💈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

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
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 ⬇️
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
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.

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
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
#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 ⬇️

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.
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#LongCovidKids
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More from @LongCovidKids

May 5
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
Parent

"If my husband wasn't still working at home, I'd have to give up work. Daughter 17 but needs reminded to eat, drink etc"

#LongCovidKids @longcovidwork
Read 17 tweets
May 4
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
Read 7 tweets
Apr 1
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
Founder and CEO of LCK Sammie Mcfarland "Today is an incredible testimony to all the family's children and volunteers from our organisation who have worked tirelessly throughout the pandemic to raise awareness for children living with Long Covid who have been ignored.
Read 15 tweets
Apr 1
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
Read 9 tweets
Mar 13
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 @surf4children

Dr Danilo Buonsenso
Paediatrician Dept of Woman and Child Health and Public Health Rome

#LongCovidKids #LongCovid

longcovidkids.org/champions/dr-d…
Read 16 tweets
Feb 18
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
Group Post
"I’m sorry that we are all here, but grateful to have a community. My 15 YO is at the beginning of her #LongCovid journey. The biggest problem is nausea … she has lost 3kg this wk. Any other advice?"
#LongCovidKids
Read 10 tweets

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