I wondered if you would just be able to tell me how things have been, you mentioned in your e-mails that there’s sort of, [your daughter] was starting to show some signs of improvement when I spoke to you the last time but that that’s continued recently?
 
Yes we’ve been thrilled, yeah definitely she’s going from strength to strength so she’s stopped the Fortisip drinks that she was having and started eating again, yeah. Her mobility’s improved and she’s started to use her left arm which we were quite worried about, so…and she’s wanting to go out, she’s started to come in the bus, in the car to the bus stop. And she’s seen a couple of friends, she’s got dressed again so her skin problems are improving. Not, not entirely gone but all going in the right direction, so. She’s even started wanting to do a bit of schoolwork [laughs]. So we’re really, really pleased yeah, she’s at home, just building up her eating and her strength and then we’ve had a meeting with the school about a very gradual return which really just helps her socially reintegrate before we try and address what she may have missed.

And apply pressure to the Government, definitely contact your MP, try and initiate change, I think if we don’t tell them how many children are being affected they’ll, they won’t know, if you just stay on Facebook I think you would never know I think probably it is useful to go to the newspapers.

The other interesting thing that is coming out is, you know, the HEPA air filters for classrooms. Because I definitely feel that in the lack, you know, considering the lack of treatment once they have got Covid or Long Covid, there’s not much there, we have to focus on prevention in these two years before we get protocols and, you know, evidence-based medicine out there. So [cardiologist name]’s school has two HEPA filters per classroom, and they’ve had no major outbreaks of Covid since January, other people on Twitter have had 50% of the class off since January, you know, because they’re getting reinfected. So, I just think in my mind in an ideal world I would send [daughter] back to school with two air filters in her classroom. Especially going into the winter.

It is a worry. Because I think there are so many theories about what’s causing Long Covid but they don’t really know. But one of the most worrying one is kind of like T Cell Apoptosis, so the in fact that your immune system is almost depleted from having Covid which then means whatever else you get can take hold which I think is what happened with [my daughter], I think, so the EBV [Epstein Barr Virus] then really took hold, the glandular fever. So, anything I can do to prevent that again, you know, before she goes into this soup of microbes at school.

Okay, thank you [laughs]. Yeah, so I think the main stressor with the journey, was nobody wanted to acknowledge really, when we’d been into hospital, that Long Covid was a condition that they could engage with. So, my husband and I’m a radiographer and my husband’s a vet, we felt like we had to almost fight for every hospital appointment and every GP appointment, and just say, “My daughter’s still not well.” You know, I think nobody took ownership of her care until very late on in March when we saw a paediatrician in [town].

So, I think we’ve just felt rather belittled and fobbed off for the whole journey with a very, very sick child, and we’ve been given some diagnoses which have been sort of full stops, like functional pain, full stop. You know I’ve been…I managed to secure some contacts through people I know, doctors who have children with Long Covid, and those have been extremely supportive and they’re echoing things that we have said as well, and the Long Covid Kids support group has…this has given me more support than any conventional NHS pathways. So, it’s been really down to us to navigate her care in that way and that’s been the major stress: are we doing enough to nurse a sick child day and night? You know, a sense of not being believed that she was ill, that I was being an overreactive mother, that she wasn’t that sick, when she was [incredulous laugh]. And she’s described as one of the most severe Long Covid cases by the doctors I’m speaking to who have Long Covid children, have acknowledged, and she’s the first one in the [area] to be referred, from the paediatrician we’re seeing, to the Long Covid Hub in [city] and that pathway’s taken a long time…

Yes, yeah we did, it wasn’t overly useful, I think because she’d turned a corner it’s very much they wanted just to watch and wait rather than intervene with things that may do more damage than not. So, it they didn’t really offer up any follow-up support in terms of physio or occupational therapy, the cardiologist wasn’t at the meeting, the Long Covid hub meeting which they were meant to be, so we still haven’t really had an input on that. So, they said they’d get back to us, but they haven’t. So, we did see [name], our local MP, my husband had a meeting with him to discuss the lack of paediatric Long Covid pathways and the funding. And we did get a letter back from the [county] NHS Commissioning Authority saying that they haven’t got things right with [my daughter] and they were going to talk with NHS England on refining the pathways.

Yeah so I suppose that with [my daughter] there’s almost like two stages, when she was at her worst which was January, February, March, she was in bed all day, I had to syringe in Fortisip, I had to help her to the toilet, the room was dark she was crying all day, you know, I couldn’t leave her side because I was, she couldn’t move by herself so I just sat in a dark room with her. And my husband did everything else you know, so that, that was at it’s worst. And she would wake every two hours in the night so I would just read and research and sit with her and just kind of ride it out a bit. But now we’re in the recovery phase, we are suggesting things to help her get back into normal life so we’re not, we don’t really make her do anything because you can’t make anyone do anything but you kind of, we’re encouraging her to eat more and encouraging her to go outside and it’s a, it’s a really nice phase where we’re just building her back up.

So, we, her mobility has improved this week last week she was able to sit without help and this week she’s we’re still helping her walk, so again it’s, it’s quite the care burden is fairly high so one of us is always with her. And preparing all the food and getting her going supporting her with her school work and socially, hopefully, you know keeping her up beat with the challenges and trying to talk about things as they’re coming up in her mind, because she’s talking more about the future and things as well, so one of us is always there to sort of support her [laughs] in her recovery so we’re just lucky we can be flexible with what we’re doing and juggle it between us, but I think it would be really difficult if you were a single parent.

Yeah, so my husband has been amazing, he’s just been able to… he’s a [job title], so he has been able to delegate a bit, and he was half-managerial, so he’s been able to just look after my sons completely, because I can’t get [daughter] in the car and do the school run or go shopping, or do anything, you know? So, he’s just taken over their care 100%. Which I think he’s enjoyed bonding with them, but we’re very fortunate he was able to do that, and I really, you know, appreciate we’re in a privileged position and the majority of people I… I can’t… I dread to think how it would affect you know somebody who worked in a factory, and they were on a minimum wage, you know it’s just, yeah, really hard.

Our parents don’t help, they’re a bit old, but so they… you know, it’s just a different time in their lives, so it’s pretty much me and [husband]. We have had some friends helping after school and doing shared lifts and things as well, but he’s really just so lucky he’s been able to step away from work. He… he has to do some on-call and night work at the weekend, which was a bit tricky, but on the whole, he’s been around and really supportive. He’s done everything. He’s cooked, he’s cleaned, he’s… you know, he’s… he’s done everything I would do.

She has… you know, I think the first three months of this year her quality of life has been horrendous she’s not had any joy in her day. But the last couple of weeks I think… which is why I’m probably slightly chirpier today, we’ve seen a bit of an improvement. So, we’re absolutely thrilled. We’ve got an MDT (Multi-Disciplinary Team) meeting next week to try and plan a way forward with her recovery, which I feel now is possible. I feel she’s just slightly out of this kind of acute stage, I don’t know why, and I don’t think… but… so she’s started talking again, her brain fog has lifted, and she’s started just playing with her right hand in the bed and interacting for longer periods of time.

You know, before she had complete brain fog complete sound intolerance, you know, she was just so ill. You know, when people are that ill you do wonder about, like, just sedating them to try and bring them back, you… you know, the level of suffering she went through I think was extraordinary. She can’t wash, allodynia is awful, you know, it was just horrendous. Yeah, just a really sick child. And they just put her down to being awkward in the hospitals which was really hard to take because she’s not, she’s not an awkward child, she’s really lovely and she’s up laughing now a bit and talking again and you just think, ‘actually she was just really ill’ and they were keen to just say she was awkward, or I was awkward.

So, I think we’ve just felt rather belittled and fobbed off for the whole journey with a very, very sick child, and we’ve been given some diagnoses which have been sort of full stops, like functional pain, full stop. You know I’ve been… I managed to secure some contacts through people I know, doctors who have children with Long Covid, and those have been extremely supportive and they’re echoing things that we have said as well, and the Long Covid Kids has… this has given me more support than any conventional NHS pathways. So, it’s been really down to us to navigate her care in that way—

And that’s been the major stress: are we doing enough to nurse a sick child day and night? You know a sense of not being believed that she was ill, that I was being an over-reactive mother, that she wasn’t that sick, when she was, and she’s described as one of the most severe Long Covid cases by the doctors I’m speaking to who have Long Covid children, have acknowledged [incredulous laugh].