Lily

Age at interview: 34

Brief Outline:

Lily is a 34-year-old geriatric doctor living with her husband and 4-year-old daughter. Ethnicity: White English.
 
Lily developed Covid symptoms in January 2020 after a “mad 18 months” working in elderly care but didn’t think it was Long Covid until much later. Lily has been worried about her Long Covid disrupting her daughter’s life. Lily was interviewed in November 2021.

 

More about me...

Lily first developed Covid symptoms in January 2020 and noticed when she couldn’t smell the cup of coffee her husband gave her. She had used some of her annual leave to spend more time with her then 3-year-old daughter but felt “rotten” at the end of the first day. Lily thought it was because she was tired after a “mad 18 months” of working in a hospital, but realised it was Covid when a test she took at work came back positive.
 
The day after noticing her symptoms, Lily struggled to get out of bed. She kept having fevers so was stuck at home for around 8 weeks. Before thinking it was Long Covid, Lily thought she might have had an infection, so she took antibiotics, but this didn’t stop the coughing and chest pain, nor the breathlessness that made it difficult to walk down the stairs.
 
Lily’s daughter became more anxious when she wasn’t able to sit at the table and eat meals with the family like she used to and began checking on her a lot. Lily felt that having Long Covid has also disrupted her daughter’s life, as lots of the plans they had together – like birthday parties and holidays – had to change. She felt that starting school was especially difficult for her daughter, as she found it hard to settle and she had developed a fear of taking Covid tests.
 
Back at work, Lily felt she had lots of support from the hospital that employed her and found the Long Covid Clinic they put on for employees helpful. However, she was a little disappointed that the physiotherapy sessions didn’t focus on people’s individual needs and found it too intensive for where she was in her recovery. Lily also joined a Facebook group for doctors with Long Covid and found it useful to have a place to ask questions about Long Covid when she didn’t want to “bother” her GP about it. 
 
Lily trusted her GP but felt the community Long Covid Clinic she was referred to was a waste of time because it took them months to get back to her and she didn’t feel that they listened to her concerns. Lily felt sympathy for her colleagues, but doesn’t think that the Long Covid Clinics are lining up with what Long Covid is becoming and felt that a centralised approach which recognises current research would be better.
 

 

Lily, a doctor, was keeping up to date with research being conducted in Germany. She said “there’s isn’t a lot of evidence because we need to make more evidence”.

I presume you you’ve seen maybe some of the research about the micro clotting as a cause of Long Covid? Yeah.
 
Great so I’d, there’s been loads of chat about that on the doctors with the Long Covid group as I’m sure you can imagine. And Germany are recommending triple therapy. So they’re recommending aspirin, clopidogrel and apixaban, which like my geriatrician heart is going like ‘oh my god how can anyone prescribe that, that’s terrifying’. But my patient heart is going ‘oh please give me anything that’s going to make me better, I’m so bloody sick of this’.
 
So I was, so like I can 100% see both sides of this like incredibly frustrating issue for everyone. Like I get as a doctor there’s no way I’d prescribe all three, especially not backed up by NICE. Especially when we’ve only got like beginning, the beginnings of the research.
 
But there’s also the geriatrician part of me that’s like, yeah but do you know what, at the moment there isn’t a lot of evidence because we need to make some evidence. And actually, the only way we’re going to be able to do anything is by taking at least some trials like trying some stuff out. And then the patient part of me that’s like, ‘oh I don’t really want to take triple therapy, but I’d really like to be a bit better than I currently am.’

 

Lily felt she only got the medical conversation that she wanted from the Long Covid clinic because of her medical background and because she “pushed and pushed and pushed.”

And so he then rang me at 8 o’clock that evening which was yeah, I was really impressed about. And actually, looking him up, it turns out he’s also got a private Long Covid service, so I think he actually does know. And he was just so, he was exactly what you need from a Long Covid service. He’d read all the bits and pieces. He knew what was going on. He was, you know, he said, “What are the main issues now?” So, we were able to have a sensible, focused conversation about what the issues were. That we’d got, cardiology was being kind of sorted, that fatigue was still an issue but actually it wasn’t a concern if that makes sense, you know, I can understand why I’m fatigued. I don’t need to, like it’s tedious but it’s fine. And then he said, you know, “I know obviously you’re a doctor. You’ve been doing lots of reading. You’ve done all the research. Obviously so have I. We’ve been in a forum this afternoon trying to discuss what, you know, all the current evidence and what’s going to happen and at the moment, understandably there’s no NICE guidance, and so everyone is reluctant to try and prescribe the triple therapy.” And I was like, you know, “I totally get that.” And, and he was like, “But I, well I think everyone’s watching the research at the moment and I think it’s not going to be long before people are trialling it off license and actually that’s the point. So, at the moment there’s not a lot we can offer formally because we don’t have the backing, but I think it’s probably coming.”
 
And it was like, that’s exactly the conversation I wanted. To know that you guys are as on board with the research as I am. That you’re, you’d like to be doing more if we had the option but there isn’t that option at the moment. And like I see all of that, and I said, you know, “Your thought process is mine, without the overlay of ‘but I just want to get better.’” Like I can see exactly what you’re thinking and it’s what I’m thinking and it’s really reassuring that you’re thinking yes this is a medical issue. There is something physiologically going on. This is not all just…and I hate to use “just chronic fatigue” because I think there’s going to be a lot coming out in the next couple of years as a result of Long Covid that’s going to change how we look at chronic fatigue and ME and all of those bits and pieces. But I think it’s, I’m using it as a term for how it’s been, how it’s been described and dealt with up to now. So actually, and we spoke for about half an hour and came away feeling significantly better than I had done after the last phone call. And it was like that’s the service you need to offer. Like I get that our CCG haven’t commissioned direct referrals and stuff like that. And like I get that you don’t have control of that, but actually you need to. That’s really important. Why are we putting more work on the GPs? The whole point of the Long Covid clinic is to take the work away from them so that they’re not having to deal with really complex weird stuff that no one quite understands. And they shouldn’t have to write a cardiology referral when it’s very obvious that Long Covid is affecting cardiac issues. You know, it should, it needs to be more of a Long Covid coordinating care across all the different specialties, so it was incredibly positive.
 
And he was like “Look you’ve got my mobile number. I want you to text me. I want to catch up again.” So, I was like ‘Okay, crikey. Wasn’t really expecting that.’ “I’m going to-,” and he was like, “I’m going to refer you for our physio and our OT both to see you, but I want them to see you in person because I think that’s actually more important now.” And it was like, yeah actually I think you’re probably right and I’m sure there is some stuff that can be done virtually and that, you know like, if it is fatigue management, I totally understand why that’s necessary. And I’m very aware that I’m very bad at that. But actually, I think there’s a lot of other stuff that’s going on, and I think having physio input particularly would be really useful at the moment. So yeah, there you go. There’s my two sides of the Long Covid clinic with just how good it can be. But I think the only reason that I’ve got that is because I’ve pushed and pushed and pushed and been medical and known the right questions to ask and went through just feeling absolutely dreadful about it. Like, which just seems silly, so.

 

Lily experienced an absolute crash after pushing herself too far in a physio-led rehab programme session.

So the hospital bless them have been amazing and, as my employer, rather than as the hospital, have started up a Long Covid clinic for employees only which is great but also terrifying because it means there’s more, there’s a lot, there’s enough of us out there for it to be a justifiable thing to have. And they set up a rehab programme which had started, it must have been a week or two before I think, maybe it was that week actually, I think it must have been the Monday and then [husband]’s birthday was on the Thursday or the Friday, [husband]’s birthday was on the Friday and the problem was that the person who was running the clinic, one of the physios was absolutely excellent and really lovely, really sensible, had done as much reading as there is to do really on Long Covid, understood all the kind of post exertion malaise and everything and was really like “No, no, no we’re working individually like it’s a group setting but you’re going to work individually within your own goals and your own remit and like we will tailor it to you.” And to some extent she already had because the sessions were either on, I can’t remember like either Monday and Thursday or, no Monday and Friday or Tuesday and Thursday so in both of those scenarios I couldn’t do one of them and she was like, “That’s fine I’ll change it round, we’ll do a one-on-one session on the other day, it will be fine.” But then I went to the first session and I think that maybe the people who were running this session didn’t have quite the same level of understanding, at least that’s certainly how it kind of came across and so pushed a bit further than I was, I would have expected and not in a kind of, ‘You must do this’ way, but just in a kind of ‘This is what we’re doing’ way, and you kind of just do what you’re told in a class, don’t you, because that’s like how exercise classes work. And was then just so bad by like the Thursday I was back to how bad I’d been like the first week or two, like I physically couldn’t get out of bed, couldn’t eat couldn’t do anything, so absolutely ruined my husband’s birthday, poor man so yeah so that had happened so, I was trying to come out of this absolute crash [laughs].