So, the Health Minister announced there would be Long Covid clinics operating in Northern Ireland from—leave aside the fact that peoples’ experience of them in England has been really mixed, right, leave aside, just park that fact that even when do get it going, it may be shit, right. It was announced they would operating from the 1st of November, but I’m hearing from the woman, directly from the woman who will be delivering the service to my daughter, that she still, at this time, in the middle of December, practically Christmas, doesn’t even know if the service that she’s trying to line up and deliver has even really been commissioned or not and won’t be able to tell me until January, and maybe in January won’t be able to tell me either, what? Like how are you, how is anyone supposed to function with that? You know, what do you do? And, and in fact, one of the lines that Rosie wrote in her in her letter was, you know: "My dad has been told that there’s nothing for under 18s, does that mean I have to wait until February 2023 before anyone will try to help me?" You know? Because that’s when she’ll be 18. She’s just supposed to rot until then. It just, it leaves me speechless actually, to some extent.
 
So even leaving aside all of that, I do know, because one of our friend’s daughters goes to gymnastics with a girl whose mum is a rheumatology person and she’s doing some sort of stuff with people, with adults, but she said, “Look, don’t hold your breath because it’s crap what we’re doing, you know, we’re not doing really help, we’re just advising on management and stuff,” which is, kind of, what I’m expecting, but, you know, you just think is this, given, given the mass level of disability that is being unleashed on our population through a, frankly, criminal policy of not protecting children properly, I think at the very least you would try and ensure that you could provide some kind of care; some kind of care for them, having not protected them when, when you sent them to school. But no, you know? So…

She can’t engage with school beyond occasionally I manage to get her in for an art lesson. Art is really what she wants to do; art is what she loves. She wants to go to art college, and cognitively, it’s easier for her to do that than try and do A Level Psychology which is, you know, it’s just pie in the sky at the moment. But if we can support her and work with the school to at least get her through the art, that would be a massive achievement I think, and would make her feel better about things.

So, she’s actually looking and exploring this, might be something you want to ask her about? About interpreting her experience of Long Covid through her art as her, sort of, project that she has to do a project this year, so her teachers encouraged her to think about ways that she could look at that. So she’s thinking about how she might, she might represent, you know, her old self as a dancer and her new self as a bed-ridden, you know, so that’s—at least that’s something that she can do.

And, you wonder—I mean, we can’t cope with what the number that we’ve got already because we still don’t have a Long Covid clinic…I checked yesterday again with the woman who is supposed to be providing the service for Northern Ireland or our Trust area, and I got, I’ll actually read you what it says, because I got this email back from her. She was very sympathetic on the phone, very nice, but so her first email was: "I can confirm I have Rosie’s referral to the Post-Covid Syndrome Service; it was received on the 1st of November. As discussed, I have been, and will again, following your call, seek an update in regards to under-18-year-old provision and will come back to you, please find some information attached and an app."

Right, some information about self-management and fatigue, okay: "I understand how distressing the condition is for her and for you and the challenges you are encountering trying to access appropriate services." Now, to get through to her I had to battle my way through the outpatients’ people at our local hospital, who then told me, “Oh, no, we’re not doing them here, you have to ring the other hospital that’s in our Trust area.” I rang them, they had no idea in what they were, they had, they didn’t know what, why was I ringing them, “Don’t know anything about that, sorry.” And they found somebody who was working on, in some, like, I don’t know, like, breathing hub or something, I don’t know, like, respiratory recovery type thing, “Oh, you need to speak to them.” So, I spoke to, you know, eventually got through to somebody there and was referred to another place, and they got through to this lady who will be, in theory, delivering this, the paediatric Long Covid service for our area, but I know several people now who have Long Covid and have real trouble. I’m, you know, I have post-graduate level education. I work in government, I’m used to dealing with, extracting information in difficult ways, right, but, you know, and I have that good, sort of, persistence, but if I had brain fog and fatigue and all of that stuff, there’s no way I would have managed to get through that.

So one of the things about sleep was we were trying to keep her bedroom just for sleep, but she shares it with her 14-year-old sister, so you know, it and then because I’m working, I’m working up in our bedroom today, so then this is the other place where she would come and she would sit on our bed and just listen to music or maybe do some crocheting or something, but then, you know, is she going to want to do that if I’m sitting here, you know? So that, what I mean, we’ve basically got what was a three-bedroomed house which we’ve, kind of, extended and converted a bit, but there’s seven of us living in it, there’s not much space, you know? and when part of what she needs is quiet and time to just, you know, kind of, properly relax, maybe meditate or whatever, it’s very hard to do it if you’ve got an eight-year-old bouncing up and down around you, you know?

So that’s, I suppose that’s one of the big worries, you know, because you read about myocarditis and pericarditis and various things that I don’t know anything about, you know, I’m an economist, I’m not a health specialist [laughs]. And then I started thinking then about this MRI, I wonder what that is, and I made the mistake of looking at, you know, brain changes in kids with Covid and I Googled, you know, is it spongiosis or something? And I shouldn’t have gone there because it’s just like—because then once your brain has like taken you to worst possible place, which it probably isn’t but, you know? So, you know, the internet is a wonderful thing but, in some cases, it would be better if it was just turned off, you know, and so I suppose, yeah, that’s not a route I would recommend for anyone, you know, cross the bridges when you come to them rather than building bridges you don’t necessarily need to cross I guess.

So, the cardiologist was really good; he was really good, he spoke directly to Rosie rather than to us. He’d also had Covid himself, so he was able to relate his experience of tastes, loss of taste for example to her and explain that his, at least, had come back, it took a long time, but it had come back. Because that’s one of things that she finds really actually, you know, actually psychologically, I think it’s one of the hardest things because food, mealtimes are just miserable, and, you know, it’s, it’s like pure, and we’re just trying to come up with different things just based on texture: what, what’s at least going to be crunchy, you know, but have some kind of nutritional value.

I had to at that point say to Rosie, “Look, you know actually I haven’t quite, quite honest with you, you know, actually what, what we’ve done here is organise a, a performance for you to hopefully show that people love you and are rooting for you.” and so basically her, her, three of her friends from the dance school and then Lauren from Riverdance, basically performed a number of, of different steps for-, and that was great, and it really cheered her up and they played a couple of video messages.

I don’t know if this will mean anything to you, but I managed to get a video message from Michael Flatley who was the, was the original lead of Riverdance, and the woman who was his partner, Jean Butler, again, like real, proper, international superstars and Jean Butler, in particular, is someone who Rosie really has always looked up to because she’s a phenomenal, phenomenal, powerful dancer, really terrific and if… you know, well, Lauren described her as the First Lady of Irish dance, you know? So, so, that was great to get this kind of, and they, they did personal messages, you know, wishing her well and saying, you know-, and so that gave, that gave Rosie a real boost. And she was absolutely, I mean, we, we kept it, we were very tight with it, we kept to, like, 45 minutes, you know, that’s all it was.

She was absolutely busted afterwards, but happy, really happy; it was the first time we’d seen her smile, she just, she just cried and said, “Thank you Daddy,” you know, and I felt like I’d actually, actually managed to do something to help her for., you know, for a while. So, I think a combination of that and probably the antidepressants starting to kick in a bit made a bit of a difference in her mood, you know?

And there are other, there are other things which are positive, you know? Actually being involved in this, this study I think is something that she can say to herself, well look, it hasn’t made me feel any better but perhaps it’s going to help some other people, and that’s, that’s a good thing in itself. and one of, one of the things about resilience and emotional well-being, is doing things for other people is hugely important, you know, protective of mental health problems, so if she feels that she’s, she’s contributing something to the, to the wider body of knowledge or to helping train people, then that’s a good thing. And the other thing that she’s done, I helped her write a letter to the Education Minister in Northern Ireland, and the Health Minister, and to their respective committees in the Northern Ireland Assembly, and to the Youth Assembly here, we sent it to a couple of other places, I can’t remember, Barnardo's and a couple of other places, the Children's Commissioner, and just basically explained what Long Covid has done to her life.