💈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.
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
The full thread can be viewed and shared here.
#LongCovidKids
@Ruth5News
threadreaderapp.com/thread/1532083…
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