Long Covid Kids: the road so far

LONG COVID KIDS WAS ESTABLISHED IN 2021 TO RESPOND TO THE URGENT NEED OF SUPPORT FOR FAMILIES AND CHILDREN FACING THIS NEW PHENOMENON – AND FEELINGS OF ISOLATION AND A LACK OF UNDERSTANDING. HERE, SAMMIE MCFARLAND TELLS US ABOUT THE ORGANISATION.

First, it was said “children don’t get Covid-19.” Then, “they don’t transmit it.” Shortly after this it was understood “they don’t get seriously ill’’ or “they rarely get long Covid.” Unfortunately, children are affected by all of these things. We now understand that long Covid is a vascular condition and can affect any part of the body, while much-needed research is ongoing. Unprecedented levels of Covid infection in children caused a 52% increase in long Covid in November 2021, and the December figures remained at the same high level.

The Office of National Statistics reported (published 4th Feb 2022) that 20,000 children have been ill for over a year and 117,000 for at least four weeks. In addition, nearly 3,800 children were recorded as Covid hospital admissions in January, with a further 1,125 already in February (as at 13th Feb), the eighth month of over 1,000 admissions in a row.

The numbers of hospitalised children that go on to develop long Covid are unknown. Research reports have suggested that between 2% and 10% of Covid infections may suffer ongoing symptoms. In 2021 Long Covid Kids became the first UK-based, international charity for families, children and young people living with long Covid.

The charity focuses on awareness, support, research and action and has already received recognition from the NHS and and the Centre for Disease

Control in the USA, as well as being a recommended public resource in the new NICE long Covid guidelines. Long Covid Kids started as a grassroots organisation run by people living with long Covid. It began with a short film aimed at raising awareness of the long-lasting symptoms of Covid in children. It continues to organically evolve to accommodate growing demand with a tireless campaign for recognition, support. and recovery. Beloved children’s author Michael

Rosen is the perfect patron for us. Having lived through a turbulent hospital stay himself, and currently living with long Covid, he is a compelling advocate for those children and young people also living with long Covid.

WHAT IS LONG COVID?

Long Covid is the term given to the ongoing signs and symptoms caused by SARS-CoV-2 infection that remain unresolved for 4 weeks or longer.

The term ‘long Covid’ was coined by patients who challenged the early Covid guidelines that stated people recovered from mild cases within two weeks. It known by other names internationally, such as PostCovid-19 and Post-Acute Sequelae of SARS-CoV-2 Infection (PASC). Long Covid was first recognised by patients at the beginning of the pandemic when they noticed that symptoms such as pneumonia and chilblain like sores which were not resolving with time. This history has been peer-reviewed and published.

WHAT ARE THE SIGNS OF LONG COVID IN CHILDREN?

The signs and symptoms in children and young people are numerous. They are often fluctuating in nature and can appear after a delayed onset. Symptoms more often appear in constellations but can appear in isolation. For all these reasons, diagnosis can be challenging, and especially so for those who were untested during the acute infection. Symptoms range from fatigue and brain fog to breathlessness, unusual and fast heart rates and rashes, to loss of mobility, insomnia, anosmia, organ damage and acute onset neuropsychiatric symptoms consistent with Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS). Covid-19 is not always a benign illness in children and as yet we can’t accurately predict who will experience long Covid.

CASE STUDIES KITTY AND SAMMIE

Sammie and her now 16-year-old daughter Kitty caught Covid-19 in the first wave of March 2020 when patients were unable to access hospital care unless conditions were life-threatening. Predominantly unable to get out of bed for eight months, they struggled on their own to wash, dress and perform basic tasks. Sammie’s husband became their carer. A year and a half on, Kitty’s school attendance has dropped to 47%. She attends part of each day depending on energy levels and is understandably anxious about how much impact this will have on taking GSCEs next year. In the first year following infection, Kitty’s main symptoms were heart palpitations, insomnia, dizziness,

weakness, muscle twitches, temperature dysregulation, fatigue, brain fog and undiagnosed abdominal pain. 23 months on, Kitty has a clinical diagnosis of long Covid. The fatigue, brain fog and abdominal pain impact everyday life and Kitty has not been able to return to her usual activities. Day to day involves managing symptoms, pacing, exercise-based therapy and nutritional intervention. The combination of daily pain, ongoing symptom management and the change in circumstances, combined with little medical support and minimisation in the media, has had a significant knock-on effect on her emotional wellbeing. Kitty is unable to attend school on a regular basis and now has a home tutor to support her in the lead up to her exams.

ANNA AND HELEN

Helen’s daughter Anna was also infected with Covid in the first wave and is now nine years old. Anna was previously a happy, energetic little girl who loved ponies. Like Kitty, she had no underlying health conditions. Since contracting Covid-19 Anna has become verbally and physically aggressive and refuses to eat certain foods or get in the bath. Anna has finally been given diagnoses of long Covid and Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) triggered by Covid infection. Both of these diagnoses are complex in their presentation.

Helen has had to become a strong advocate for her daughter while managing her own long Covid, and like Sammie has had frustrating healthcare experiences. She continues to face disbelief about her daughter’s mental health challenges, fuelled by the media narrative that children’s mental health issues have been caused by lockdown. As a result of this disbelief, Helen turned to a private healthcare provider to procure the medication Anna needed to help stabilise her health.

Anna has since had a second Covid infection, and due to pain and weakness in her legs, now requires the use of a wheelchair and physiotherapy treatment.

HOW WE ARE ADDRESSING THE PROBLEM

While delivering Long Covid Kids’ services, the organisation has identified that one of the main challenges for families is being told that long Covid is new, and that professionals don’t know how to help yet. The lack of adequate resources is often a barrier to ongoing care and support, with parents often stuck in medical isolation. In desperation, they often turn to the internet. As with any illness, the information found online varies in accuracy and validity. This is where Long Covid Kids can support and guide. Our team of volunteers are ‘experts by experience’ and offer support to families, signposting to credible resources and services, as well as sharing a broad range of experiences and what they have found helpful. The small Long Covid Kids team has worked tirelessly throughout the pandemic to make sure children have a voice. Being forthright despite their

own illnesses and life challenges in negotiating with those setting up NHS services, they have fought to co-produce and disseminate quality research, and providing comment on the many reports which we feel are misrepresentative. Importantly the team speak up for all the families and children who feel dismissed. Many of these people feel silenced and even gaslighted as their experiences are seen to be at odds with what is currently empirically understood. Covid-19 remains a challenging phenomenon, and long Covid in particular is difficult to assess and measure. This has led to suggestions from some quarters that long Covid is a purely a mental health issue. Long Covid Kids has a wide breadth of understanding having observed members of the support group, now seven thousand strong. We have also listened to existing communities living with chronic health and have always advocated for a cautious approach to recovery. “Cautious Tortoise” is an easy to follow flow chart that embodies all that we have learnt, and was developed by Long Covid Kids founder Sammie McFarland and occupational therapist Kirsty Stanley to provide a much-needed framework to guide families in their approach towards recovery. It has been well received and is supported by Long Covid Physio, an international peer support, education and advocacy, patientled association of Physiotherapists (Physical Therapists) living with Long Covid and allies. The Long Covid Kids team actively supports schools to help children access education alongside managing their health needs. Having worked to ensure long Covid is acknowledged and accepted in children, the team recently released the Pacing Penguins resource, comprising a poster to support children and young people to recognise how to manage their ongoing symptoms day to day through pacing. The next challenge the team faces is fundraising. We know how to support this growing community of children, young people and families but we need the funds to achieve it. Sadly, due to the toll that the pandemic has had on our public services, there is an ongoing shortage of volunteers, energy, expertise and funds. Long Covid Kids has achieved such a lot in the past 18 months. Since becoming a charity we hope to be able to secure funding to extend our services. Due to the ongoing pandemic and unprecedented level of infection in children, we sadly anticipate a tsunami of new members requiring support and signposting.

http://www.longcovidkids.org