Keep away from social media and the news, because you don’t get a balanced view or information. And I suppose, keep talking. Just find someone you can talk to, and if that somebody is on Intensive Care, a group outside of it, somebody who’s had a similar experience, whatever, just find that anchor point, because that will help you then to know what… ‘cause you don’t know what you need at that point. It’s only a year later that I can sit back and go, yeah, that’s what I needed, or that’s what I need going forward. You won’t know that, so just find an anchor point and stick with that. I mean, that might be the Ward Clerk, I don’t know, it can be anyone. But just find that anchor point, ‘cause they’re important.

So, you said your family’s mostly back to normal, your husband’s mostly back to normal, but [for] you, things changed, yeah?

Yeah. I mean, it’s as normal as it can be, I suppose, in the current situation. It’s not much different to how it was before. I mean, I think from my perspective, I’m a little more cautious around people, but that’s just that fear of catching it again, which is ridiculous, ‘cause I’ve had my vaccine. He hasn’t. He’s due to get his at the weekend, which is quite nice. But, do you know, it’s funny, so [daughter]'s in secondary school, and she has to lateral flow test twice a week. I find that quite anxiety inducing. Just waiting for that test to tell me that she’s negative. Which is really strange, really strange? But I can feel myself getting anxious in case she’s positive. Again, I can’t rationalise that, there’s no logic behind it or anything like that, but I don’t like doing it, so I suppose that’s it.

But nothing’s changed, and I think that’s the thing as well. It’s almost like you go through this massive event, and then all of a sudden, it’s all back to normal again. And that’s quite disconcerting in itself. I worry about being around people, that’s my main thing. I’m less tearful talking about what happened than I used to be. I am angry, I do hold a lot of kind of anger and resentment around the communication issues at the hospital, that was a big deal. But I’ve had to just turn it round so it’s a positive thing, and I’ll use that in my teaching, and my sort of clinical practice.

Yeah, it’s difficult to know what to say really, because it’s like we’re back to normal, it’s like it didn’t happen. And that’s strange. I actually get a bit bored of him talking about it, is that awful to say? Oh, my God, I mean, he’s going to dine out on it for ages. We talk about this all the time, and it’s again going back to what we were saying, about him saying that whoever at work didn’t have proper Covid, because they weren’t on CPAP or whatever. And I know again, that’s that sense of humour, but actually I just think, let’s not re-traumatise ourselves, let’s not go over it again and again and again. Because I don’t want it to be our defining thing. That’s important, that it doesn’t define who we are, as the family, as a couple, as individuals, ‘cause it shouldn’t, you know? There’s other amazing stuff that happens, and that will happen in our life, and I don’t want that to be it.

They had a mechanism in place where you didn’t ring the ward at one point, ‘cause I think what was happening is everybody was ringing all the time, saying, how’s my, you know, whoever?

So, you would ring this particular number, and it was the PALS number, or it was a…it was somebody who wasn’t clinical, but they were manning the phones, and you would give the patient’s name and number, and they would read off the screen what was happening, which I think was great, but what they would be doing is reading to you nursing notes. What that doesn’t tell the person that’s ringing is, are they eating, you know? How do they look? Have the asked for me, you know? What can I do? Do they need toothpaste? That sort of…the kind of, the softer skills, or the softer information that you need to know. And I suppose going back and thinking about what I was talking about, the photographs, I needed to see that, ‘cause I needed to see him, it’s the same thing with that communication. You can’t see the patient through nursing notes. And there’s very little information that they could have given. So, if they’d have said, okay, this is this, this is this, and I’d have asked a question, they couldn’t have answered that, because it was, the people that were answering the phones were not necessarily the people that can give that. And I think there were nurses manning it, but they weren’t directly involved in that care.

So, I think, again, it’s one of those conflicts that I had, that I was really disappointed with the communication, two thirds of it, ‘cause I’m not going to fault ITU, I thought they were ace. But the conflict arises because I understand the pressures that they were under at that point, they were dealing with something they’d never dealt with before, et cetera, et cetera, and I acknowledge that. But it’s almost like the humanity was lost in the mix. And people were scrambling around to put lines of communication in place, but I don’t know, had anybody at any point said to families, what do you need? It’s almost like there’s this inherent assumption that the clinicians or management can sit around a board table, and go, what are families going to need? And that’s what’s lost. And I’ve found this, you know, through my own work, I know that, that you can have a view as somebody working in that environment as to what you think the patient needs, or you think what the family needs, but unless you ask the family, you’ll miss the mark. And that’s what it felt like. They put all these things in place, like, they had this thing where you could take a picture of a drawing that your children had done, and email it to them, and they’d print it, laminate it and take it to the person. And, whilst on the face of it that looks really lovely, [non-speech event] it just is impersonal and actually what you want to do, is have a conversation with your person or the softer stuff. It was almost paying lip service to it, it was like, what can we do to placate the families? That’s what it felt like. And I don’t think that was the intention at all, but it felt like no one had asked the families, so communication was really poor, really poor. Yeah.

And again, I do feel really conflicted about it, because I don’t think it was intentional, they were doing their best at the time, but they failed. Yeah, they failed.

I know it’s one to one nursing, I know it is in ITU, but that was difficult. And they’re intensivists, I know by what they’re doing, but they had the time to speak to me. And at one point, the consultant, the arrogant consultant, who I really like, I say that, but I really liked him, I couldn’t get my words out, I’d be crying down the phone, and he just sat and listened to me. He didn’t say, can we call you back, or whatever. He got how upset I was, down the phone, and he gave me the space to do that, even knowing he had a full intensive care ward and that he had patients that were dying, he gave me the space to do that, yeah. So, I know that they were really up against it at that point.

In terms of support, it would be really useful to know that families can go somewhere, talk to someone about their experiences, without that being contingent on the person who was unwell, ‘cause that’s the other thing as well, I know that there are local support groups that [name husband] is going to access, and that families can access them to, but that’s contingent on him being there. And actually, I don’t want him to know how I feel. Because I don’t want to re-traumatise him, I don’t know how my reaction to it, part of the reason he’s okay, is ‘cause he doesn’t know how visceral that reaction was when he was in hospital, and that’s important because I don’t, yeah. So, something independent of the patient, a recognition, oh, I don’t want a lot, do I? But recognition from local providers that families go through this. And I know that people went through a lot worse. There’s somebody at work whose husband was in Intensive Care for three months. Three months, and was tubed for like, probably about two thirds of that. And I can’t even begin to imagine what she was going through. My husband was in Intensive Care, for probably about four or five days, that’s nothing in comparison, but that doesn’t diminish how traumatising that was. Yeah. It’s almost like there’s a scale of it. People think, well, he was only there for so and so, you can’t feel that bad. Actually it was dreadful.

So, this nurse rang me, and he’d finished his shift, and I knew he had quite a long way to go, ‘cause he’d told me where he was working, and he had finished his shift, he’d donned, doffed and donned, whatever, and he wanted to ring me and tell me how the day had gone, from a nursing perspective. And that is the one episode in all of this, that just stands out to me. Because he didn’t need to do that. He could have just gone home to his family, and, you know, just left that. I’d already spoken to the consultant, so he could have kind of ticked that box, and gone home, but he didn’t. He rang me. And he was telling me things, like how he’d washed him. And that was really important, because it was, although I needed the clinical stuff, I needed that too.

Maybe we can start with the difference that you described between the ward and the ICU?

Yeah. Communication was the biggest issue for me, and I have to say, before I go kind of into that, it was one of the things that I was considering going to PALS about. Not as a complaint, but just to have that conversation about, this is what it’s like to be on the other side. Because I had lots of those conversations with friends that still work clinically, because I don’t think they get that. Unless you’ve done it, you really don’t get it.

So, ITU were brilliant, I have to say. And if they couldn’t speak to me, they would give me very clear parameters in terms of what to expect. So, I will call you at, and the reason I’m calling you at that, is because I’ve got a drug round or I need to go and do this, or whatever, which was great. And then they went above and beyond, because I would then get phone calls from that nurse, I need to find that nurse, I have to have that conversation with that nurse, because he needs to understand the effect he had, and the difference he made, just by making that phone call and having that conversation as a human. So, I’ll find him at some point.

The wards are an absolute different kettle of fish. I was just…and again there was this conflict for me, because I know what it’s like being on a busy ward, and having to deal with patients, families, and it certainly would have changed if I was still clinical, it certainly would have changed the way that I approach families. So, I just wanted to speak to, the nurses were fine, but I needed to speak to a doctor, so that I could have that conversation. And I think it would have been better if they’d have said, had done the same thing, this is when I can speak to you, or this is the reason why…but they didn’t. It was the, okay, we’ll ring you then, and they didn’t. And the biggest issue was that they didn’t contact me when he deteriorated.

I sat in my house with my children, thinking everything was fine, and it wasn’t. So, I lost all trust in them, because I thought, if he dies, they’re not going to call me. And that was really hard. And I think what that did, is that then stepped up the number of times I was calling. I thought, right, I’m going to ring regularly now, because I need to know what’s going on.

Now, well, you want to know what was kind of going on at home, as well, at that point? Okay. So, I was in contact with, obviously, my colleagues and my friends, and my best friend was great, she was really supportive, but she kind of didn’t know what to do. And I was sobbing down the phone, it’s just not…not me really. But I had some really close friends at work.

But she is very, yeah she’s very, I can’t even describe what she’s like, she was just an absolute rock, because she was saying to me all through this episode, because I would just be crying and crying and crying, and she said, what you’re doing is you’re grieving for him. It’s anticipatory grief, and that was really difficult, especially when he came home, because you do, you just, oh God, look at me, I’m going to have to get some tissues, sorry…tissue in my eyes. You hear about that sort of thing, but until you’re in the midst of it, you don’t really get what that anticipatory grief is about, it’s like you’re kind of girding yourself to be able to cope with it, especially when you’ve got two children at home, ‘cause they didn’t really get what was going on. And I wanted to make sure that they didn’t kind of, I don’t know, you just want to take all that pain away, ‘cause if he got better, I didn’t want that to kind of affect them, but equally I needed to be honest with them, and let them know that daddy was quite poorly.

Anyway, so an awful night, I spent quite a lot of time on the phone with that particular person, because she was just brilliant. And so at the time where I was working, I worked within a healthcare kind of team, so there were lots of people, there were paramedics, there were ODPs, midwives obviously, nurses, and we all talk. And quite a lot of them had been redeployed, and there was one particular who’d been redeployed as an ODP but she was working in ITU, and she was helping to prone patients and everything. And of course, on the WhatsApp groups, you’re hearing stories about people with their lungs that are like concrete, because they’ been intubated for so long, et cetera, et cetera. I’m going to just have some tea, sorry. Tea cures everything.

Okay, so that was quite difficult, because I needed to hear it, I needed to see those stories, but equally they were really tricky, because then what I was doing, is thinking, okay, well this is what’s going to happen next. So, I was almost predicting.

So, they were the worst few days, because then he started picking up. He kept on the CPAP, he stayed on the CPAP, he resisted, what I didn’t know at that point, is that he’d declined to be intubated. They went to consent him for it, not that they would have needed that if he’d have crashed or anything, but they said to him about intubating, and he said, I don’t want intubating, I don’t want to be anaesthetised and intubated.  But I think it’s probably ‘cause he’s a stubborn so and so anyway.

So, I think the other thing is, when he came home, I’m jumping a bit, sorry, but when he came home, he was saying how he had watched five people around him die, and they’d all been intubated at that point, and he didn’t want that. Yeah, I firmly believe he’s so bloody minded, quite honestly. Anyway, so that was fine. He then, and this is what I didn’t get, as fast as he had deteriorated to the point where they were considering intubating him, he then started picking up, he then started recovering, even knowing that his lungs were in a terrible condition. So, over the next kind of, I suppose, three days, his oxygen levels, they started turning his oxygen levels down, ‘cause he just wasn’t needing them.

So, I remember hearing that there was a virus in China, and I remember seeing, they all had their NBC suits on didn’t they and they were washing the streets and stuff like that?  And then I remember there being a case identified in a GP’s surgery on the south coast, and thinking, well, that’s a bit strange.  But, I didn’t really think anything of it, because I remember there being, so I was working clinically when Ebola happened, and I remember that they were preparing for Ebola to come to the UK, which was bizarre, and we had these big, outside A&E, like containers, so we’d had these containers put in with PPE and stuff like that, in case Ebola came over, which was just, you kind of think to yourself, it’s never going to happen.  And I think I was about the same with this.  Yeah, that was it really, I think that’s when I first heard about it, and I didn’t really take any notice of it, because it was being played down actually, in the media. Yeah, and it was a case of, oh, we don’t need to worry about it here, yeah. But I don’t really remember anything significant then, until lockdown. In fact, I do remember, now somebody locked down first, I can’t remember, it was a country, it was Italy that locked down before us, wasn’t it? And I remember them locking down, and a friend of mine who I was working with, her kids had gone to Italy on a school trip and had just got back as Italy had locked down. And I remember that conversation with her about, well what are they doing with the kids, are they quarantining them, or whatever? And then I remember getting really cross with Boris Johnson, [me] saying, we need to lock down, actually, we need to lock down, because the students that I was teaching are healthcare students, so they’re exposed to everything et cetera, et cetera, and I remember about a week before, going, why are we not locking down? Why are we not doing this? So yeah, I remember that.

So that, I found really difficult. And you feel really kind of disempowered or, you know, that’s the wrong thing, impotent actually, because you have no control over this. And I just, the NHS means a lot to me, you know? I was trained by the NHS, I’ve worked within the NHS, and I could just see it, I knew what was going to happen, because there’d been years and years of under-funding and cuts, and, you know, I’d worked in the services where we were so under-resourced, but the expectations were that high, quite rightly, that it would only take something like this to come and tip it over.