the true scale of Long Covid among children and young people is likely underestimated. This risks misinforming policy responses, particularly where NEET status is attributed to mental health or disengagement without consideration of underlying, undiagnosed physical illness.
Improved recognition, diagnostic clarity and public health communication are therefore essential to understanding the drivers of youth economic inactivity and ensuring affected young people are not excluded from support due to lack of diagnosis.
2. What would make the biggest difference to support more young people to participate?
a) Formal recognition of Long Covid as a cause of youth economic inactivity
Acknowledging Long Covid as a contributor to NEET figures would:
Improve data collection and policy design
Reduce stigma and mislabelling
Ensure affected young people are visible within employment, education and health strategies
Validate lived experience and help rebuild trust in public systems
Inform policy development and service planning
b) Flexible, health-led pathways into education, training and work
Young people with fluctuating conditions need:
Part-time and modular study options
Remote and hybrid learning and working as standard rather than exception
Pacing-based approaches that support engagement
Sufficient access to flexible or remote learning
Clear guidance to support reasonable adjustments
Flexibility should be embedded within systems rather than dependent on individual discretion.
c) Better integration between health, education, employment and benefits
systems
Effective support requires:
Shared understanding of fluctuating illness across systems
Earlier recognition and intervention
Joined-up transitions between school, further education, higher education and work
Employment support that prioritises health stabilisation over rapid labour market entry
d) Improved clinical pathways for children and young people Investment is needed in:
Paediatric Research
Timely access to Long Covid services for under-25s
Training for clinicians on infection associated chronic conditions including energy-limiting conditions such as Long Covid, ME and overlapping illnesses.
Clear guidance to support reasonable adjustments
Health stability is a prerequisite for participation, not an optional extra.
e) Reform of benefits and employment assessments for fluctuating conditions
Assessments should:
Accurately reflect variable and sustained capacity
Recognise that inability to sustain work can be as disabling as inability to start it
Avoid requirements that risk relapse or long-term deterioration
Enable gradual re-engagement, without penalising illness and recognise the challenges of fluctuating disease.
f) Healthier work and learning environments: reducing infection-associated
illness
Sustained participation in education, training and employment also depends on reducing infection-associated illness, including Long Covid. Repeated infections, and reinfections, can undermine recovery, exacerbate symptoms and contribute to long-term disengagement.
Key measures include:
Meeting World Health Organization indoor air quality guidelines in educational settings.
Provision of HEPA filtration, CO₂ monitoring and appropriate staff training.
Clear, consistent infection prevention and isolation guidance across the four nations.
Support for the use of high-quality, well fitting masks without restriction or stigma.
Improving indoor air quality and infection prevention would reduce the risk of long-term illness and support sustained participation. The benefits of healthier indoor environments are well documented.
Conclusion
Many young people who are currently NEET due to Long Covid are:
Highly motivated
Academically capable with appropriate accommodations and support
Keen to contribute
Seeking equitable and inclusive opportunities
Concerned about their place in society and future prospects
This evidence demonstrates that NEET status among young people affected by Long Covid often reflects cumulative systemic gaps within compulsory education, healthcare and attendance frameworks. By the time these young people reach working age, many are already educationally disadvantaged, physically unwell, and psychologically impacted by prolonged disbelief, exclusion and unmet health needs, limiting their ability to access further training or employment.
Their disengagement is driven not by lack of aspiration, but by structural, health-related and systemic barriers that constrain sustained participation over time. Addressing youth economic inactivity therefore requires intervention earlier in the pipeline, including health-informed attendance practices, flexible learning pathways, environments that reduce the risk of further illness, and continued investment in research to improve understanding, diagnosis and management of Long Covid in children and young people.
Without coordinated reform across education, health and employment systems, there is a risk that young people affected by Long Covid will continue to be excluded long before they reach the labour market. Targeted recognition, flexibility, research-informed policy and joined-up support would enable many to re-engage, supporting both individual life chances and long-term workforce participation.
It is also important to recognise that a proportion of children and young people experience severe or very severe Long Covid and are currently unable to engage in education, training or employment in any capacity. Their absence from participation-focused initiatives reflects the severity of their illness rather than disengagement. For this group in particular, progress depends on sustained investment in research, clinical recognition and effective treatments; without this, economic inactivity is likely to persist regardless of education or employment interventions.
30th January 2026
Supporting Information:
1. RECOVER Study:
2. A Long COVID Definition: A Chronic, Systemic Disease State with Profound
Consequences (2024) National Academies of Sciences, Engineering, and
Medicine. 2024. A Long COVID Definition: A Chronic, Systemic Disease State with
Profound Consequences. Washington, DC: The National Academies Press
3. A clinical case definition for post COVID-19 condition in children and adolescents
by expert consensus, 16 February 2023
https://www.who.int/publications/i/item/WHO-2019-nCoV-Post-COVID-19-conditionCA-Clinical-case-definition-2023-1
4. Witness Statement of Sammie McFarland On Behalf of Long Covid Kids,
5. Witness Statement of Helen Goss On Behalf of Long Covid Kids Scotland,
6. SEND and Attendance, Every Day Hurts: Reframing School Absence For Families
Living with Chronic Illness, Sarah Craner (Pg 1)
7. LCK Schools Survey: Disruption to Education and Development
https://www.longcovidkids.org/post/how-does-long-covid-impact-attendance-and-educational-experiences
8. Long Covid Kids Educational Toolkit, covering the support children and young people
with Long Covid need to engage with Education.
9. Support for people with Long COVID to return and stay at work
10. Linked Folder
11. Children Missing In Education, covering Long Covid as a health disadvantage.
12. Long Covid Kids Case Studies, covering the experiences of families
13. Supplementary Written Evidence On School Absences, covering persistent and
severe absence in schools with a focus on supporting disadvantaged pupils
14. Copies of The Witness Statements of Sammie McFarland and Helen Goss, and the
SEND and Attendance Article
Long Covid Kids and Friends is a UK-wide community representing children, young people and families affected by Long Covid and overlapping illnesses, including ME, PoTS, PANS and MCAS. We support 11,000 families whose children and young adults experience prolonged, fluctuating and often disabling symptoms following COVID-19 infection. We are members of the Health Conditions In Schools Alliance and Overlapping Illness Alliance.
To read further blogs and information visit out website.
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