In January 2022, we resumed workshops for STAGE 3 of APiC’s COVID-19 Project with Children and Young People. Supported by the Children and Young People’s Commissioner Scotland (CYPCS), #ScotYouthandCOVID3 has recalled the Young Consultants who participated in our original two stages of the project.
The study is participant-led, involving teams from Aberdeen, Edinburgh, Glasgow, and (Rural) Stirlingshire and Falkirk, each with 4-6 boys and girls, aged 10-16 in the first round, and now ages 12-18.
We ended #ScotYouthandCOVID2 with a set of 34 Asks to Scottish Government to improve children and young people’s experiences now and in the future. Our Young Consultants also devised a strategy to create a Manifesto for Children and Young People’s Rights in Recovery that supports the needs of as many across Scotland as possible.
In this next stage, we are fulfilling the Young Consultants’ strategy from #ScotYouthandCOVID2. This includes holding more workshops with our original Young Consultants, as well as primary school children, and other groups that have thus far not had enough opportunity to be heard in the pandemic.
#ScotYouthandCOVID3: Long Covid Kids Workshop
In this week’s blog, we report on one of these additional conversations, with young people experiencing Long Covid. The young people and their families are supported by Long Covid Kids, a charity set up during the pandemic to provide support, advocacy, and information to families who have a child that has developed a post viral syndrome related to one or more infections of Covid-19. We are incredibly grateful to Long Covid Kids for helping us recruit the four young people that took part in our sessions.
This is the first of two blogs we are writing to explore the results of this workshop. This blog focuses on the experience of having Long Covid as a child or young person. The next blog will build on the exploration of this experience, to detail the additional set of Asks that Long Covid Kids would like to add to the Manifesto for Children and Young People’s Rights in Recovery.
A Timeline of the Pandemic
Saturday the 19th and 20th March we convened a workshop activity on online platform Mural, alongside three online conversations held over Zoom across the course of the Saturday. The Mural task was opened on the Friday evening, and remained open until Monday morning to allow participants plenty of time to reflect, and add to the board when they had time and energy to do so. Our Long Covid Young Consultants ranged in age from 8 to 16 with an even split of boys and girls.
The first two half hour discussions over Zoom were an opportunity for individual young people with Long Covid to have a chat about their experiences across the pandemic, and for us to help them add this to the Mural board. The final 30 minute chat was to compare experiences, ideas, and results to see if there were shared priorities and Asks to add to our Manifesto.
The workshop task was to fill us in on what life has been like across the last two years. This took the form of two timelines (sketched out below), one covering March 2020-21 and the other covering March 2021-22. Young Consultants were then invited to add in experiences based on:
- What’s been good/easy
- What’s been bad/hard
- Things I would change (or would have changed)
This task raised a wide range of insights, with Young Consultants giving us more detail in our interviews. It was very clear from all conversations that there is not enough public understanding of what it is like to have Long Covid, and the impact that it has on children and young people’s lives.
Helping other people to understand what they’re going through was a very important Ask for our young Consultants, and will help explain their other Asks to the Scottish Government which we will discuss next week.
People Don’t Understand Long Covid
All Young Consultants had become infected with Covid-19 at the very start of the pandemic, and one had caught it again in 2021. They relayed how they had struggled to get a diagnosis, including for related conditions such as PIMS and PANS. One Young Consultant commented on feeling confused and alone when seeking support from their GP:
‘I was told like, pretty much that it’s all in my head and that it’s because I’m using my phone and just, I’m just a bit tired. Like, I had like all the blood tests, like three blood tests, and nothing came from it. So it was kind of just like, I would doubt myself in a way I guess. Because I mean, I didn’t know what it was and no one could really tell me what it was’ Young Consultant, age 16
Meanwhile, another Young Consultant had struggled through multiple rounds of testing in and out of hospital before getting any diagnoses. This was intensely frightening:
‘I still have nightmares about it because they pinned me down to take my blood test. I was really scared and I never want to do that again’. Young Consultant, age 9
Symptoms of Long Covid and related conditions are wide ranging. Those experienced by our Young Consultants include:
- permanent fatigue that can fluctuate within a single day as well as across days, weeks, and months
- Increased fatigue after any form of physical exercise
- Fibromyalgia and serious aches and pains in certain parts or across the whole body, which is worsened after physical exercise, and which can make it very difficult to sleep:
‘I was in so much pain and my legs hurt so much. I felt like I like really wanted to avoid walking because my legs were so sore, my shoulders and my neck. My chest, my head, my tummy and everything was like, really, really hurting.’ Young Consultant, age 10
- Physical weakness in certain parts of the body, such as in the hands which can make daily activities such as cleaning teeth or brushing hair very difficult. For one Young Consultant, this includes their legs sometimes collapsing when walking.
- Brain fog, which means it is very difficult to think and will sometimes lead to unusual behaviour or forgetfulness. This is often worse at certain types of day, which vary person to person.
- Blotches on the skin.
- Feeling depressed and anxious.
- Sensory difficulties, including holding objects, and being easily overwhelmed by social situations or busy surroundings.
For further information about the symptoms of Long Covid in children and young people, visit Long Covid Kids website.
It’s Tough to get Others to Understand
As people don’t understand Long Covid and cannot “see” the symptoms, it’s difficult to explain how it affects your life. This includes having friends and family that don’t understand:
‘After over a year being ill, family is still not understanding and coming out with really unhelpful comments, and suggestions’. Young Consultant, age 9
One Young Consultant also talked about feeling judged in public for using disabled facilities:
‘I was sitting in the bus in like the one of the further forward seats. And people were like kind of looking at me funny. And it’s because I can’t really go to the back of the bus. I’m worried that I’ll fall down the stairs or something.’ Young Consultant, age 16
Young Consultants (and their parents/carers) have found useful metaphors for explaining to others what the experience of Long Covid is like for them. These can help people understand their behaviour, and how to adapt the way they play or interact with them. These include thinking about their illness in terms of having a certain allocation of spoons of “energy” each day; carrying invisible rucksacks full of rocks on their backs, or having a battery that is never as full as other people’s, and runs out quicker. We will return to this in next weeks’ blog.
We Still Want and Need to Socialise
Having Long Covid can make it much harder to keep up with friends. It’s even harder when symptoms can appear and disappear at random. Some Young Consultants are sometimes, or almost always, housebound. However, this doesn’t mean they don’t want to play and hangout with their friends!
Young Consultants talked about experiences where it was really hard to miss out on fun activities, which left them feeling really hurt:
‘I’m still really frustrated that I can’t do what my friends do. I want to go out with them but when I do I feel really ill after.’ Anonymous Mural comment from a Young Consultant
‘Losing touch with friends. They are able to meet up and do things and I feel left out because I’m too ill. They stop asking me, which hurts.’ Anonymous Mural comment from a Young Consultant
One Young Consultant had recently attended a social event, where many of the games involved intense physical activity. He joined in and enjoyed himself, while also knowing his illness would cause him to suffer for it later. He was unable to sleep that night for the pain. Other Young Consultants also talked about how sometimes they might take part in a more energetic activity than they should:
‘I can’t really do football and then I miss out, and then I just have to sit on the bench being bored. But it’s really hard to just sit on the bench for the whole time so sometimes I do play. And then after I’m like, really tired.’ Young Consultant, age 8
Watching other children play at things the Young Consultants used to enjoy and be able to do is difficult for them, and also for parents/carers. Nevertheless, while games like football might not be appropriate for children and young people with Long Covid, there are still lots of less active ways to have fun. The things that our Young Consultants enjoy and can do are:
- online games, with people all across the world! Roblox and Minecraft are great for this.
- Just hanging out and having a chat. For some this is fine to do face-to-face, for others it’s much less tiring to chat online and allows them to talk for longer.
- Playing board games
- Drawing and making things
Young Consultants also talked about how it’s especially difficult during the pandemic to see friends -for example going to the cinema or the shops – as the risk of getting COVID-19 again is still really high and it could make their symptoms much worse. It’s really frustrating that many of the activities that might be less tiring, like going to a nearby café, are too risky.
School is Really Difficult for Us
Young Consultants have spent a lot of time off school. Some returned at various points part-time, while others haven’t been to school since before the pandemic.:
‘I’m too sick to do any school. I am angry because I feel forgotten.’ Young Consultant, age 9
The Young Consultants also talked about the unpredictable pattern of Long COVID, and how difficult this makes it to maintain a smooth learning experience:
‘sometimes when we don’t feel well, like it’s been really tough because sometimes we miss chunks of school times. Like, once. I hadn’t been to school, three weeks in a row, sometimes two weeks or one weeks.’ Young Consultants, ages 8 and 10
One Young Consultant talked about a time he put in so much effort to keep up with his classmates, that it made him so ill he had to spend a few weeks off.
When remote learning returned in early 2021, it helped some Young Consultants stay engaged, and they felt this approach could offer a way of keeping up at their own pace. One Young Consultant also spoke highly of the help she’d had from the school around her Nat 4 tests: in a quiet space, with flexible timings and with a guidance teacher for support. She passed them all! However, the next year, she was told that for her Nat 5s, she has no choice but to take them in the same way as pupils in full health. She said that sitting in a big crowded room and having to complete a test within the set time would be unbearably overwhelming and exhausting, and she felt almost guaranteed to fail.
Lastly, the Young Consultants talked about how difficult it is to pay attention in class when you are experiencing brain fog and feeling really fatigued. Some find school is quite understanding, while others feel it’s not working well at all:
‘I tried to go back to school but I was feeling really sick all the time. I had headache and sore tummy and I was too tired to do any work in my class. Mummy tried to help but I found school too noisy and too bright and just overwhelming.’ Young Consultant, age 9
School is often also where Young Consultants experience the most misunderstanding from people. One Young Consultant talked about being called dumb by a classmate, and lazy by a teacher.
Support from Long Covid Kids
If you’re looking for support for yourself and/or a child who may have Long Covid, Long Covid Kids can help. You can access further information, and download their resource ‘Support Guide: Shining A Light on Long Covid in Children and Young People’ by visiting www.longcovidkids.org
An online support group for parents/carers of children and young people living with Long Covid or suspected Long Covid in Scotland is also available here.
What’s Next?
Next week we will report on the Manifesto Asks from Long Covid Kids which respond to the difficulties in their experience noted above. We are also convening workshops with primary school children, our Original Young Consultants, and four more seldom heard groups over the next month. We will then discuss our findings with our original Young Consultants and release a survey to consult on the Manifesto for Children’s Rights in Recovery.
If you are interested in finding out more about this project, or getting on the mailing list to receive a link to our Scotland-wide survey later in the year, please get in touch with Dr Jenny Wood at jenny.wood@aplaceinchildhood.org.
We will be posting further updates on this project as we go, so follow us on Twitter for updates. We will also be writing a report at the end of the project, to chronicle our journey to the Children and Young People’s Manifesto for Rights in Recovery.
Read about wave one and wave two of #ScotYouthandCOVID here.
Find out about other APiC projects.