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Long Covid in Children and Young People Dr Sue Peters Educational PsychologistAims for This Session • Prevalence and symptoms in children • Personal experience of Long Covid • Children’s views of Long Covid • Support to return to school and support in school • Long Covid Kids charity and support for CYP, families and professionals. Resources and referencesWhat Is Long Covid? Prevalence and Symptoms in ChildrenHow Many Children and Young People Have Long Covid? Does it Affect More Females or Males? Prevalence of Ongoing Symptoms, COVID-19 Schools Infection Survey, ONS. Apr 2022: ONS. March 2022: • 115, 000 CYP are now living with Long • Nearly 1 in 50 (1.8%) primary (yR-6) Covid symptoms • Nearly 1 in 20 (4.8%) secondary (y7- • 90,000 CYP have Long Covid 13) children reported experiencing LC symptoms for at least 3 months since their most recent infection (48 in • 26,000 CYP are suffering Long Covid a school of 1000) symptoms beyond 12 months. Up by 3,000 in a month Fair Health White Paper. May 2022: • 16,000 have their activity ‘limited a lot’ • More females (60%+) than males in all age groups 13-50y • In 0-12y, males (50.5%) to females (49.5%)Symptoms in Children • Extreme tiredness • Dizziness Children can also go onto develop other conditions as a • Rashes result of Long Covid • Brain fog • Postural Tachycardia Syndrome (PoTS) • Headaches • Paediatric Acute-onsetIm g a eaiatric Syndrome or • Chest pain Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections (PANS/ • Stomach pain or upset PANDAS) • Sore throat • Paediatric Inflammatory Multisystem Syndrome (PIMS-TS) • Mood changes • Myalgic Encephalomyelitis /Chronic Fatigue • Muscle and joint pain or swelling Syndrome (ME/ CFS) • Sickness or nausea (CDC)What Does Long Covid Look Like in Children and Young People? • Symptoms vary by individual • Symptoms can continue on from the initial infection or can develop weeks or months afterwards Image area • Symptoms can be continuous or can come and go • Duration of symptoms is unclear; some are still ill since infection at the beginning of the pandemic in early 2020 • POTs, PANS/PANDAS, PIMS, ME/CFS, MCASWhy is This Important? What Does This Mean for Children and Young People and Their Families? • CYP and their families are facing unexpected, long-term debilitating health challenges which can impact upon their ability to access their education and to take part in daily activities • Access to health care is variable. Many families experience minimising of symptoms, gaslighting or a lack of knowledge that Long Covid can affect children • There are no treatments for Long Covid. Clinics are supporting children to ‘live with’ and manage their symptoms • Alongside the physical challenges, the uncertainty of the child's future recovery can have an impact upon mental health • Many families report a lack of understanding from schools as they are directed to focus on attendancePersonal Experience of Long Covid My Family’s StoryLong Covid and My Family Prior to Covid: Eva, aged 14. Played squash for Surrey, taking part in national championships. She competed in athletic events for Surrey – sprinting and long jump and played football for a team. She trained 6 days a week. Very fit and healthy, no underlying health conditions.Covid-19 Infection Acute Covid Post Covid • Whole family contracted • Eva’s symptoms continued and new symptoms Covid-19 in January 2021 began to emerge: tight chest, heart palpitations, • None of us needed a hospital tachycardia, dizziness, extreme fatigue stay • GP sent us to A&E in early Feb. Sent home: • Before any of us were ‘probably just anxious’ about lockdown vaccinated • GP sent us to A&E in mid Feb, admitted to a children’s ward for further tests • Headaches, fever, chills, muscle aches, cough, • Diagnosed Long Covid, ME/ CFS, autonomic breathlessness, fatigue dysfunction and chronic daily migraines • 18 months on – tight chest, heart palpitations, HR increases by 50-60 BPM when she is upright, raised temperature every day, dizziness, muscle pain and extreme fatigue. Only treatments so far are ACT, activity management, vitamins/ supplementsAccess to Healthcare and Ongoing Treatment • Long wait to see a Paediatrician/ NHS Cardiologist, frequently cancelled appointments, 3 different paediatricians in 3 different appointments • Physiotherapist for pacing and activity management • 11 month wait for Paediatric Long Covid Clinic. Multidisciplinary, focus on managing symptoms. One off. No process for review. Referrals to clinical psychologist for ACT and dietician • Private Paediatric Cardiologist - autonomic dysfunction as a result of her covid infection. Trialled a range of medication– no impact on symptoms, referred to adult cardiologist for second opinion. Private referrals to a respiratory consultant, neurologist, haematologist etc. Lots of tests and investigationsImpact Upon Daily Life and Family Impact on daily life Huge impact on quality of life, now unrecognisable: • Reduced timetable at school, driven there and back • Some days she is physically unable to attend school, attendance currently less than 70% Image area • Sleeps for 2-3 hours when she gets home from school • Missing out on trips/ activities: DofE, geography field trip • Missing out on seeing friends, social activities • Not been able to return to her previous level of sporting activity; she can barely walk up the stairs or to the end of our road • Impact on siblings, holidays, family activitiesHow Do Children and Young People Describe Their Long Covid?How Do Children and Young People Describe Long Covid? Children and Young People need: • To be listened to and believed • Understanding • To be consulted on what will help them • To be supported to be able to access their education, to engage with learning, to interact and socialise with their friends and with their mental health and emotional wellbeing https://www.longcovidkids.org/post/exhausting- painful-never-ending-lonely-children-young- people-describe-their-long-covidSupport to Return to School and Support in SchoolSupporting Children as They Return to School • An initial focus on wellbeing over attendance • ‘Pushing through' is ill-advised, and may prolong recovery time in some children • Pacing and energy preservation are recommended by OTs and Physios • cautious-tortoise • pacing-penguinsSupport in School • There is not a one-size-fits-all approach to supporting children and young people in the classroom, so a flexible, individualised approach will be needed • Need to consider access to education and inclusion • Need to consider impact of symptoms on learning, homework, exams and missed learning • Need to consider impact of symptoms on wellbeing (anxiety, isolation, self-esteem, belonging, friendships) • https://www.longcovidkids.org/support-guideDifficulties Children Might Have in the Classroom • Communication and Interaction • Social, Emotional and Mental Health • Difficulties expressing themselves • Anxiety caused by the duration/ severity and finding words when they are of symptoms, lack of understanding of feeling fatigued, have brain fog, LC, missed school/ socialising don’t understand or are feeling • Social isolation and a lack of school anxious belonging • Cognition and Learning • Loss of identity and changes to sense of • Fatigue, difficulties with self concentration, memory, brain fog • Sensory and Physical and headaches • Sensitivities to noise, light. Vision • Gaps in learning, due to missed difficulties. Distortions of smell/taste school, reduced attendance or • Physical symptoms, e.g. chest pain, regression in skills palpitations, joint/ muscle pain, dizziness, nausea, headaches, fevers, stomach/ gastro difficultiesHow You Can Support Children and Young People With Long Covid • Listen and believe children, young people and their families. • Consider the impact upon all aspects of daily life and the family including siblings. • Seek the views of children and young people; ask them what would help them and how they would like to be supported. • Consider that the CYP’s focus may need to be on getting better and wellbeing and that this may need to take priority over attendance and learning for a while. • Liaise with any involved education professionals and discuss the impact of Long Covid on the child’s access to education, inclusion, learning and wellbeingLong Covid Kids Resources and ReferencesLong Covid Kids Charity • In 2021 Long Covid Kids (LCK) became the first UK-based, international registered charity advocating for and supporting families, children and young people living with Long Covid. • The charity focuses on recognition, support and recovery • Received recognition from the NHS and the US Centre for Disease Control (CDC), as well as being a recommended resource in the new NICE Long Covid guidelines.Long Covid Kids Resources Website Padlets Support Services https://www.longcovidkids Five padlets with useful .org/ links to articles, resources and information for: • Children • Young People • Families • Schools and Education Blogs Professionals https://www.longcovidkids • Health and Social Care .org/long-covid-kids-blog ProfessionalsLong Covid Kids Support Guide: "Shining a light on Long Covid in Children. A Guide to Recognition. Support. Recovery." • Created by parents and professionals whose children are living with Long Covid (including Educational Psychology and Occupational Therapy input), the Support Guide is a comprehensive pack containing evidence-based resources and information for parents, families, children, young people, school staff, education, health and social care professionals. • Free to download from www.longcovidkids.orgReferences The Impact of Long Covid on Children - Sec LCK Support Guide: "Shining a light on Long Covid in Children. A Guide to Recognition. Ed and Headteacher Update: Support. Recovery." https://www.longcovidkids.org/support-guide Exhausting, painful, lonely: The impact of Long Covid on children (sec-ed.co.uk) Children and Young People Describe Their Exhausting, painful, lonely: The impact of Long Long Covid - LCK Blog: Covid on children (headteacher-update.com) https://www.longcovidkids.org/post/exhausting- How Can We Support Pupils Who Have Long painful-never-ending-lonely-children-young-people- Covid? – Sec Ed and Headteacher Update: describe-their-long-covid How can we support pupils who have Long Covid? (sec-ed.co.uk) How can we support pupils who have Long Covid? (headteacher-update.com) info@longcovidkids.org @LongCovidKids speters@longcovidkids.org @suepeters21