Thread by @LongCovidKids

🧵 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

With the support of experts, scientists, paediatricians, doctors, nurses, researchers, advocates, occupational therapists, physiotherapists teachers & educational psychologists our team of volunteers created a guidebook to raise awareness & educate.

#LongCovidKids #LongCovid

What is #COVID19 ?

Five ways that #SARSCoV2 is different to flu.

What is Long Covid?

#LongCovid #LongCovidKids

longcovidkids.org/support-guide

What are the mechanisms of Long Covid?

There has been a steady stream of research🔬 from around the 🌍 that is beginning to unpick what causes #LongCovid.

longcovidkids.org/support-guide

LCK volunteers have worked tirelessly throughout the pandemic to shine a light on #LongCovid.

How common is Long Covid?

What is the size of the problem?

Long Covid symptoms in children.
#LongCovidKids

At the start of the pandemic the narrative was children would not be affected by #COVID19

We could see that children were effected & wanted to alert 🚨 policy makers.

We started sharing images/case studies/quotes/family quotes

#LongCovidKids
longcovidkids.org/support-guide

How do children describe Long Covid?

Wrong
Unexpected
Unfair
Never ending
Horrible

How can we all support their well-being ?

#LongCovidKids #LongCovid #MEcfs #PoTS #PANS #PostViral #PostViralKids

Syndromes associated with post viral illness including #SARSCoV2.

PIMS - Paediatric Inflammatory

PoTS - Postural Orthostatic Tachycardia Syndrome

PANS - Paediatric Acute Onset Neuropsychiatric Syndrome

#LongCovidKids #LongCovid #MEcfs #PoTS #PANS #PostViral #PostViralKids

Syndromes associated with post viral illness including #SARSCoV2.

ME - Myalgic Encephalomyelitis

MCAS - Mast Cell Activation Syndrome

#LongCovidKids #LongCovid #MEcfs #PoTS #MCAS #PostViral #PostViralKids

Syndromes associated with post viral illness including #SARSCoV2.

FND - Functional Neurological Disorder

#LongCovidKids #LongCovid #MEcfs #PoTS #MCAS #PostViral #PostViralKids #FND

Support for children & young people.

Most children do recover well from initial COVID-19 infection.
Doctors may tell us that most children recover well from
#LongCovid. This guide includes the experiences of all children,
including our own, who have had a different experience.

Since Long Covid is new, you may see lots of
different healthcare professionals. These could
be at a Long Covid Hub or somewhere else.
Below we have listed some of the people who may be involved in your care. It is best practice
for healthcare professionals to work together.

How to help yourself.

It can sometimes feel that some things are scary and out of your control and of course
that is true of some things.
However there are things that you can do to support yourself and here are some of them.

#LongCovid #LongCovidKids

longcovidkids.org/support-guide

Support for parents and caregivers.

“ Forgive yourself for not knowing what you didn't know before you learnt it”
Parenting in a pandemic has been tough; we have each had to make decisions based on the best available information.

#LongCovidKids

longcovidkids.org/support-guide

How do I spot #LongCovid?

If any symptom comes and goes, or persists for more than four weeks after infection, especially
when part of a constellation, Think Long Covid.

How can I help my child get better?

longcovidkids.org/support-guide

#LongCovidKids #family #kids

How to talk to a child about Long Covid.

“Adults have a key role in,
helping children understand
what is going on, providing
information and reassurance,
limiting media overload and being aware how their own reactions might impact on children” @BPSOfficial

#LongCovidKids

When words run out.
Chronic illness is hard. We know that sometimes it's difficult to find the right words and at other times it is difficult to find any at all. We've
provided some for you. You are not alone.

#LongCovidKids

longcovidkids.org/support-guide

Research, media and facts.

Throughout the pandemic unhelpful headlines have caused upset to families. Long Covid Kids have expert Champions that we look to for accurate analysis of research. They report
accurate and unbiased information that you
can trust.
#LongCovid #Research

Work & caring for a child with Long Covid.
What I can I expect from my employer?
How should I structure my work?
What happens if my employer is not supportive?
What if I am asked to resign?
Where can I find more support?
#LongCovid #LongCovidKids
@longcovidwork #Employment

Support for schools

@NelsonMandela -
"our greatest treasure and our future" and describing
that "the true character of society is revealed in how it
treats its children"

longcovidkids.org/support-guide

#BacktoSchool2022 @HeadsRoundtable #LongCovidKids #LongCovid @ChildrensComm

What do children living with Long Covid want their #teacher to know ?

“Just because I am at school does not mean I am well”

“Sometimes I can’t think straight”

longcovidkids.org/support-guide

#teacherstudent #teachersoftwitter #education #BackToSchool2022 #LongCovid #LongCovidKids

The graduated approach & reasonable adjustments.

The graduated approach, also known as
#SEND Support, is a way of helping to identify
the needs of children and young people with
Special Educational Needs and Disabilities

#LongCovid #LongCovidKids #BackToSchool

Areas of need & things to consider.

Although #LongCovid may not immediately be considered a #disability, #LongCovidKids would urge schools to take note of the reasonable adjustments outlined from page 102 and
implement them as soon as possible.
More ⬇️

longcovidkids.org/support-guide

Mitigating risk.

It is a human right for children to breathe clean air.
We must improve indoor air quality in #schools; reduce
infections, reduce post viral illness and improve health and learning outcomes.

@CleanAirClassrm @hazardscampaign
#cleanair #HumanRights #Children

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