Long Covid has debilitated my kids, but nothing changes in school.

Sasasa, her eight-year-old daughter and her six-year-old son all caught Covid-19 in the first wave. The whole family has been suffering from long Covid since.

My initial infection was manageable, but then I just kept going downhill.

“18 months later, I’m left with permanent heart, lung and eye damage, and I struggle to do the most basic things at home. I’m under the long Covid clinic at the UCLH, but they are just managing symptoms rather than trying to find the cause.

I’m very frustrated as I’ve had to go private for a lot of my treatment.

“The consultants at the long Covid clinic don’t seem interested in suggestions, studies or pushing more tests, aside from the usual ‘bloods’ and chest x-rays. The NHS just sent me for echo after echo. It was actually my private cardiologist that found my heart inflammation nine months later via MRI.

My children caught Covid from me in April 2020.

“My then five-year-old son was very ill for weeks on end. Fever, coughing, pain, hallucinations, headaches, phantom smells and tastes. He also developed pains all over his body, deterioration of vision and burst vessels in his eyes.

My then seven-year-old daughter initially had really mild symptoms

“And a few months later started having chest pain and breathing problems and is now diagnosed as asthmatic. She is also left with eye problems.

It’s been almost impossible to get medical care for the children

“My GP has dissuaded us from getting help at every opportunity. Our paediatrician finally diagnosed them with long Covid in February, but we’re still waiting on tests. We have no idea if there will be more serious, long-term impacts.

Schools need awareness of long Covid.

“The school has been very supportive throughout but still has minimal Covid protections in place. My daughter is fully aware of this. The senior leadership team (SLT) has dismissed her concerns as ‘anxious’ returning to school.

Children ARE affected by Covid.

“I’ve tried explaining to the SLT that there’s no point telling her that children are not affected by Covid. She knows that’s a lie as it’s happened to her. It would also be gaslighting her to tell her that Covid has gone away.

A dangerous lack of mitigations at school

“There are no masks, and they’re now doing assemblies with two year-groups in a tiny hall. Next week, ‘Meet a Teacher’ is going ahead with the parents of 60 children crammed into a tiny hall. The teachers are teaching across all year groups again, and they’ve restarted singing in music lessons.

Communities need education on Covid.

“The school is opening windows, but they only open about two inches in the upstairs classrooms. Parents seem oblivious to the risk, and I feel I’m in the minority. We lost a Teaching Assistant to Covid last year, but people seem to justify her death because she had ‘underlying conditions’.

Many families have no choice but to send their children in

“I’ve sent them back to school as I’m struggling to work part-time with long Covid. I wouldn’t be able to homeschool as well. They love school, but every day is a worry. I may not qualify as Clinically Vulnerable, but I certainly feel like it!

We need to #CountLongCovid.

“The parents and children with long Covid have been forgotten in all of this. We don’t fit in anywhere. It’s a horrific situation, and I’m wracked with guilt every morning when I wave my two goodbye.”

For support and information around these issues, follow @SafeEdForAll_UK on Twitter.

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