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Long Covid Kids / longcovidkids@bsky.social

@LongCovidKids

Apr 1, 2022 • 9 tweets • 14 min read • Read on X

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Jacob is 11 years old & has been unwell since March 21. 2 weeks after #covid19 infection he lost mobility in his legs & required mobility aids alongside physiotherapy twice a wk ever since.

Jacob wants more support for families living with #LongCovidKids

#ShineALightOnLongCovid

Emily is 9yrs old, she contracted Covid in Sep21. She was admitted to hospital for 13dys in Nov due to severity of her #LongCovidKids symptoms.She now uses a walker as has severe pain in her back & legs.

Emily would like more funding for LC services

#ShineALightOnLongCovid

Anna is 9yrs old & has had #LongCovidKids for 2yrs.
She uses a wheelchair as has severe pain in her legs when she tries to walk. She feels people are pretending Covid is gone.

Anna is asking the PM and Scottish government to help children like her.

#ShineALightOnLongCovid

Jasmine is 11 yrs old & has had #LongCovidKids since Jan21.
She misses dance, gymnastics & karate.Jasmine uses a wheelchair as she can't walk long distance.
Jasmine is asking for schools to be made safer for children so that Covid transmission is reduced
#ShineALightOnLongCovid

Liliana is 17yrs old. she's been living with #LongCovid since Sep 2020. Liliana's concerned about the way that children & parents are being treated by some doctors who don't understand LC/don't believe it effects children.
She asks that the PM listen!

#ShineALightOnLongCovid

Kitty,16yrs old, had Covid in March 2020. She improved after a few wks but after another month developed #LongCovid. For 5 mths she required help to eat & drink & to use the bathroom. LC has taken a huge toll on her mental health. She is calling on the PM to make tests free again

Eva (Aged 14) has #LongCovidKids following asymptomatic infection. She's concerned that some doctors don't understand & are telling children that they are just anxious or depressed. Eva is calling for more research to find the cause of LC and treatments.
#ShineALightOnLongCovid

@BinitaKane

#LCFamily
#LongCovid #COVID #CovidIsNotOver
@BinitaKane @MichaelRosenYes @HouseofCommons @DrRanj @LongCOVIDPhysio @NHSLeader @BorisJohnson #pwLC @dgurdasani1 @Dr2NisreenAlwan @doctorasadkhan @BBCMorningLive @GMB @cv_cev @surf4children @CMO_England @gezmedinger @ClaireHastie1

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More from @LongCovidKids

Long Covid Kids / longcovidkids@bsky.social

@LongCovidKids

Oct 23

LCK Closing Subs @covidinquiryuk
Sarah Hannett KC

"failures constitute an ongoing breach of the government's duty to place the best interest of children at the heart of their decision making and to respect the human rights of those children & their families"

#ChildrensRights

4 Points.
1st - The ongoing impact on our clients and their families.
"Our clients' children did not "bounce back" after their COVID infection or reinfection, rather COVID infection led to #PIMS or developed into #LongCovid leading to serious ill heath and disability"
#Children

2nd

"at no point (then or since) has any governmental body warned parents, children or schools about the existence of & risks of #LongCovid - the silence constitutes a public health failure" Cases rising rapidly were accepted as strategic risk.

#ChildrensRights

Read 12 tweets

Long Covid Kids / longcovidkids@bsky.social

@LongCovidKids

Oct 9

🧵Understanding How the @covidinquiryuk Handles Questions

We know that many of you are feeling frustrated that some of the key questions we hoped would be asked in the Covid Inquiry haven’t yet been put to witnesses. We completely understand and we share that frustration.
We

wanted to explain a bit about how the Inquiry process works, so it’s clearer why this is happening and what we’re doing about it.
The Inquiry is a statutory process, which means it operates under strict legal rules. The questioning of witnesses is led by Counsel to the Inquiry

(the Inquiry’s own legal team), under the direction of the Chair, Baroness Hallett. This means that neither core participants nor members of the public can directly ask questions during the hearings unless granted permission.

Read 10 tweets

Long Covid Kids / longcovidkids@bsky.social

@LongCovidKids

Mar 17

🚨 New: Long Covid services are failing patients.

📊 A joint report from @long_covid & @LongCovidKids reveals:
🛑 Clinics are closing.
🛑 Care is inconsistent & often falling short of NHS commissioning guidelines.

Action NOW!

#LongCovid #ClosingClinics bit.ly/3FBNMva

🔹 01 - Over half of adults & children with #LongCovid told us they consider themselves #disabled.
Yet services are closing, & care is inconsistent. Long Covid must be recognised as a serious, disabling condition.
🔗
#ClosingClinics bit.ly/3FBNMva

🔹 02 - 61% of children & 28% of adults told us they didn’t know Long Covid services existed.
How can people access care if they don’t know it’s available?
📢 We need awareness & proper investment.
Read the report:
🔗

#LongCovid #ClosingClinics bit.ly/3FBNMva

Read 12 tweets

Long Covid Kids / longcovidkids@bsky.social

@LongCovidKids

Jan 22

‘Compared with the pre-COVID condition, the COVID group had greater severity of inattention, somatic complaints, thought problems, internalizing problems, poor school functions, and interaction problems with their parents in the post-COVID condition’

#LongCovid #LongCovidKids

84 children aged 6–16 received assessments within 6 mths after being tested + for 🦠

Parents reported observations 3 months before infection & the most recent 2 wks (post-COVID condition) on a wide range of psychopathologies & social functional impairments

#LongCovidKids

Preventing infection in children should be high priority.

Please share this study with those who have the power to protect all children.

@GwynneMP
@wesstreeting
@bphillipsonMP
@educationgovuk

#LongCovidKids #LongCovid #CleanAir #Education

sciencedirect.com/science/articl…

Read 4 tweets

Long Covid Kids / longcovidkids@bsky.social

@LongCovidKids

Nov 27, 2024

Closing statement from Sarah Hannett KC on Children and Young People 27/11/24.

"Long Covid is a new childhood disease whose prevalence is equivalent to childhood diabetes"

#LongCovid #LongCovidKids #CovidInquiry

One teenager told Every Story Matters that "it's a big identity crisis, my Mum and I were fit active people, I was meant to be beginning pro ballet as a career"
"at a young age difficult a you are finding out who you are, it's an identity I don't want"

#LongCovidKids #LongCovid

"In the UK throughout 2020 there was no information published by @GOVUK stating that children & young people could have any, let alone debilitating symptoms from COVID/LongCovid"
"When families sought assistance for children suffering they were routinely dismissed"
@SammieFMc

Read 9 tweets

Long Covid Kids / longcovidkids@bsky.social

@LongCovidKids

Sep 6, 2024

🧵 Module 8 Prelim Hearing @covidinquiryuk @LongCovidKids @LCKScotland
CYP with #LongCovid suffered the double burden of the direct effect of their illness and disability as well as the indirect effects of the pandemic & it's associated measures felt by all CYP
Sarah Hannett KC

Some CYP have lost their lives to COVID-19, many continue to suffer from the life changing, disabling symptoms of #LongCovid

Patients & their families suffer the additional burden & stigma of being disbelieved and disparaged or having symptoms minimised or dismissed as anxiety

We agree with the observations made by the CRO that the Pandemic, & we would add #LongCovid, exacerbated and continues to worsen existing inequalities amongst CYP in terms of, for example social economic status, ethnicity & disability
#LongCovidKids