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Long Covid Kids / longcovidkids@bsky.social

@LongCovidKids

Jun 1, 2022 • 13 tweets • 19 min read • Read on X

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@ons

💈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

@GOVUK

100+ page guide providing evidence-based information on #LongCovid in CYP from industry experts, research, and statistics from @GOVUK @ONS.
Did anyone read it?
We were assured @BorisJohnson would receive it.

#LongCovidKids

15 mentions of #mentalhealth , 1 mention of #LongCovid

This incredulous response demonstrates the ongoing need for our charity to be a voice for CYP impacted by #SARSCoV2.
#COVID19
#LongCovidKids

Read the email ⬇️

@sajidjavid

All in the same week as @sajidjavid commitment to "improve the lives of people with ME"
"For too long it hasn’t received enough attention which is why I will develop a cross-govt plan to improve outcomes"
#LongCovidKids #MECFS @actionforme #LongCovid

https://twitter.com/sajidjavid/status/1529721695849807872?s=20&t=UVhfmkCiGleto406UBG_rA

LCK believe all children should be able to thrive and look forward to a positive future.
That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.

https://twitter.com/jneill/status/1531962688879964163?s=20&t=UVhfmkCiGleto406UBG_rA

@10DowningStreet

The 2nd line in the email refs a letter sent to Sammie on 7/12/21, and although it does not relate to the visit to @10DowningStreet on 1/04/22 and the response received on the 1st, since it is mentioned and in the interest of transparency we inc it here.
#LongCovidKids

@govuk

Just to add the funding mentioned has not gone into pediatric #research.
We are not aware of any @govuk biomedical paed research.
There is no 'treatment' for #LongCovid (although some symptom management is possible).
#Vaccines, were offered too late, & do not prevent

@nadhimzahawi

#LongCovid
Families experience threats from @nadhimzahawi attendance officers
There is not 'a concern' that CYP can't take part in usual activity, they are #disabled by symptoms
Phased returns are not suitable for relapsing/ remitting symptoms ⬇️

https://twitter.com/LongCOVIDPhysio/status/1503990746235473920?s=20&t=p6gurWXzItbDk64P0sQvsg

@10DowningStreet

Who should 'regularly check in'?
Guidance suggested by @10DowningStreet is inadequate.

It is for all these reasons, and more, that volunteers and industry experts gave their time to create the support guide we delivered to @BorisJohnson @GOVUK to improve the outcomes for CYP.

@suepeters21

Our FREE RESOURCE for #schools #families #children #youngpeople #HCPS #OTs #Physios #GPs #Schoolsnurses & all who need it
@suepeters21 @Occ4LifeLtd @Elodie_A_N @MichaelRosenYes @elisaperego78 @SGriffin_Lab
#ShineALightOnLongCovid #LongCovid #LongCovidKids
longcovidkids.org/support-guide

@threadreaderapp

@threadreaderapp unroll please

@Ruth5News

The full thread can be viewed and shared here.
#LongCovidKids
@Ruth5News
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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