Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

🌿 LONG COVID IN WELSH CHILDREN — PART 1 March

🌿 LONG COVID IN WELSH CHILDREN — PART 1

How Long Covid affects daily life, school attendance and your childs rights in Wales

A Learn Without Limits CIC Guide


Across Wales more and more parents are telling us the same story.
Their child caught Covid a long time ago but has never fully recovered.
Some days they manage a lesson or two, other days they crash completely. Many children look fine one moment and then are wiped out the next.

Despite this, many families feel they are not being believed or understood.
Some are told their child is anxious.
Some are told the problem is attendance.
Others feel dismissed entirely.

This guide aims to give you clear and confident guidance based on the system in Wales so that you can support your child without doubt or hesitation.

This is Part 1.
Part 2 will look at health services, referrals, mental health, tuition, social care and practical steps you can take straight away.


1. What Long Covid is in children

Long Covid describes symptoms that continue for many weeks or months after a Covid infection. It is recognised in children and young people. Symptoms can be physical, emotional or cognitive and they often fluctuate. A child can appear well one moment and then deteriorate quickly after school, exercise or even brief concentration.

Long Covid is not school refusal.
It is not a lack of resilience.
It is not a behaviour issue.
It is a genuine health condition that requires understanding, patience and a clear plan.


2. How many children in Wales are affected

At the moment Wales does not publish child specific Long Covid figures. This lack of official data is becoming a problem because families often assume the issue is rare when the truth is that Wales has simply not counted children separately.

Here is what we do know.

Public Health Wales has reported that around ninety six thousand people in Wales have experienced ongoing symptoms after a Covid infection. That is about three percent of the population.
(See Source 1)

The Office for National Statistics reports that among children who tested positive for Covid:
• around one in ten children aged two to eleven
• around thirteen percent of young people aged twelve to sixteen
still had symptoms at five weeks after infection.
(See Source 2)

Meta studies suggest that between eight and twenty percent of children experience ongoing symptoms after infection, depending on the definition used.
These symptoms often include fatigue, pain and cognitive difficulty.
(See Source 3)

So even though Wales does not currently publish child specific figures, the wider United Kingdom evidence makes it clear that many children are affected.


3. Can children be affected for years and can Long Covid cause disability

Parents ask this often because their child does not recover within the timeframes they were originally told.

3.1 Can Long Covid last for years

Yes.
Research shows that some children remain unwell for many months or years after infection.
Symptoms may come and go or remain steady over long periods of time.
(See Source 3)

3.2 Can Long Covid cause disability

Yes.
The United Kingdom Covid Inquiry has acknowledged that Long Covid can cause long term activity limiting illness in children and young people.
This includes fatigue, cognitive difficulty and reduced ability to take part in normal daily life.
(See Source 4)

In Wales, a long term health condition that limits daily life can meet the definition of disability. This means families may have important rights in education and social care.


4. What Long Covid looks like day to day

No two children are identical, but research and lived experience show clear patterns.

4.1 Physical symptoms

• severe and persistent fatigue
• shortness of breath
• headaches and muscle pain
• dizziness or difficulty standing
• relapse after small amounts of activity, known as post exertional symptom exacerbation
(See Source 3)

4.2 Cognitive impact

• difficulty concentrating
• slower processing
• reduced short term memory
• sensory overload
• trouble keeping up in lessons
(See Source 3)

4.3 Emotional and social impact

Children may feel anxious, frustrated or sad because they cannot keep up with friends or school.
Many lose confidence after repeated periods of illness or absence.
(See Source 3)

If this describes your child, you are not imagining it. These difficulties are widely reported in research and in families across Wales.


5. Why school becomes difficult and why it is often misunderstood

5.1 School requires sustained energy

Schools involve constant movement, concentration, noise and transitions.
A child with Long Covid may manage a short period but then crash for the rest of the day.
Some appear fine in school but collapse the moment they get home.

5.2 Misinterpretation of absence

The Covid Inquiry reports that children with Long Covid can experience long term limitations that affect attendance. These limitations are sometimes misunderstood by schools and attendance teams.
(See Source 4)

5.3 What schools should do

Schools should medically authorise absence where a child has a recognised health condition.
They should adapt expectations, provide rest breaks and work collaboratively with families.

Attendance pressure does not improve a health condition. In many cases it makes symptoms worse.

Internal link placeholder: Attendance guidance for families in Wales


6. Reduced timetables and flexi schooling

Parents often hear two terms and do not always know the difference.
Here is the clearest explanation.

6.1 Reduced timetables

A reduced timetable means the child attends school for fewer hours or fewer subjects.
It is intended to be a short term plan to support recovery.
It must be reviewed often.
https://learnwithoutlimitscic.blogspot.com/2025/12/reduced-timetables-in-wales-parent-guide.html

6.2 Some schools call reduced timetables flexi schooling

This creates confusion.
If a school tells you they are offering flexi schooling, sometimes they actually mean a reduced timetable.
These two arrangements are very different.

6.3 What flexi schooling actually is

Flexi schooling is a formal agreement between the school and the parent which allows part of the education to take place at home.
This can work well for children with Long Covid because it builds in rest days and pacing.https://learnwithoutlimitscic.blogspot.com/2025/12/flexi-schooling-in-wales-complete-guide.html


7. When Long Covid meets the definition of Additional Learning Needs

Under the Additional Learning Needs system, a child has ALN when they need support that is additional to or different from what is normally available.

Children with Long Covid often need:

• shorter school days
• supervised rest breaks
• adapted or chunked learning tasks
• reduced sensory load
• extra processing time
• planned rest periods
• home learning options
• coordinated support between health and education

7.1 What this means

Your child may be entitled to an Individual Development Plan known as an IDP.
An IDP can record the adjustments that your child needs in a clear legal document.

7.2 School IDPs and Local Authority IDPs

Some children will require a Local Authority IDP when the school cannot meet their needs alone.
This is often relevant for fluctuating or complex health conditions.

Internal link placeholder: How to request an IDP in Wales
Internal link placeholder: School versus LA IDPs


8. When education at school is not possible

Wales has a legal duty to provide suitable education for children who cannot attend school for medical reasons.

The Children Commissioner for Wales has raised concerns that some children receiving home tuition receive too few hours and that provision is not always suitable.
(See Source 5)

Education Other Than At School known as EOTAS can include home tuition, online learning or a blended arrangement.
The key point is that the education must meet the childs needs, not simply offer minimal contact.

Internal link placeholder: Understanding EOTAS in Wales


9. What comes next in Part 2

Part 2 will look at:

• paediatric Long Covid services
• mental health support
• how to request referrals
• what to do when systems are slow
• home tuition and hospital teaching
• social care rights
• how to request a child needs assessment
• template letters and ready made scripts
• a directory of trusted organisations

You deserve guidance that is calm, practical and rooted in Welsh law.
Part 2 will help you take confident steps forward.


Sources

  1. Public Health Wales. Long Covid surveillance data.

  2. Office for National Statistics. Coronavirus Infection Survey findings for children.

  3. Paediatric Long Covid meta analyses and symptom reviews.

  4. United Kingdom Covid Inquiry. Evidence pack on education and childrens social care.

  5. Children Commissioner for Wales. Education in Healthcare Settings Report.

Reduced Timetables in Wales: A Parent Guide

 

 Reduced Timetables in Wales: A Parent Guide

When a child is struggling to manage a full school day because of anxiety, medical needs, sensory overwhelm, chronic illness or unmet ALN needs, schools sometimes suggest a reduced timetable. This is sometimes described as a phased return and is meant to be short term and supportive.

But parents are rarely told the legal rules or what good practice looks like.
This guide explains your rights in Wales and offers practical steps to protect your child and ensure they continue to receive suitable education.


⭐ Linking This Guide with Flexi Schooling

A reduced timetable is not the same as flexi schooling. If you are exploring any of these options, see our full Flexi Schooling article here:

👉 Flexi Schooling in Wales: Parent Guide
https://learnwithoutlimitscic.blogspot.com/2025/12/flexi-schooling-in-wales-complete-guide.html


⭐ What Is a Reduced Timetable?

A reduced timetable means your child attends school for fewer hours or fewer days than expected for their age. This might be:

  • mornings only

  • arriving late or leaving early

  • specific subjects only

  • attending two or three days per week

A reduced timetable does not remove the school’s legal responsibility to provide education.


⭐ Is It Legal?

Yes — but only when:

  1. The parent has agreed

  2. It is short term

  3. There is a written plan

  4. It is in the child’s best interests

  5. The school reviews it frequently

  6. It is never used as a disciplinary measure

If these rules are not followed, the timetable may amount to an informal exclusion, which is unlawful.


⭐ Reduced Timetable vs Flexi Schooling vs EOTAS

✔ Reduced Timetable

  • school led

  • temporary

  • parent must agree

  • school remains responsible for educational provision

✔ Flexi Schooling

  • parent led

  • long term

  • requires headteacher approval

  • school is only responsible for on site learning

Full guide:
👉 Flexi Schooling in Wales: Parent Guide
[INSERT BLOGGER URL HERE]

✔ EOTAS

Education Other Than At School

  • arranged by the Local Authority

  • used when a school cannot meet needs

  • often linked to IDPs


⭐ When a Reduced Timetable Is Most Appropriate

⭐ 1. Medical Recovery or Chronic Illness

For example:

  • Long Covid

  • fatigue disorders

  • post viral symptoms

  • post surgery recovery

  • chronic pain

A reduced timetable may help build stamina without overwhelming the child.

⭐ 2. Anxiety or Emotionally Based School Avoidance

When the child is willing to attempt small steps but cannot manage a full day.

It should sit alongside:

  • counselling

  • graduated exposure

  • trauma informed support

  • CAMHS or GP involvement

⭐ 3. Sensory Overload or Autistic Burnout

For children who struggle with:

  • crowded corridors

  • transitions

  • noise levels

  • unpredictable routines

The timetable should be paired with sensory support, not replace it.

⭐ 4. A Planned Phased Return After Absence

This must include:

  • a clear start date

  • a clear end date

  • a step by step increase plan

  • review meetings


⭐ When a Reduced Timetable Is Not Appropriate

❌ 1. As a long term arrangement

Reduced timetables must be temporary.
If your child still cannot cope, the school must escalate support through the IDP process or request EOTAS.

❌ 2. As a behaviour management tool

If used to “send a child home early” due to behaviour, it is an informal exclusion, which is unlawful.

❌ 3. When the child is given no work

Schools must ensure learning continues during the hours your child is not attending.

❌ 4. When a child has unmet ALN needs

Reduced hours cannot replace:

  • assessments

  • intervention

  • ALN support

  • specialist input

❌ 5. When the plan is verbal only

Anything not written down tends to drift.
Parents must see a written plan.

❌ 6. When the reduced timetable masks a deeper concern

For example:

  • bullying

  • trauma

  • medical deterioration

  • school placement breakdown

These require proper assessment.


⭐ What a Proper Reduced Timetable Plan Should Include

A good plan must set out:

  • the reason the timetable is needed

  • the start date and end date

  • what support is in place

  • how school work will be provided

  • attendance coding

  • named staff contacts

  • review meeting dates

  • next steps if the child cannot increase attendance


⭐ Should the School Nurse Be Involved?

The school nursing team should be involved whenever a reduced timetable relates to the child’s health or medical needs. Schools cannot make clinical decisions about stamina, recovery or fitness for full time attendance without appropriate health input.

⭐ When Involvement Is Appropriate

School nurses should be involved when the reduced timetable is linked to:

  • Long Covid

  • chronic fatigue or post viral symptoms

  • ongoing pain or migraines

  • asthma or long term respiratory conditions

  • epilepsy or seizure recovery

  • diabetes management

  • recovery from surgery

  • unexplained illness requiring assessment

Nurses can advise on:

  • safe levels of attendance

  • phased return planning

  • medical evidence needed

  • referral routes to paediatrics, CAMHS or therapies

  • when medical needs tuition should be considered

⭐ When Involvement Is Essential

You should request school nurse involvement when:

  • a reduced timetable is suggested because of health but no clinician has assessed the child

  • the child cannot manage school due to fatigue or physical deterioration

  • the timetable is becoming long term

  • there is a possibility of needing home or hospital tuition

  • attendance is being challenged despite ongoing illness

⭐ When It May Not Be Required

If the reduced timetable is related solely to:

  • sensory overload

  • anxiety

  • emotionally based school avoidance

  • unmet ALN needs

then the ALNCo usually leads.
However, if distress presents with physical symptoms, nurses can still support onward referral.

⭐ How to Request Their Involvement

Parents can say:

“Because this reduced timetable relates to [health issue], I would like the school nursing team to be involved so that we can ensure the plan meets my child’s medical needs and follows appropriate clinical guidance.”

Schools cannot refuse a reasonable request for health involvement.


⭐ Attendance Coding

Schools should use:

  • C code for authorised absence

  • I code for illness when relevant

They must not:

  • use unauthorised absence codes

  • pressure you to deregister

  • use the timetable to artificially inflate attendance statistics


⭐ If It Is Not Working

Ask immediately for:

  • an IDP assessment or IDP review

  • a multi agency meeting

  • ALNCo involvement

  • medical needs tuition

  • consideration of EOTAS

Record everything in writing.


⭐ Template Letter: Request for Reduced Timetable Plan

Subject: Request for Reduced Timetable Plan and Review Framework

Dear [Headteacher / ALNCo],

I am writing to confirm our discussion about placing my child, [name], on a reduced timetable.

I am willing to consider this as a temporary supportive measure, provided that we have a written plan that includes:

  • the start and end dates

  • the reason for the timetable

  • the support being provided

  • how school work will be supplied

  • attendance coding

  • how progress will be monitored

  • the date of the next review

I also request confirmation that this reduced timetable is not an informal exclusion. If the timetable needs to continue beyond the review date, please arrange an IDP assessment or review so we can ensure that [name] receives appropriate support under the ALN Code for Wales.

Kind regards,
[Your Name]


⭐ Sources 

  • Welsh Government, Inclusion and Pupil Support Guidance 2016

  • Welsh Government, Education Other Than At School: Guidance 2023

  • ALN Code for Wales 2021

  • Attendance Codes Guidance (Wales)

  • Estyn reports on reduced timetables and informal exclusions

THE INVISIBLE WORKLOAD THAT SCHOOLS NEVER SEE

 

THE INVISIBLE WORKLOAD THAT SCHOOLS NEVER SEE


The Hidden Reality of ALN Parenting in Wales and Why It Deserves Recognition

Schools see a child for around six hours a day.
Parents see every hour before that and every hour after.

They see the morning anxiety, the exhaustion after school, the sensory overload, the masking, the meltdowns, the shutdowns, the scripts rehearsed at night, the rituals holding everything together, and the emotional cost that never makes it into a behaviour log or IDP review.

This is the invisible workload that shapes the daily reality of thousands of ALN families in Wales.

And it is enormous.


⭐ Schools See Behaviour. Parents See the Why.

Our November deep research confirmed the same pattern found in Welsh Government mental health studies, the Guardian’s recent report on anxiety and bullying, and from the lived experiences of our own community:

Children who cope at school often fall apart at home because they have been holding it together all day.

This is not a behaviour problem.
It is a stress and energy problem.

Teachers see a child trying their best.
Parents see the cost of that effort.


⭐ The Evening Shift: What Happens When School Ends

Once the school bell rings, the invisible workload begins.

Families manage:

  • the silent car journeys home

  • sensory overload

  • refusal to eat due to exhaustion

  • the shutdown or meltdown after masking all day

  • comforting a child who does not understand why they feel so distressed

  • helping siblings affected by their brother or sister’s needs

  • bedtime anxiety

  • homework battles

  • panic about group work

  • fear of PE

  • fear of being called on to speak

  • fear of bullying

  • stomach aches from tension

This work is continuous.

It does not appear on the school’s radar.
It is not written in a behaviour log.
It is not part of the IDP.

But it shapes every part of the child’s life and their ability to attend school at all.


⭐ The Cost of Living Crisis and the Extra Cost of Disability

Disabled families in Wales spend far more than non disabled families.
Our research aligns with Carers Wales, Scope and ONS findings.

Higher unavoidable costs include:

  • specialist foods

  • continence supplies

  • sensory suitable clothing

  • heating for pain management or temperature regulation

  • frequent laundry

  • taxi transport when public transport is not accessible

  • medical equipment

  • adapted bedding

  • home repairs

  • higher electricity needs

  • prescription replacements

  • travel to out of county hospitals

These are not luxuries.
They are essential.

And they create a financial burden that schools do not see.


⭐ The Overlooked Groups: Invisible Work Times Ten

Most ALN discussions in Wales focus on autism or ADHD.
But many disability groups carry heavy invisible workloads that receive almost no public attention.

We name them clearly here.


⭐ Visual Impairment Needs

Children with vision issues often need:

  • frequent replacement lenses

  • prism lenses

  • anti glare coatings

  • transitions lenses

  • specialist frames

  • recurring prescription updates as they grow

NHS vouchers cover only a fraction of the real cost.
Schools rarely see this burden or the visual fatigue these children bring home.


⭐ Hearing Loss and Auditory Processing Differences

Parents support:

  • hearing aid maintenance

  • frequent mould replacements

  • device repairs

  • listening fatigue

  • ENT appointments

  • teaching extended family how to communicate accessibly

  • creating quiet spaces at home

Listening fatigue is real.
Schools seldom see the exhaustion that follows.


⭐ Learning Disability and Global Developmental Delay

Families spend hours:

  • breaking down tasks

  • repeating skills

  • using visuals

  • teaching independence step by step

  • providing life skills practice

  • adapting routines

  • modifying homework

This labour is foundational and constant, yet invisible.


⭐ Communication Disability and AAC Users

Parents supporting AAC users must:

  • program vocabulary

  • model language daily

  • maintain communication boards

  • update software

  • teach extended family to use AAC

  • support transitions with visuals

AAC is not a device.
It is a language.

And parents are the language teachers.


⭐ Physical Disability and Home Adaptations

Parents supporting mobility needs manage:

  • manual handling

  • wheelchair repairs

  • continence routines

  • accessible routes

  • hoists

  • splints and braces

  • hospital transport

  • home adaptations often delayed for months or years

Even a simple outing requires a strategic plan.


⭐ Chronic Illness and Medical Fragility

Families supporting children with diabetes, epilepsy, asthma, sickle cell, gastrointestinal disorders, heart conditions and other chronic illnesses manage:

  • blood sugar monitoring

  • emergency medication

  • pain management

  • infection risks

  • consultant appointments

  • strict routines

  • night time checks

  • complex home care routines

This is life sustaining work.

And it is invisible to the school day.


⭐ Rare Diseases and Undiagnosed Conditions

Families with children who have rare or undiagnosed conditions often face the steepest road.

They must:

  • coordinate multiple clinics

  • track symptoms

  • educate professionals

  • push for referrals

  • manage uncertainty

  • navigate systems unfamiliar with their child’s condition

They often fall through gaps because they do not fit neatly into a diagnostic category.


⭐ Parents Do Not Want to Be Helpless Service Users

Parents do not want services to “fix” their child.
They want tools, clarity and partnership.

They want:

  • understanding

  • calm routines

  • reduced distress

  • scaffolding for independence

  • a clear pathway to adult life

  • systems that listen

  • professionals who believe them

  • environments that adapt

This is the social model of disability in action.

But in Wales, the social model is spoken about more than enacted.
Families end up filling the gaps with unpaid labour.


⭐ We Are Working on Future Releases of the ALN Parent Guide App to Include

We are not just naming this workload.
We are actively building tools to help families manage it with confidence and clarity.

Future releases of the ALN Parent Guide App will include:

✔ emotional load tracker
✔ parent wellbeing prompts
✔ home to school communication toolkit
✔ sensory and anxiety pattern mapping
✔ printable invisible workload summary for IDP reviews
✔ peer community support
✔ transition to adulthood toolkit
✔ modules for chronic illness, mobility needs, vision impairment, hearing loss and rare conditions

These tools will reduce the invisible workload and help families advocate with clarity and confidence.


⭐ Conclusion

The invisible workload is real.
It is physical.
It is emotional.
It is medical.
It is financial.
It is exhausting.

Families deserve understanding.
Schools deserve a fuller picture.
And young people deserve systems that see the whole of their needs, not just the classroom version.

Learn Without Limits CIC will keep naming the truth and building tools that lighten the load.
No parent should carry this alone.