Most doctors have a relationship directly with their patient and the patient is the person they get to know and the patient is the human being that they are trying to help in whatever way they can. In intensive care when your patient is unconscious, you for many weeks sometimes don't ever get to properly meet them and understand who they are and their personality, their character. You know, whether they're fun or whether they're serious or whatever it might be. And so, the way in which we get to understand the patient is through getting to understand their loved ones, their friends, their family and so on. So, we are very used in intensive care before the pandemic to communicating an awful lot with family, whether it be when we're going around on our ward around and it's maybe in the evening and the family are in visiting patients and we say hello at that point and often answer questions. Or maybe it's arranging a particular meeting to discuss the challenges we've got with a particular patient and how best we solve them, how we understand what that patient's wishes might be. Really so few patients write down what their wishes are before they become ill that we’re critically dependent on family to explain all of that to us. And obviously those very difficult conversations are much better had in person, and we've always done it that way, and we spend a huge amount of time with our patients’ families. To have that taken away from us was actually really difficult. Because it was almost like having the patient's personality taken away from us. That human being in the bed. We didn't really know them like we used to know them and all of that is very hard. And certainly, you know, I mean, I can remember a particular case of having to stand by someone's bed and phone their wife to tell them they were dying. It's not easy. It's not easy because they can't see them, they can't understand, they can't visualise or picture – if that's somebody who's never visited an intensive care unit before, they're not going to be able to truly picture their loved one and understand why they're so ill and they're just dependent on our word and our professionalism. And, you know, so those two things together, the lack of support as a doctor or a nurse from the family and the extra burden of them relying on us together is very, very hard, and I'd say that was the hardest thing. Certainly, for me the hardest thing in the pandemic.

And how has that changed over time if it has?  

Well, very early on, I mean obviously, so many parts of society would shut completely shut and hospitals were completely shut and hospitals aren't designed to be closed places. They're designed to be places for people to come and visit and come and go. And you know that that's the normal for hospitals and so closing them and making them such closed spaces in the first wave was big shock to us, was very difficult. We didn't really have any technological response to that. It may seem absurd, but a lot of hospitals weren't even equipped with Wi-Fi, so, you know, using tablet computers to make Zoom calls or Teams calls or whatever it might be was not something that we ever did before, and actually probably most of society wasn't that used to online video calls either. We're all completely up to speed with it now. Pretty much everybody, but before the pandemic, nobody really did that, and we certainly didn't do that with patients. And it took us quite a while to set up those systems so that we could have in many cases we have medical students coming around with tablet computers and giving them to patients so that they could speak to their family or their family could see them if they weren't able to speak, so that we could say hello so that the family could see the doctors and the nurses looking after their relatives, their loved ones. And more and more over time actually using that as a medium to communicate directly with the family ourselves. But there were so many things to do. There were so many systems to set up and scale up, and that was one of the slower ones. And I'd say that was the one of the ones that we perhaps underestimated at the beginning. The impact it would have and the need and the importance of that need. I think by the second wave most hospitals were super-efficient: We had communication hubs. We put special messages in the notes in in the Covid ICU that are all closed, so people working on computers outside the intensive care unit could pass those messages to family and those teams would feed back to us if there were particular problems or if we needed a particular phone call. We had to schedule phone calls to make sure that everybody had had an equal opportunity to speak with doctors and nurses if those things were needed. And like so many things in life it's often the better-off people who have the communication skills to get what they need from doctors and nurses and so on, and it's the underserved who don't have those skills and who are often the most neglected. And making sure that didn't happen was a very difficult thing for us.

And yet I waited all day for them, that was, like, the only thing you could do. I would call the hospital…it became a ritual for me that I would get up before six and I would call before the changeover ’cause I knew that they would…staff would change over at about eight and if you called close to eight, you couldn’t speak to anybody because they were too busy, they didn’t answer the phone.

I would get up at six and I would try and get through. It would often take several times of phoning. I didn’t have a direct number, I was never given a direct number until much later and I had to go through the whole process of listening to the recorded message and the music, et cetera.

And I would generally get through to a nurse and was often really rushed, often busy, didn’t really have time to talk to me, sometimes irritable. I understood that they were pressurised and stressed and particularly at that time I understood that because of the pressure, there was three to one in intensive care where there’s normally one-to-one.

And it was often difficult to hear because they were in full PPE. I only understood this later, I often found it very difficult to hear what they were saying, always asked everybody their name and I made notes all the time, I wrote down everybody’s names.

I spoke to 24 doctors and 64 nurses, and I spoke to each of their names in the time that my husband was there, and it was often difficult to hear their names or to hear what they were saying clearly and I understood alter it was because of the PPE, it was difficult for them to talk with all the stuff on.

And I guess having a little bit of medical background because of being a speech and language therapist, I understood that they were busy doing what they needed to do, they didn’t have time to spend with families in a way that you would have if you’re present at the hospital where, when there’s time, people can talk to you. But you calling doesn’t necessarily mean it’s a time that suits anybody.

Anyway, I made those calls, I didn’t want to be a pain, but I called once or twice or sometimes three times just because I needed to hear that…it was the only way we could look after him, in a sense.

And so, your doctors were in touch with your son. Can you tell me a bit more about what that looked like?

Shireen: Yeah. It was very friendly, the doctors, even though when I was in the hospital and the doctors come round, so my son asked me when the doctor comes round just ring me so they can, so what is the condition and what [inaudible] and he passed them, and they told him everything. …And, you know, the doctors were, never did, never refused to speak, what my son asked them they gave him the answers and everything. They never refused. And when I got out and he’s, when doctors come on the rounds, every day, even the physio, every day physio comes round so they give him, he tried to contact my son and then my son ask everything, his condition and everything. Then my son give him the doctor said, the physio said like that. So, he knows every time he contact the doctor, anything he get confused so he asked them to do this phone thing.

Okay. And so, did the doctors call your son at a particular time in the day?

Shireen: No, when it comes to a round in the ward. Yes, if sometimes my son thinks…

Yacoob: Mostly, when the doctor come round and checking me there, so I put the phone to my son to talk to him because you know, when doctors say something, which is no my knowledge much, so they keep talking to my son, all the time.

Shireen: Yes. But when he’s not feeling better, I mean, he's not in a good, my son sometimes phoned the ward nurse and asked how his condition is and everything.

Yeah. So sometimes, you called your son when the doctor came and sometimes your son called the doctors to find out. And is this your doctor, your son who is a GP?

Yacoob: GP.

Shireen: Yes.

Let’s go back a little bit over the contact that your family had with staff, are you aware of how they were kept informed of how you…

So, my husband was the one that got any updates, and then my husband would phone my mum and dad and my sister, and then my mum and dad would phone my auntie, and my sister would then phone whoever, and my husband would then phone my friends, or would phone one of my friends who then, as you do, sets up a WhatsApp group, and it filters through the WhatsApp groups. So [husband] would phone once a day and speak to whoever, or they would phone him, but it was only once a day, an update.

Yeah, and my colleagues that I work with, they were limited to phoning once a day as well, because they would phone up, apparently, and it made a lot of the staff in ITU laugh, they would phone up continuously, that they had to speak to the matron and matron had to let them know that they would give an update on me once a day when the nurse in charge did an update.

So I think they were bombarded, but yeah, the consultant who looked after me would phone [name husband] and give him an update daily on progress, and [name husband] would have a list of questions which I found when I…not long ago, actually, and he’d have a list of questions of things that he’d want to ask, or my parents, my sister or somebody would want to ask, and he would go through and ask the questions, get the answers and then pass the answers back, yeah. But that must have been hard for them, because normally you see someone, don’t you, you know. For me, it was fine, I was asleep, I was having an extended lay in, but it’s hard for them, because they can’t see you, and they can’t even touch you, and I think that’s got to be the hardest part for your family, and people don’t think about them, about how it affects them a lot of the time.

It’s probably harder for them than it is for the person going through it at the time.

Because I was the only one liaising with the hospital and then doing this Facetiming, you were having to try and relay that information. To be fair, it’s like being at work, trying to relay about your loved one to the rest of the family and everybody. I was getting literally 40 calls and messages a day, because we’ve got a lot of friends and family. So, everybody wanted to know. And it was very difficult to try and tell people, family members and friends, that there wasn’t too much… Because the minute you said oh, little bit brighter today, they said oh great, great. So, everybody looks at it differently and they think there’s going to be huge improvement. Then you’re having to say the next day there’s not a big improvement and things aren’t very good. So, we were really careful how we told everyone. But yeah, holding it together, because I was the only one, apart from my daughter, who was struggling. She was very helpful because she was staying with me, we were Facetiming. So, it was both of us really trying to hold it all together with everyone else. And because it’s my husband, you’ve got friends and family and children, but it’s your husband, isn’t it? So that’s what’s harder.

Did you feel like you had to make any decisions anywhere between his admission and when you last saw him?

Yes, obviously there’s quite a lot of decisions because day to day life has to keep going, but you’re stuck here not being able to visit, not being able to go out, talking on the phone and then trying to, I’ve got to make that decision when you got the news to phone the rest of the family. That was quite hard. So, you’re trying to make a decision, right, I’m going to phone… I did it in order. I phoned our daughter first, then my stepson, then my stepdaughter, and then other family members and friends. So, you’re making those decisions all the time, of different…and you’re really careful to not give too much information because you don’t want to jinx the situation, so you’re really careful of what you say, because otherwise, you didn’t know which way it was going. He could have made a really good recovery and come out of ventilation, which people do, or the other decision where it’s not good at all, you know. So yeah, you’re having to make decisions all the time.

The consultants were phoning me up when he was really poorly they were phoning me up most days really, the rest of the time I would speak to the nurse looking after him on that [inaudible] the doctor would answer the phone and they would say, you know, I’d ask to speak to the nurse looking after him because I didn’t really know who’d answered the telephone and they would say oh i’ve been looking after him I’ve just seen him do you want me to give you an update or would you prefer the nurse to do it, so I was like yeah that’s fine. So, I was getting updates mainly from the nurses looking after him but also from the doctors as well. And they would, especially the nurse that knew me they would tell me technical information, you know, they were telling me things like ventilator settings and things like that on, you know, on a particular day then I sort of had a bit better idea how he was progressing and what sort of regime they were using for weaning him off the ventilator and things like that when, when, when he got to that stage. And, you know, when he did have really severe organ failure, they were telling me sort of what doses of adrenalin he was receiving, things like that. So right from the beginning the when he went into hospital he was put on CPAP immediately so they, he was only I think he was in A&E and then he was only on a ward for about 12 hours before he was transferred to intensive care so yeah they basically told me any technical details that I wanted that I asked for and actually volunteered for technical information the whole way through, the whole way through.

In the Intensive Care Unit, you always knew if there was something to worry about, depending on which doctor rang you, so when the consultants would always ring you, it would be, oh my gosh, no, no. Sometimes I would come into my bedroom, ‘cause you had to always give your, I used to have to give my husband’s date of birth every time, so that would authorise them to speak to me, and sometimes I would do that, and then I would run away, so that the kids, I know it sounds very weak, so that the kids would be, mum it’s fine, come in, it’s fine, dad’s doing okay, ‘cause your brain just goes all over the place really. And you kind of think, well, you’ve got through the cancer, you’re going to get through this as well. And amazingly he did.

I’d spoken to one of the junior doctors, and she’d said to me, and again, the information that was coming out wasn’t very clear, they just were like, oh, he’s suddenly deteriorated. One couldn’t understand why or where that had come from. And pretty much, you know, his…they didn’t even have this discussion, they said, his ceiling of care is going to be intensive care, the CPAP machine in intensive care. And the next 24 hours are critical. If he doesn’t improve, then that will be the ceiling of care. And it was kind of like, where has this come from?

And it was a real shock to the system, it was like, well, you know, what about ventilation, what about this, what about that? Obviously, as the conversations went forward, they explained that ventilation wouldn’t be the right option for him, because he is 78 years old, and basically the prognosis for anyone that has gone on ventilation, hasn’t been good at that age, and he basically wouldn’t survive that.

But again, I think the way it was communicated was so harsh, in that, you know, discussing ceiling of care, I just think there needs to be a bit of discussion around it, rather than just saying, straight out, this is what the ceiling of care’s going to be, he’s got 24 hours, if he doesn’t improve, we’re taking him off. And I think that’s the other impression that was given, that if there’s no improvement within those 24 hours, then effectively he won’t even continue with the CPAP machine, so they’ve got to see an improvement in those 24 hours, and if not, they’re not going to carry on.

Anyway, he was put on high levels of oxygen and then 24 hours later, the doctor comes in and says, oh, you’re improving really well, we’re going to put you on a ward. And it was just like this kind of up and down, and the inconsistency in the message, was just like, driving us insane.

So, yeah, so then he was put on the CPAP machine, well again, actually, no, it took a bit of time, and then it was kind of like, okay, they’d made out that it was so critical, these next 24 hours, then you’re kind of expecting updates regularly, and they’d kind of said, as soon as we get him on the machine, we’ll let you know how he responds to it.  And it was like, we didn’t hear anything, and then it must have been a good five hours later, in that time I’d tried to call, and it was kind of, you know, it was kind of like, we’ll call you once we know what’s going on.  Which again, I understand, they’re very busy, but I think when you’re in a situation as a family member, when you’ve heard news like that, when you’ve been made out to think that these next few hours are critical, you’re kind of like, well, someone give me something as to what’s going on?

The nurses were amazing, I was kind of one of those people, one of those really annoying kinds of patient’s daughters that was regularly before, in the evening, I’d call at night-time, before I went to bed, I’d call to get an update on his saturations and how he was getting on. And then also, first thing in the morning, to find out how his night had been, and then kind of in the middle of the day. So, I’d be wanting to keep an eye on his saturations, and I think a lot of the time, doctors and nurses, are like, well what do you need to know this for? But because I had a basic understanding of what was going on, I’d gone through it with my husband, and obviously done loads of research, for me it gave me that comfort knowing, okay, I know where he’s kind of at. And then when it wasn’t going so great, I kind of knew.

The information that I got from [name teaching hospital] was very much in-depth, with everything that they did with him. You know, from how they were cleaning him, what they were doing and whether they’d played the videos to him, what medication he was on. And they went through the whole thing. It could be about 20 minutes I’d be on the phone sometimes. So, it was…I didn’t really have to do too much research. And I think sometimes ignorance is bliss.

In some sense.

And did you want more information at any…did you want a different kind of information at different stages?

When he went back to [name local hospital] I found really hard, because I’d had that…the information in the morning… Because the doctors used to do their rounds in the morning and I’d have my update it, sort of, settled my mind during the day. Whereas when he went back to [name local hospital] and he was still in ICU, there was one night that I didn’t get a call and it just…me and Rob [son] were, like, on the floor with that, just like, just to have that call, that…it was, like, that reassurance of a phone call. Yeah, it was just that reassurance. But they were very…it wasn’t that they weren’t thorough, but you could hear the… their time was precious to them, you know? That’s how I felt and, like I said, in [name local hospital] you could always hear the machines going off in the background and what have you, so that was hard.

Very much difference between those two hospitals, then?

Yeah. But I think, like I said, because [name teaching hospital] was a training hospital, so a lot of the training doctors were going around with the main doctors collecting all the information and then they’d go away and phone. Which made it so much easier, I think, for the main doctors there.

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.