Hello 

Good morning and welcome to this week's Sunday newsletter.

Since Autumn 2020 we have been raising awareness amongst parents, caregivers, children & schools to provide up-to-date evidence-based knowledge that supports informed decision-making.

Understanding & acknowledging what is happening enables informed decision-making and reduces risk.

Pets matter! 

WHATS NEW THIS WEEK

This week's newsletter at a glance.

• New Good News - Disability living allowance available for children with Long Covid

• New Bad News - Long Covid clinic appointments for children are cancelled due to lack of funding.

• Global - Announcing Long Covid Kids Canada & USA
• CO2 Monitors - CO2 monitors funded by your donations are on their way
• Research - Research into Long Covid is gaining ground
• Statistics - Children and COVID infection for this week
• Myth Buster - The reality of living with Long Covid
• Why - Run Long Covid Kids? 
• Who - Do we work with?

This week we have been listening to a podcast with LCK champion DR. Danilo Buonsenso reporting findings from his studies on Long Covid in children and reading with interest the results of a survey on adult longhaulers and vaccines.

Another busy week. The LCK team have been filming with global media channels & we reached out to 180 schools involved in the LFT trials. Fran had final confirmation on paper about Long Covid in children in journal ‘Archives of Disease in Children titled ‘The legacy of COVID-19 infection in children – long-COVID will have life-long health/economic impact’. 

We were sad to reach 10,000 Followers on Twitter, but of course grateful for the support, goodness knows we need it.

Our joint efforts are making a difference, thank you for being part of LCK. 

The narrative is changing.

Are you able to help in some small way?

Many hands make light work. 

Warm wishes

Sammie, Fran, Nathalie and Hannah

LCK Team 💚🧡💚

NEW THIS WEEK

Children's Long Covid Clinic Appointments are Cancelled

LCK broke the news that the Evelina Hospital in London is cancelling Long Covid clinic appointments for children. 

The reason given: No funding

Some of the children in our group had been waiting months for their sessions. Fran & Sammie are writing to Matt Hancock and MPS. 

Disability Living Allowance for Children with Long Covid

The Department for Work and Pensions has produced new medical guidance for DLA decision-makers which includes Long Covid in children

The guide advises that a 12-month award is appropriate for children with disablement solely caused by COVID-19

A child does not have to have had a positive test result to be diagnosed

with the syndrome.

We are delighted to see the DWP acknowledge the Long Covid complexities that we routinely see and hear when working with our Parent Support Group.

Many families have already applied and been turned down, they will now appeal and hope to be supported.

"Some [children] may recover in a few more months and some may recover over a longer time period. Others may remain unwell or become more unwell over time. Fluctuating functional impairment and wide ranging symptoms that change over time, seem to be a feature of the condition"

Decision makers are also able to record COVID-19 on the DLA computer system. This is very welcome news for families caring full time for children suffering ongoing symptoms since their COVID infection

LCK Offer Support to Lateral Flow Test Experiment Schools

This week Long Covid Kids reached out to the 180 schools participating in the Lateral Flow Test experiment, raising awareness that all levels of infection can lead to Long Covid. 

Asymptomatic, Atypical, Symptomatic 

We will be offering our support to any families who have children with lasting COVID symptoms.

Overview of the trial.

Control School

• Students take Lateral Flow Device tests twice a week
• Close contacts of a confirmed case isolate for 10 days
• During the 10 days, close contacts take two of the more reliable PCR tests even if they have no symptoms. The tests are not processed for two weeks

Intervention School

• Close contacts DO NOT isolate. They continue to attend school
• Close contacts take DAILY Lateral Flow Device tests and attend school
• These children have to isolate at all other times other than attending school

Schools are paid £1 000 per week for whole school participation

There is no trial-specific liability angle in place

The DfE will not release the pilot data

There are no details for who is on the ethics approval board

There has been no release of the ethics approval submission document

At least one intervention school is dealing with a case this week. We hope none of the families involved need to go through what we went through and are still going through.

The  B.1.617.2 variant (AKA Indian VOC) has continued to spread across the county with reports that it is at least 50% more transmissible than the highly infectious B.117 (Kent) variant which saw a 19-fold increase in children's covid hospital admissions over the Christmas holidays (England government data).  SAGE has already forewarned of the likely spread within unvaccinated groups.

Our aim is to ensure all families with children affected by ongoing COVID symptoms know that they have a place to go for the support that was not available when our own children became sick. 

LCK GLOBAL

Long Covid Kids Canada & USA

We would like to send the warmest of welcomes to two new branches of LCK

Long Covid Kids Canada & Long Covid Kids USA

#LCKCanada is run by Suzie Golding

#LCKUSA is run by Melissa Lynch 

Long Covid Kids UK is now somewhat of a Headquarters.

The UK branch with be known as HQ and will remain international.

This marks a new milestone for Team LCK as we refine our global advocacy for children during the COVID-19 pandemic.

THE FIRST FUNDRAISED

CO2 MONITORS HAVE BEEN SENT!

Thanks to your donations CO2 monitors are on their way to schools that registered their interest in #LCKAirCare.

More needs to be done to keep staff and pupils safe, now as the new variant of concern is rising, and before Autumn when windows and doors start to close. 

RESEARCH

CHILDREN AND COVID INFECTION STATISTICS THIS WEEK

Data for England. Tested children only

Children who are asymptomatic or atypical in their presentation

can still develop Long Covid

#MYTH BUSTER

WHY RUN LONG COVID KIDS?

WHO WE WORK WITH 

 Long Covid Kids (LCK) is currently supporting projects with;

Long Covid Kids Canada & Long Covid Kids USA

NIHR Long Covid Committee

NHS - National Health Service Long Covid Task Force

  NIHR - National Institute for Health Research Expert Group

WHO - The World Health Organisation Long Covid Forum

The APPG - Across Party Parliamentary Group (APPG)

ISARIC - International Severe Acute Respiratory & Emerging Infection Consortium

 APPG Fit and Healthy Child

Multiple Clinical Commissioning Groups

International Researchers 

International ZERO COVID Alliance

National Voices

Long Covid advocacy groups around the world including:

Wales, Ireland, Spain, Canada, USA, Poland, Germany, Netherlands, Switzerland, France, New Zealand, Portugal, Spain, Mexico

A number of leading children’s hospitals around the UK, and infectious disease pediatricians.

Fundraising CO2 monitors for schools with Safe Ed For All