Colin

Age at interview: 47

Brief Outline:

Colin’s 16-year-old daughter caught Covid at beginning of term in September 2021. She initially lost her sense of taste and had only mild symptoms but did not test positive for Covid on two PCR tests. After isolating, Colin’s daughter developed many more symptoms including dizziness, noise and light sensitivity, concentration problems and extreme fatigue, which have persisted and she has been unable to return to school fulltime. His daughter has had many medical appointments and tests including an MRI and ECG, both on the NHS and privately, but they all seemed normal. She has been referred to a Post-Covid Syndrome Service, but they were still waiting for an appointment. Colin was interviewed in December 2021.

Colin is a technical analyst and is married with five children, aged 19, 16, 14, 12 and 8. Ethnicity: Northern Irish.

More about me...

In September 2021, Colin’s 16-year-old daughter was in close contact to a friend who tested positive for Covid. Her PCR test came back negative, but she realised she had lost her sense of taste. A further PCR test also came back negative but she had symptoms so they decided she should self-isolate for 10 days. Initially his daughter only had mild symptoms – loss of taste, raised temperature and a bit of a headache – but after the isolation period she began feeling very dizzy. They kept her off school and saw a GP who checked her blood pressure and took bloods – both were normal. Colin’s daughter then developed bad headaches, but normal painkillers didn’t help. The GP prescribed a nasal spray used for migraines that relieved the headaches to begin with, but they returned and became persistent. She also developed light sensitivity and sleeping problems and her mental state and concentration were both affected. Colin says, “when your child is suffering and you can’t alleviate it in any way, you just feel pretty hopeless.”

In October after repeated visits to the GP they were referred to paediatric outpatients at the hospital. It was around this time they suspected she had Long Covid. His daughter has had many medical appointments and test including an MRI and ECG, both on the NHS and privately but they all seem normal. Although there was skepticism about Long Covid in children, Colin says they have been taken seriously and always been seen when they have requested appointments. His daughter has been referred to a Post-Covid Syndrome Service, but they were still waiting for an appointment. He says, “we can’t take away the pain. We can’t get anything fixed. We can-, all we can do is gather what resources we’ve got and plough them into trying to get tests and stuff done.”

Before Covid, Colin’s daughter had been an extremely fit Irish dancer but by the end of October she was unable to walk short distances without being out of breath. Colin’s daughter mental health was suffering, and they decided to throw a surprise short performance of music and Irish dancing in their garden to show her “that people love you and are rooting for you” which gave her a boost.

Colin has been working from home throughout the pandemic to help care for his daughter. He says, “it’s exhausting for us, emotionally exhausting, trying to maintain a front with the other kids” and his sleep has been severely affected. All aspects of family life have been changed by his daughter’s illness, including mealtimes as his daughter’s taste is still affected. She can taste salt, vinegar and strawberries, but not much else so they try to add texture into meals. His daughter has been able to return to school recently, but only for art classes as she doesn’t feel she can concentrate on other lessons due to her symptoms and brain fog.

Colin is very frustrated by the lack of Covid preventative measures in his children’s schools and that the vaccination programme for children has been so slow. He worries that the number of children diagnosed with Long Covid is only going to increase. He finds the lack of treatment options for Long Covid frustrating and has campaigned about the time it takes to navigate the health system and get help. He has found support and advice through friends and extended family and through the internet and Long Covid Facebook groups.

Colin has been fortunate to get Rosie to see a senior consultant, who agreed to see her on the NHS after he watched her interview on the BBC news. He is open to trying things such as low dose naltrexone (which seems to help) and has agreed to try and get a particular CT scan to check for microclots in her lungs.  If he doesn’t find them, he said he will think again and maybe try strong anti-inflammatories to see if it will help her cognitive dysfunction. Most importantly he said:

1. Don’t let anyone tell you that this isn’t real.
2. We must not just do nothing. I don’t know exactly what to do, but I will not just sit on my hands.

Colin was worried about his daughter’s emotional state and the possibility of an “awful negative spiral” and says he felt he needed to intervene.

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?

For Colin, doing things for other people can support resilience and emotional well-being.

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.

Colin talked about how hard it was for his daughter Rosie to find somewhere to be quiet and rest in a seven person household.

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?

Colin found that looking at the internet increased his worries about his child’s Long Covid.

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.

Colin says the cardiologist (who had had Covid himself) was really good. He spoke directly to his daughter rather than to him.

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.

Colin had to ring several different people in his local trust before finding someone who could tell him about the upcoming Long Covid service for children.

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.

Colin is trying to support his daughter to manage some lessons at school and do the subjects which are more achievable at the moment.

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.

Colin was concerned about the lack of specialist care available for his 16-year-old daughter in Northern Ireland.

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…