PA0092

Written evidence submitted by Long Covid Kids

Introduction and Reason for Submitting Evidence

Long Covid Kids (LCK) was founded in July 2020 by Sammie McFarland to provide grassroots support and connection for families, children and young people living with Long Covid. In 2021 LCK became the first UK-based, international  charity for children living with Long Covid. The charity's mission focuses on awareness, support, research and action and is recognised by the NHS, the Centre for Disease Control in the USA, and the British Heart Foundation, alongside other partner organisations. Please see our first Annual Review (2021-2022) for more information.

The charity is the only international organisation supporting and representing children living with Long Covid, and advocating for recognition, support and research into Long Covid in children and young people. The latest ONS Survey (released February, relating to December 2022) revealed that there are 58,000 CYP with Long Covid across the UK (i.e. who have had symptoms persisting for at least 4 weeks after the acute phase of the Covid-19 infection has passed).  More worryingly, 40,000 of those have been ill for at least 12 months. 

The reality is that we have many CYP using our support services who have been chronically unwell for nearly 3 years. Many of these children tell us that they are unable to attend school full time or to attend at all. Many of them are unable to access alternative provision. We will be releasing an Educational Experiences Survey within the next few weeks with researchers from the University of Derby which will provide us with quantitative data on how many children are unable to access a full education and the impact this is having on them Our Unhappily Ever After

Question 1. The factors causing persistent and severe absence: symptoms and the ability of CYP to attend school in person

The Center for Disease Control and Prevention (CDC) reports that the most common symptoms of Long Covid in children are:

●      Extreme tiredness

●      Dizziness

●      Rashes

●      Brain fog

●      Headaches

●      Chest pain

●      Stomach pain or upset

●      Sore throat

●      Mood changes

●      Muscle and joint pain or swelling

●      Sickness or nausea

Research tells us that approximately 47% of CYP with Long Covid suffer from extreme exhaustion (chronic fatigue), 43% have shortness of breath (dyspnea) and 35% suffer with persistent headaches.[1]  Long Covid is multi-system illness of a vascular nature. The symptoms can vary by individual and can affect any system within the body, e.g cardiovascular, digestive, nervous system, respiratory and muscular-skeletal and can cause an incredibly wide range of debilitating symptoms.

Children can also go onto develop conditions such as Postural Tachycardia Syndrome (PoTS), Paediatric Acute-onset Neuropsychiatric Syndrome, or Paediatric Autoimmune Neuropsychiatric Disorder associated with streptococcal infections (PANs/ PANDAs), Paediatric Inflammatory Multisystem Syndrome (PIMS-Ts), Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) or Mast Cell Activation Syndrome (MCAS) as a result of Long Covid.

Symptoms of Long Covid can develop weeks or months after the initial infection and symptom duration is unclear. Some children and young people are still feeling ill since their Covid-19 infection at the beginning of the pandemic in early 2020. Symptoms can be continuous or come and go in the form of relapse and remittance meaning that some children have “good” days and “bad” days and can lead to irregular patterns of attendance.

Living with Long Covid can significantly impact on the ability of CYP to engage with and participate in education in any meaningful way.

Children and young people were asked via their parents on the LCK support group to describe their Long Covid in one word. Children and young people living with long Covid said that they feel ill, sad, hurt, lonely, dizzy and that they are in pain. They describe how it is “draining, exhausting, scary, horrible and never-ending”. Please see the blog ‘Exhausting & Painful'. Children & Young People Describe Their Long Covid (longcovidkids.org) for further children’s views.

The following table illustrates some of the difficulties children with Long Covid might face in school, which can affect their attendance:

Living with Long Covid can mean for some that even the effort required to get up and get dressed into school uniform can cause complete exhaustion and render them unable to do much else for the remainder of that day, or for longer.  Many also suffer from post-exertional symptom exacerbation (PESE), which is also commonly known as PEM (post-exertional malaise).  PESE is when physical, cognitive or emotional effort make the sufferer’s symptoms considerably worse (i.e., increase in fatigue, migraine, muscle/ joint pain, cognitive dysfunction and so on) and may lead to what is known as a crash.[2]  In a crash state CYP with Long Covid can become literally unable to function at the most basic level.  They may become almost completely bedbound, and may be unable to tolerate any light, noise or other external stimulation.

As the Committee will be able to easily ascertain, the combination of debilitating symptoms with PESE can make getting to school and participating in lessons extremely difficult.  In addition, CYP have to confront several barriers including:

●        Long Covid is poorly understood, some children report that their symptoms are minimised or dismissed as anxiety

●        There is no effective treatment and access to care/support from health services can be inconsistent LONG COVID KIDS Charity Reveals Ongoing and Increasing Healthcare Issues for the UK’s Next Generation | Science Times

●        Alongside the physical challenges, the uncertainty of the child's future recovery can have an additional  impact upon mental health

Disadvantaged pupils

There is considerable evidence showing that BAME people are over-represented in those severely unwell following contact with SARS-CoV-2; they died in larger numbers; they are less likely to have been fully vaccinated (which seems to confer some limited protection from Long Covid) and those children growing up in households where the adults are in insecure, typically service-sector jobs, are more likely to have been exposed to infection as they were often (low paid) key workers during the national lockdowns.

Clinical vulnerability to Covid-19

The call for evidence asks about clinical vulnerability.  There are two distinct dimensions to this:

●        There is evidence that Covid-19 infection causes dysfunction in the immune system.[3]  This means that even a seemingly mild infection can make those who have had Covid-19 (which is most of the school population) susceptible to further infection.

●        No-one knows who is vulnerable to developing Long Covid (Global prevalence estimates of Long Covid in children vary from 1:4 to 1:100 depending on cohort, methodology, and definition[4]) but we know from experience that it can be life changing and long-term.

Question 2: How schools and families can be better supported to improve attendance, and how this affects pupils and families who are clinically vulnerable to covid-19.

●        Clean the Air in Schools

Long Covid is a preventable condition and is airborne.[5] Airborne transmission is preventable through ventilation, filtration and sterilisation. Read our blog here Clean The Air We Share|Public Space Ventilation Bill Now (longcovidkids.org).

In every public space, especially vulnerable communities and high-risk environments such as schools, health and social care settings, we urgently need:

●  Visible CO2 monitors

●  A regulated max CO2 level of 800ppm

●  Immediate upgrading of ventilation and air filtration

●  Government ventilation grants for indoor public spaces

●  An open access online monitoring system with a RAG (Red, Amber, Green) score

This would have the benefit of ‘turning off the tap’ of new Covid-19 infections, and thereby eventually reducing the numbers that develop Long Covid.  It would secondly reduce the risk of CYP unknowingly picking up SARS-CoV-2 at school or in other settings, and bringing the virus back to CEV family members in the home.

●        Support to Children, Schools and Families

Long Covid Kids has information on its website specifically for schools, has produced a Support Guide and collated  resources  to help children, young people, schools and families understand and support pupils with this complex condition so that they can engage with their education, for example:

Source: Shining A Light On Long Covid In Children & Young People (2022) A guide to recognition, support and recovery. (registration required, but we are happy to make hard copies available to the Committee if necessary)

This support Guide has sections on how schools can make a graduated approach and reasonable adjustments; areas of need and things to consider; what teachers and other staff need to know; goal setting; mitigating risk; an extensive Q&A; and templates for letters and record keeping. Further support is available on the website in the Support for Schools section..

The collated resources in our padlet for schools and education professionals contains a huge amount of material to inform and equip educational settings to recognise and understand Long Covid in CYP and the syndromes that are associated with it.

The following articles also outline the impact on Long Covid in the classroom and how they can be supported to engage and participate in their learning Exhausting, painful, lonely: The impact of Long Covid on children (sec-ed.co.uk) and How can we support pupils who have Long Covid? (sec-ed.co.uk).

In terms of attendance, some children may be too unwell to attend school straight after a covid infection. The following resources can help parents and school staff ascertain that they are well enough to attend school: A Cautious Tortoise and Pacing Penguins.

Schools should follow a graduated approach to supporting children in school and Supporting pupils at school with medical conditions (publishing.service.gov.uk). The key points of which are:

●        Pupils at school with medical conditions should be properly supported so that they have full access to education, including school trips and physical education.

●        Governing bodies must ensure that arrangements are in place in schools to support pupils at school with medical conditions.

●          Governing bodies should ensure that school leaders consult health and social care professionals, pupils and parents to ensure that the needs of children with medical conditions are properly understood and effectively supported.

The following may need to be considered in order to aid recovery and maximise attendance:

●        A phased return, a reduced timetable and time to attend medical appointments

●        Access to remote lessons from home, including the use of AV1 robots

●        Home tutoring or catch up tutoring

●        Increased flexibility around homework, tests and/or exams

●        Access arrangements, e.g. extra time and rest breaks in exams

●        Opportunities for rest and pacing during the day

●        A quiet place to go at lunch and breaktime

●        An exit card to leave the classroom if feeling unwell

●        Increased differentiation or non-attendance during PE lessons

●        A keyworker such as an Emotional Literacy Support Assistant (ELSA), Emotional Mental Heath Practitioner, Thrive practitioner or equivalent to support mental health resulting from Long Covid

●        Additional opportunities for social interactions with peers or check-ins from staff

●        An Individual Healthcare Plan

●        Education Health and Care Plan

NB: Strategies employed for Emotionally Based School Non-Attendance should not be employed as there is not an emotional basis for reduced or non-attendance. When asked what they would most like to return to once well, many children with Long Covid reply ‘school’.

In addition, we are happy to provide an expert panel available to give evidence to the Committee in person if this would be helpful.

We hope that this provides you with the evidence you need that Long Cvvid is impacting on children’s ability to engage with and attend school and suggest that unless there is a significant shift in the way schools think about attendance for those with chronic illnesses, this will be an ongoing problem in the UK and CYP will continue to miss out on the education that they are entitled to and deserve.

February 2023

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