Thread by @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

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

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

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 ⬇️

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

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.

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

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