🚨 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

‘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

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

🧵 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

Listen to Long Covid Groups closing submission delivered by KC Anthony Metzer. 12/12/23
My Lady, I appear with Sangeetha Ienger and Shanthi Sivakumaran
Instructed by Jane Ryan of Bhatt Murphy
@Jane_Ryan_ @BhattMurphy @covidinquiryuk
#LongCovid #LongCovidKids #CovidInquiry You heard from our client @SammieFMc during the impact films. In her statement, she said: “it has been extremely distressing to watch my child who had been previously completely healthy, happy and dancing around being unable to move and full of self-doubt. It was like watching

Three years ago while #LongCovid was being denied and ignored, despite available evidence @LongCovidKids families came together to make this made this awareness video advocating for CYP injured by #COVID.
3 years on, children are still sick.
#LongCovidRuinsLives #LongCovidKids Listening to the witnesses at the @covidinquiryuk today has been extremely difficult, upsetting and traumatic for families.
We are distraught that the experiences of our children who both endured the pandemic and were injured by the virus, are not being heard. The inquiry

1/3 These are the words children use to describe their #LongCovid experience.
Friday is #LongCovid day at @covidinquiryuk
@LongCovidSOS Co-founder @selkieO
will give evidence on behalf of the Long Covid Groups.

We can't do this alone, we need your support.
#StrongerTogether 2/3 Their words remind us why we are part of the @covidinquiryuk
Join Us.
✅0915> @ Dorland House, 121 Westbourne Terrace London, W2 6BU
✅0800> online to support as we ask the @covidinquiryuk to #listen, #learn & give children & families #Hope

#ListenLearnHope
#GiveUsHope

“These figures are extremely concerning. Children rarely get ill, so a disease affecting 2% of young children to a level that it’s causing restriction of day-to-day activity is a huge public health problem.”
@dgurdasani1

#LongCovidKids https://t.co/xFg2We5iwa

https://twitter.com/longcovidhell/status/1684989214700515342

“In the absence of vaccination, prior infection remains the only means by which children can, ironically, become immune, and evidence shows that ensuing protection is highly variable and often insufficient….

#LongCovidKids


#LongCovidKids https://t.co/4jUPn3lTAvinews.co.uk/news/science/t…

🧵 “We now need to explore whether the lack of implementation is due to a lack of commissioning of services, or whether it represents centres choosing not to follow the guidance & use alternative strategies without evidence base.” @DocStrain

#MECFS #NHS
thetimes.co.uk/article/thousa… “It is important that decisive action is taken to address these issues and ensure that #MECFS patients receive the appropriate care they deserve,
@SonyaChowdhury
@actionforme

#PostViralIllness #Disability #Health

🧵 “researchers say they’ve come up with a list of 12 symptoms that can reliably classify someone as having Long Covid a working definition that should accelerate research into the disabling condition.”
#LongCovid @CNN
amp.cnn.com/cnn/2023/05/25… Postexertional malaise, or the worsening of health after mental or physical activity
• Fatigue
• Brain fog
• Dizziness Gastrointestinal symptoms
• Heart palpitations
• Changes in sexual desire or capacity
• Loss of or change in smell or taste
• Thirst
• Chronic cough

🧵 Our guidebook provides information, support and signposting.

📕 Chapters for young people, parents & caregivers & schools.

🔬Evidence based information & case studies

🤗 Nobody has to feel alone.

To learn more ⬇️

longcovidkids.org/support-guide

#LongCovid #LongCovidKids Long Covid Kids started as a grassroots organisation in September 2020.

In October 2021 we became a registered charity.

Our patron is beloved children’s author @MichaelRosenYes

#LongCovidKids #LongCovid #MichaelRosen #Charity #Support #Children

Minimising the experience of children living with #LongCovid has an ongoing impact on those suffering.

"This is Daniel. He is 16 - LC for 16 months.
Due to ongoing stomach pains, he is scared of eating & now has an eating disorder too, skin & bone"

#LongCovidKids #ChildHealth "This is Poppi. She is 7 - #PIMS March 21 after #Covid19, she was so poorly in @AlderHey for 2 weeks. Poorly ever since.
Reinfected in Feb 2022 at school - now worse than ever. Drs haven't a clue what's wrong with her I, want my little girl back"
#LongCovidKids

💈On the day the @ons report 26,000 CYP have symptoms for at least a year (⬆️ 3000 from last mth)
we received an email from @10DowningStreet in response to our visit on April 1st
It confirms the concerns of the children⬇️

"We feel ignored"

@FYI_SkyTV

https://twitter.com/FYI_SkyTV/status/1512466716089016329?s=20&t=UVhfmkCiGleto406UBG_rA

April 1st - 12 #children living with #LongCovid traveled
to #london to deliver their own letters documenting their #pain, loss of #sight, #mobility, organ damage, diagnosis of #PANS #MECFS #FND #POTS #MCAS and the detrimental impact it has had on their lives.

#LongCovidKids

1) Are you taking parental leave or having a break from work to care for your children with #longcovid?

A parent asks -

“I am wondering how parents are managing their work life whilst their little ones are so poorly. So far I have juggled things and taken annual leave but 2) it’s difficult to see how this is sustainable with no end in sight.

@longcovidwork @DHSCgovuk @CitizensAdvice
are you able to help ?

#LongCovidKids

Have you seen the #LongCovidKids Padlets?
@padlet is an interactive website/app that provides a visual library of internet links that our team updates as new information emerges.
Think of it as a scrapbook of useful links
Since the start of the pandemic, we have been collating resources & info to help us improve recognition, support & recovery
We have five Padlets suitable for different audiences;
• Children bit.ly/3DbaR2d
#LongCovidKids #ShineALightOnLongCovid
@FYI_SkyTV @suepeters21 @tes @ihv @earlyyearsontap @LucindaNatDoc @PYL_London

These children have endured chronic and disabling symptoms.

Today they handed in their letters for @BorisJohnson to share their experience, hopes & ongoing infection risk fears.

#ShiningALightOnLongCovid #LongCovid #LongCovidKids CEO Sammie McFarland handed in the new charities NEW support guide available as a free digital resource for families, kids, schools, healthcare professionals parents and caregivers.

#ShineALightOnLongCovid #LongCovid #LongCovidKids

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

Please join us in welcoming our NEW #LCKchampion Dr Anna Brooks

BCA PhD Immunologist and Senior Lecturer at the Faculty of Science, University of Auckland, New Zealand

Give her some #LCKfamily 💕@DrAnnaNZ

#LongCovidKids #NewZealand #NZ @jacindaardern
longcovidkids.org/champions/dr-a… #LCKChampion

https://twitter.com/longcovidkids/status/1503105005406064643

Group Post
"Spent all of Wed in hospital , to be told my child was fine - I've just had to pull her up the stairs to bed. She's too heavy to lift - couldn't even crawl up
I'm angry angry angry & feel so let down by the NHS & our Gov
Our children are like ghosts!!
#LongCovidKids Group Post
"we got the results of S's extensive bloodwork. White blood cell count ⬇️and Iron &Vitamin D very low. Started him on Iron & Vitamin D,repeat bloods in 3 mths. It's not surprising he felt exhausted. They don't yet know why all this happened"
#LongCovidKids

#FactCheck 1 of 3

#LongCovidKids is not a campaign group.

We are a charity that represents and supports children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.

🏴󠁧󠁢󠁳󠁣󠁴󠁿🇮🇪🏴󠁧󠁢󠁷󠁬󠁳󠁿🏴󠁧󠁢󠁥󠁮󠁧󠁿🇨🇦🇬🇷🇮🇹🇦🇹

https://twitter.com/FullFact/status/1491467430656421893

#FactCheck 2 of 3

Children's real risk of admission due to Covid increased during #Omicron

Jan 2022 3,797 child Covid admissions
Assume 53% primarily Covid = 2,012

Jan 2021 [Alpha] 1,243
80% primarily Covid = 994

Omicron TWICE as likely to hospitalise children due to Covid.

1/8 What we need is;

#CommunityAction
#MaskUp
#BackToSchool

Thanks to @CoSchoolsTools @guardian @zoesqwilliams
@HenryBurridge @Elodie_A_N

#LongCovidKids #Education #TEACHers #SpotCovid

shoutout.wix.com/so/24Nugz070?l… 2/8 To assist with @GOVUK rollout of CO2 monitors to schools @CoSchoolsTools have created 4 videos, and other materials, that aim to explain how #CO2monitors can help #teachers manage their classroom #ventilation for comfortable healthier learning.
coschools.org.uk