Parents from The Long Covid Parent support group regularly report the challenges they face accessing paediatric services.
One parent tells their story.
"Before March we were quite an active family. Jo loved her weekly gymnastics, swimming and drama classes. She has always been a very active child and it is important to note that she was fortunately very healthy and rarely off school.
Her attendance had been 100%.
The week before schools closed for lockdown 1 I pulled my twelve-year-old son Tom out of school as he had been coughed at several times in his face.
The week before schools closed he started coughing. I seriously didn't think anything of it as he's always suffered from croup.
By Friday his temperature was 105
My husband and I grew more and more concerned his fever wouldn't go down with paracetamol and we lay awake listening to him coughing all night. We called 111 several times. All you were told was to "stay at home".
Eventually, after an 18 hr wait for a call back from Toms doctors he was prescribed Amoxicillin. Three days passed and his symptoms were terrible;
Inability to stand
Cough with his lungs making a terrible rattling sound.
After another 111 call we were told to take him to hospital. He was given oxygen, Azithromycin, his discharge note said "likely Covid".
Thank god they sent him home.
Fourteen days from when his coughing started my husband and I started coughing. I went to the hospital on Easter Sunday after a 111 call as I was struggling to breathe.
My oxygen levels were low, I was told to go home and lay prone and call an ambulance if it got worse.
During this time we tried as best we could to stay outside in the garden with Jo and took turns resting. Tom was beginning to improve but still had very high temperatures and his lungs were still making awful noises when he was breathing as were mine.
Jo understood that we couldn't read her usual bedtime stories because we couldn't breathe.
About ten days after our symptoms started Jo complained that her toes were hurting, they were very red and inflamed. I did a video consultation with the doctors who prescribed a cream. I now know this is called Covid Toe.
The next week she had a horrible rash on her head, again I did a video call and she was prescribed an antibiotic cream. One month later we seemed to be over the worst.
Then on May 12th whilst eating her dinner Jo was crying in pain clutching her chest.
I have never seen her like that as she would never complain about feeling unwell. After 15 mins she was so distressed I called 111. They said to take her to A and E. She had an ECG after the pain had stopped, it came back normal and we were sent home.
Since then Jo has had chest pain in her chest every day, sometimes two or three times a day.
On August 16th I took Jo back to A and E as she had been running around at Launceston Castle, our one day out since March, it left her screaming in agony all the way back to the hospital.
Again a normal ECG when the pain had gone.
On August 18th Jo was having another episode of terrible pains when resting at home, again we called 111 and were told to take her to A and E in Tiverton.
The doctor at Tiverton advised me to get the Kardia app to monitor her heart whilst having pain. I did buy one and every time she has an episode it comes up with Tachycardia and once Arrhythmia.
On October the 3rd after having a full four consecutive days at school Jo was in a terrible state. Lots of pain, even lying in bed doing nothing. I called 111 after she had chest pains for 28 hrs plus.
As I was on the phone to a doctor they called an ambulance.
Our oximeter showed her oxygen levels were low, she looked very pale and was in constant pain. The paramedics did an ECG it showed abnormalities so they wanted to take her in.
My frustration is that since June I have been asking for help regarding these ongoing issues.
No one wanted to refer her to a cardiologist. I have repeated myself so many times, concerned she wouldn't be well enough to attend school.
Finally in early September, sure enough, she was having pains at school.
I sent an email to our paediatrician's secretary asking why would no one refer our daughter? Only after that email did I get a call saying Jo now has a referral.
I feel like because Jo is on the autistic spectrum, all this has been put down to anxiety.
Anxiety is such a blanket excuse.
Jo gets the pain at anytime; Playing, eating, bathtime, reading etc.
Does anxiety pain last for hours on end?
Regardless if this is Covid related or not Jo should have been referred to specialist many months ago, she has been living with pain, and undiagnosed symptoms.
We used to go on long walks, now we can only go on a long walk when my husband is home on a weekend because she will have pain and he is able to put her on his shoulders. We used to walk to school and back 4 times a day.
We read books, draw, do crafts, watch TV, cook, play on the Ipad but we can't walk on our own.
I have suffered strange ongoing symptoms as has my son.
I have read many articles about how parents are being labelled as having Munchausen by proxy whilst trying to get help for their children and this scares me.
The last place I want to be in a pandemic is a hospital,
unfortunately, that's really the only place we've been this year.
When you are left at home to manage symptoms and google heart pain, the advice is very clear.
Get medical advice, and that is what we did."
LongCovidKids.org is a parent and patient-led campaign & support group for parents of children with Long Covid. Our story started with a short film on long-lasting symptoms of Covid in children & we are working on The Long Covid Kids Study with PeopleWith