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He and his partner never thought the symptoms she had would be serious, but when she started vomiting and coughing up blood he phoned NHS Direct for advice.
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We went to see the 24-hour GP, you know just thinking that she had some 24-hour thing or nothing too serious. And he diagnosed her with having an asthma attack. Which to be honest with you we thought was complete nonsense anyway. She's never had asthma before. And, we're not medical people but it just didn't feel right. Now I won't go into that bit too much because it's not relevant I guess. So we came back from that initial assessment. Coming back from [town] to our house, which is only a 20-minute drive, [my partner] had to stop to be sick. We then got back up here and she then started having more symptoms, coughing up blood, various things.
I'd already arranged a second appointment with our own GP, just to get a second opinion. But then it just got worse and so I called NHS Direct. NHS Direct were fantastic, surprisingly and fortunately, but they were absolutely fantastic. They listened, they understood the problems, they understood the symptoms and they basically said, “Right, we'll send an ambulance for [your partner] straight away.” I was a little bit, “No, I don't want to cause you any trouble. I'll drive [my partner] to the hospital.” They said, “No. We'll send an ambulance.” So they sent the ambulance remarkably quickly. The ambulance turned up within sort of 10 minutes of the call. And there were two ambulances. Again they were very, very good, very, very helpful and then took us down into A & E.
We met with a fantastic doctor there. The A & E consultant who, well various A & E consultants that looked after us, they had an idea of what was wrong with [my partner] but then they gave her a chest X-ray as well. And then she was diagnosed with pneumonia. Pneumonia at that stage, I think I related pneumonia to what most people relate pneumonia to. It was like something you get in winter, related to a cold, generally old people, but not necessarily too serious. In the background whilst all the to-ing and fro-ing was going on around A & E, both of us heard people outside sort of saying, “Have you seen these X-rays?” as if they were something, not the normal pneumonia X-rays, something a little bit more exciting in medical terms. And then, you know, eventually we found out that it was a bilateral pneumonia, quite severe. But even at that stage we sat and thought, I've gone back and looked at emails and text messages that I sent to various people around that time. It was like, “[My partner's] quite poorly. She's got pneumonia. She's going to be in hospital for a week, and will be off work for maybe two or three.” And then it sort of expanded from there really. |
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During the day he or his partner's parents were always at the bedside and, overnight, he slept on a chair so that he could be with her.
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I was there from… well I was there off and on every day for the whole thing. I stayed at the hospital every night, mostly either in a chair by the side of the bed or in the relatives' room just round the corner. Still in Intensive Care because I had made a promise to [my partner] that I wouldn't leave her side and I didn't want to. Mostly during the day [my partner's] parents and I used to sort of do a bit of shift work so to speak. I mean basically because there were, didn't want too many people round the bed and also time.
My daily routine was initially to be with her most of the time. I'd probably pop off for a couple of hours to give her mum and dad some time with her. Just go into the town and sit and have a drink or a sandwich. And then come back and sit with her for a bit and do sort of a bit of a rota. And then her parents would leave around 8 o'clock and I'd stay through the night. And then they'd come back around 10-10.30 in the morning.
You stayed over in the relatives' room, did you?
The Intensive Care nurses and doctors were very accommodating, let me put a chair by the side of [my partner's] bed. So I think probably of the eighteen nights, nineteen nights, whatever it was, I think probably sixteen, seventeen of those I was by her bedside. And then the rest were just sort of in the relatives' room on the sofa. And that, I mean they were very, very nice, but you know, at a certain stage I sat and thought maybe I was being a bit of an inconvenience. But I tried my hardest not to, certainly not to trouble them and ask for anything. And I didn't, I was pretty self-sufficient I think. Because they're there to look after patients, not to look after relatives. |
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Ask questions, trust the staff and be there for the patient.
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Don't obsess about monitors and screens and graphs and stuff like that. Let the doctors do their jobs and the nurses do their jobs. If you've got any doubts, ask questions. And then remain positive all the way through it and strong for, I genuinely believe that being there for the patient is the right thing to do. And particularly, when I was sitting there I saw patients that didn't have anybody come and see them at all for a couple of days. And then there was another lady in there who had her husband there probably, I don't know, 60 per cent of the time. And not at night but, he was there for good durations during the day. And I don't know, I just think it's got to help. I'm sure it can't be proven that it does, but I think it's got to.
But I would also say if you've got questions, you should ask questions. And if you can't get the answers, keep trying to get the answers. And beyond that, I think, I particularly think, I mean I'm sure there are mistakes that happen and stuff in Intensive Care, but have faith in the people that are there because, I mean particularly the nurses. The only thing else that I could say is that I cannot speak highly enough about them at all. |
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He tried not to watch the monitors too much and, instead, focussed on being positive and on all the things he and his partner enjoyed doing together.
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I remember coming back and sitting there all night with [my partner], just sort of talking to her and trying to be positive and stupidly trying to sort of, it sounds naff and whoever's going to listen to it will probably laugh, but trying to sort of push my positive, push energy through me into her. Like I just remember holding her hands all night. And that night I remember she did fantastically well. I don't know whether it was just a combination of the drugs that she had kicking in or the diagnosis being better or what. I don't know. But by that time [my partner's] parents and I, we were just focusing on numbers on the machines, on the monitors and things like that. And you pick certain indicators that you try to understand and watch those ones.
I mean that's the strange thing, even just sitting by [my partner's] bedside, not necessarily, you can't really do that much with anybody that's ventilated. But I think, and this was another one of the things that I, again I'm absolutely sure it's nonsense but I took pleasure from it, was just being with [my partner] and instead of sitting there, which we were all guilty of at the first instance was sitting there and just watching the machines and just trying to understand, was really sitting there and trying to tell her about the World Cup, tell her about Wimbledon. Not that she would give a damn in the real world anyway. But just tell her about things that were happening and telling her that we loved her and all those kind of things. Trying to give her the positive energy that we needed or I think she needed. And I don't know, I like to tell myself that it helped. I'm sure it probably didn't, but it might have done. And it made me feel better doing that anyway. And that's why I enjoyed being on our own with her really.
I listened to a lot of music when I was in there and just sort of… created like lists of songs that remind me of [my partner] and things like her getting better and coming home or reminded me of past times, all those kind of things. That helped me a lot. I listened to the same probably twenty songs I can't tell you how many times. That helped a lot. And I mean the nurses helped a lot. They were really, really good, really considerate and supportive. |
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He found it difficult having his partner's parents staying with him while she was ill, and became withdrawn.
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I found it quite hard, and if my partner's mum and dad ever listen to this, “I love you dearly”, but I found it quite hard them living in the house. I mean it's a house we'd moved into a week and a half before my partner fell ill and it was a place that we were going to make into a home. And I found it hard them living here when we weren't living here. I found it hard that at certain stages, people were trying to understand how my partner could have got ill and thinking, “Is it anything to do with the house?” and things like that, when it, it became clear that it was nothing, you couldn't pinpoint where my partner got her illness from. She could have been passing someone in the street, it could have been while she was away on holiday, it could have been anywhere.
So I found aspects like that hard. And I think my problem was when, I probably wasn't acting as rationally as I would normally do. And I think certain things bugged me and they bugged me for the duration of my partner's illness, and I found it difficult to park them. And I think that, I don't know whether that is a natural thing that people have you know, because life is just so different, you do latch on to certain things. But, yes, that was a frustration.
They were coming back and living in our new house that I'd never, by the time my partner had come out of the hospital they'd lived in my house five times more than, in fact a lot more than that, yes, I think five or six times more than I had. And a lot more than my partner had as well. And I think this is one of the things that I probably would have done better if, I don't want to say if this ever happens again, I'd try and react, I'd try and be a little bit more tolerant I guess. I think I was a little, a bit of a moody guy at times. And I should have perhaps tried to be a little bit more tolerant to what my partner's mum and dad were going through. I tried really, really hard and I think in some aspects I was, but it just got to the stage where it was difficult. |
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He wanted to have some time alone with his partner and often felt isolated because she was the one he usually turned to for support.
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I love my partner's parents were very, very dearly but at the time, my partner's time and my time was on our own, it's not with other people there, her parents or my parents. So all I wanted to have, either if my partner was in the land of the living or not, all I wanted to do was have time on my own with her. So, we could just be one, just like, I mean it was the closest thing to normal really. But from my side the hardest thing is I think certain people, certain relatives and families, they didn't really understand this was, that from my side the support I have is my partner. And if I have any problems, if I have any issues, I talk to my partner like she would talk to me. And, fine you have parents and other family and relatives and stuff around, but she is my first port of call. And obviously because my partner was the one who was poorly, I couldn't talk to her. And all the time whilst I was sleeping in the chair at the hospital, my partner's parents were coming back to the house and staying in our house. And, you know, they had each other to support them. My parents had each other to support them. And don't get me wrong, my partner's parents and my parents were being supportive to me as well, but that's not what I wanted.
So I think, that was quite difficult in the sense that, I think I probably closed down a little bit. And I tend to be quite a closed person anyway, but I think I closed down a little bit on various people and shut them out and stuff like that because, at that time it was the way I dealt with it. Whether, with the benefit of hindsight I would have probably dealt with it slightly differently.
The only other relationship that I guess may have changed is, this is something that is definitely repairable, but my relationship with [my partner's] parents I guess. There are certain things that happened during, I mean I suppose we were thrown, everybody was thrown into a really awful scenario. And they'd had the love of their life for 32 years thrown into a catastrophic position. I'd had the love of my life for only the last three years thrown into a catastrophic position. But they had each other. I didn't have anybody.
And the other thing is that they obviously wanted to be with my partner as much as they could as well. But I was sitting there thinking that, “I know she's your daughter, but she lives with me and she's chosen to make her life with me and, I'm with her 24 hours a day every day. Because we work together, we live together, we do everything together”.
My partner's mum and dad, I know they've had her for a long, long, long, lot longer time, but they don't, they'll get a call or a text every day and, see her maybe once a month, twice a month maybe. And I felt a little bit crowded and claustrophobic and didn't have a chance to, silly things like, really silly things like, putting bloody hand cream on my partner's hands. You know, and I would do that and then I would go. But then her mum would do it again and by the end of it, what we were trying to do was, try and keep on top of my partner's hands and just give a little bit back but her hands were buggered, they had like seventy-five layers of hand cream on them when she'd got better. And just little things like that and little things around the house. |
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He felt ICU doctors were extremely skilled but was disappointed in the way some gave information about his partner's illness, which felt very negative at the time.
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The doctor and nurse came across and took me into the relatives' room, sat me down and again it was late in the evening, it was during the nightshift, and sort of basically said that if [my partner] didn't improve pretty quickly it was really quite dark, it was sort of a 50:50 scenario. And that was hard. And I didn't really, it was one of those things where you want to be informed of what's happening, but you don't necessarily appreciate the manner in which it was communicated, if I'm honest. And again the doctor I think was a good doctor and the nurse was, I remember exactly which nurse it was, she was a lovely nurse. But the communication of the situation was not the best I think.
I mean I think this is one of the things that we found out through a lot of the whole thing is that the doctors are great at keeping people alive, but they're not necessarily the best communicators in the world. And that was difficult. But again over a period of time you sort of get used to, that it's that doctor's way that he paints the worst picture and doesn't put any positive light on it at all.
You mentioned some of the doctors in the ICU could have been better at communicating news?
Yes.
What would be the best approach?
I don't know, and I've thought about this a lot. I don't know whether it's just the, where we live in the world at the moment in terms of time and stuff like that, but I seem to think that they seem to paint a worst-case scenario every single time. There was never, again this is the obsession with the numbers, if we'd sat there and thought [my partner] had done well, there was never, well certainly at the really difficult times, there was never any positive, or there seemed to be very little positive. I'm sure there was. There seemed to be very little positive feedback coming through from the doctors. And then when they used to sort of take you to one side, it used to be more, I used to dread it when they used to do that because it just used to be more of, “It's getting worse and...”. I mean maybe they were just telling it as it is. And, [my partner] was seriously ill. But it was just how that information was relayed, how it was passed on.
I remember one doctor in particular, he caught me twice and told me some pretty horrific stuff. And it was, I suppose ultimately it seemed like [my partner] was just a number to him. And then there was another doctor, where similarly it was just [my partner] was just another patient. Which I understand from their point of view, she absolutely is. But from my point of view, she's not. She's the most important thing. And you sort of sit there and you wonder whether they, they obviously have so much training and experience in how to diagnose, how to, I've forgotten the name, what the word would be, but how to deal with people's illnesses and problems and stuff like that, but not necessarily how to communicate. And I do wonder if it was me and I could sort of look at a doctor's training, I would say, “Right, these doctors have got to go for, like a percentage of their course has got to be how to handle people”. And I suppose if they were, you know, their skill is in diagnosing people and issuing the right drugs, and why those skills can't necessarily be tied in with how to talk to people and how to sort of say, “Your girlfriend's in quite a tricky position, but we're doing everything we can and I'm quite confident that, hopefully she'll react positively”. To be sort of sat down with someone and saying, “Oh, if we hadn't ventilated her at this time, she would have died within two hours”, for me that's pointless information. It's not the information I need to hear or want to hear, you know.
I don't know if he wanted me to pat him on the back and say, “Well done for doing it at the right time” or not. It just seemed pointless. So I think that again, that would be my probably biggest issue, criticism I'd have. It's just that, sometimes it was just like they seemed to, sometimes I'd be sitting there thinking, “God, is this a bit of a sport trying to upset people”. And I'm sure it's absolutely not. I'm sure I was a little bit sensitive and overreacting. |
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Outreach nurses came to see him and his partner regularly before she was admitted to ICU and prepared them both for what to expect.
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One of the things that [the hospital] did is they had an outreach programme, and on the second day I think these outreach, the nurses from Intensive Care, they go round the various wards and meet people who they think might end up being Intensive Care candidates, for want of another word I guess. But I remember our Intensive Care outreach nurse, a lovely lady who came to see us, well, it seemed like she was there sort of every hour. And she was really, really good. She explained a little bit more about what was going on and what was likely to happen and certainly prepared us for Intensive Care, which is obviously not a normal hospital environment for most people. So that element of it was really appreciated. And I know that's something that, from talking to the nurses, that not every hospital does. But from a patient and partner/relative perspective, it was, at that time it was a godsend. It was fantastic to have. |
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The doctors he spoke to, who were specialists in pneumonia, gave advice to the doctors treating his partner and, together, they helped her recover.
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One of the things that did go through my head was just whether [my partner] was getting the best treatment. And my understanding of Intensive Care and the doctors and the nurses is they're, obviously they're trained to cover all sorts of issues, illnesses, ailments, car accidents, whatever it would be. And I was concerned whether she was getting the right treatment for her condition. So I managed to get hold of someone at another hospital that specialises in this area and someone quite high up in this area as well, because he knew a friend of a friend of a friend type thing. And he talked to me. And that was in some ways good, in some ways bad. Because he definitely said, “Listen, if this is the situation that she's in, she's in a lot of trouble.” But he did also say that, “If you want to get the guys at the hospital to call, we can talk through her treatment properly and give some guidance from a specific, from a specialist hospital point of view”. And ultimately they did do that.
I mean they did get in touch with this hospital and I think maybe they would have done that anyway or not. But they eventually got in touch with this hospital. And I think the hospital in question definitely advised that they adapt her treatment. The treatment that they were giving [my partner], they were saying was right, but they could sort of complement it by adding certain other things. So I don't know whether that was procedurally correct for me to do that or for this guy to talk to me. But at that stage I didn't care. I would have talked to anybody and paid whatever or done whatever to talk to people that would have given me advice beyond the advice I was getting just from the hospital I guess. I just didn't know whether that was a done thing or not. But I think it was a positive ultimately. |
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He felt the nursing care his partner received was fantastic, that the nurses worked well as a team and that he couldn't thank them enough for all they'd done.
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We've sat and talked loads about how we can't thank them enough to be honest. And I don't think that you can, I don't think you can really. It's like, you know, both [my partner's] dad and I tried to sort of, we were taking big crates of Coke and chocolates and various things for them as much as we could, but it just seemed immaterial at the time. And it's now sort of thinking, what I was told by the doctors, it was so close for [my partner] that, I could be sat now, on my own still massively traumatised. And because of them, I'm totally convinced that the Intensive Care nurses in particular and also obviously the doctors largely saved [my partner's] life. And to sort of buy them a box of chocolates every day and a crate of Coke or something like that, well it just doesn't seem enough. Especially when you work in a world that is, purely commercial and you see what little, the very little things people do and what they expect to be rewarded for it, compared to what those guys do and the level of reward directly they get from their salaries and what they get from patients and relatives, it is nothing.
I mean I just assume that they must get so much reward hopefully from people like [my partner] popping in and other patients popping in and saying, “Thank you very much”. Because, I suppose life can go various different ways, but if it had gone the wrong way... I mean I suppose just in keeping [my partner] going, they make such a massive impact on so many people. And I don't know, I'm sure they do recognise it, but I'm sure they must get sort of like, used to it I guess, like a trader gets used to selling shares or whatever. But, I hope to hell they don't. Because it's, I suppose most people you talk to will say their partner, their relative that was ill is such a brilliant person. But, [my partner] touches lots of people in really positive ways. And, I mean I was sending countless text messages every single day, and emails, communicating with so many people about how she was. And, it would have been shocking if anything negative had happened. And it was down to those guys that it didn't.
The only thing else that I could say is that I cannot speak highly enough about them at all. And I mean again some of them, well, only a couple actually, maybe their way is different. But, they were, I remember sitting there a lot and thinking, “God, if I could have my office working as a team like this, like the group of nurses work as a team, the efficiency in my office would improve so much”. And also the ambience and things like that. It was just such a team spirit and such a team, working together just as a team should. It was fantastic. |
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He'd never written letters to his partner before but, when she was in ICU, he felt moved to write them and later gave them to her.
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Did anyone keep a diary at this time?
I was writing her letters every now and again, but not a strict diary. It was just that when something happened, I'd write a letter and through the whole period it's probably only seven or eight pages of typed letter. I mean it, with the benefit of hindsight maybe a diary would have been a helpful thing. But I didn't think about it at the time. I didn't really want to get tied to writing a diary every day. It was more writing stuff down when I felt like it.
Do you do this often?
No, never.
Or it was only during this time that you felt…?
Never, never write any, it was only that time that I felt, you know, we sort of send each other cards all the time and stuff like that, but never really write letters to each other or stuff. But this is the only time I've sort of kept or written regular sort of thoughts down and stuff. I think [my partner] sort of gets them out every now and again to have a read. |
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His partner stayed on a ward for one night before moving to a private hospital, where he felt she would get more care and support.
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She was moved to a general ward in the hospital. And the guys and the nurses had said it was going to be a shock. Because as I say the nurses in Intensive Care were fantastic and the level of care was fantastic. And having a large number of people for a small number of patients inspires confidence anyway. Going to the other ward, where I think we moved from having one-on-one or one-to-two nursing care, we went to one nurse for every nine patients and in a ward of twenty-seven. And again it's absolutely no disrespect to those nurses either, because they did the best job they could possibly do, given the resources that they had but they were under-resourced. In my mind they were less qualified than the Intensive Care nurses as well. So, you know, I think it was a real culture shock to be honest. It was like going from a 5-star hotel to a very, very low-level B & B.
You know, to the stage where, when [my partner] went to the other ward, she could hardly walk anyway, she was walking with a frame. She hadn't been able to go to the toilet, the proper toilet on her own, or she had been able to but not on her own. And simple things like going to the toilet were an ordeal. I think one of the nurses said to us, “Listen, you can't just ring the bell when you want to go to the toilet, you have to plan ahead. So think ahead of when you need to go to the toilet and then ring the bell”. But it's like, there's a girl who's been in Intensive Care, asleep for three weeks, she's been in Intensive Care for four weeks, and doesn't really, struggles to, not necessarily remember her name, but is still, the amount of sedation she had was so high that, she did talk nonsense for, probably about, well, probably about a week and then she'd ask the same questions just to reaffirm things for a long time. It took her a long time to get her brain muddle sorted.
But I mean to cut a long story short, she did a night in the general ward and then we, fortunately we have private insurance, so we took her then to the neighbouring private hospital. But again still missed massively the sort of quality and level of care that you got in Intensive Care.
Did you get the same level of care in the private hospital?
No, no. I mean I don't know if you get the same level of care anywhere else other than in Intensive Care to be honest. But, you know, the Intensive Care nurses were popping in, sort of somebody would pop in every day anyway just to say, “Hi”.
Into the private hospital?
Into the private hospital, on their lunch and stuff. Which was really nice. |
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He valued the support outreach nurses had given him and his partner before she was admitted to ICU and would have liked more support from them later on.
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The big hole I think that was left was, you know, I think more than anything when [my partner] came out or when she woke up, she could have done, well, we both probably could have done with a lot more support at that stage. Because I was trying to answer [my partner's] questions as best I could. But it was really, and I remember saying to [my partner] so much that she really could do with some counselling. To sit down and have someone sit with her and [my partner] talk and ask the questions that she was asking me, but someone who she knew was qualified enough to answer, rather than someone who'd just sat in Intensive Care for four weeks and had been given a crash course in pneumonia. And that never happened.
And that was, I mean [my partner] would meet with the consultant that was in the private hospital looking after her, who was also covered the main hospital as well. And again, very, very nice guy, very, very qualified and, you know, inspired loads of confidence in what he was saying and doing, but he couldn't give [my partner] much time. And that was a big hole I think, and if -
So that, that was after she came round, after she left the HDU?
I think whilst she was in HDU to a degree as well but particularly when she left, there was definitely a need for someone to sit with her and sort of say, “Well”. Someone sort of like the outreach nurses at the start, but doing something like outreach at the end, is sort of just sitting down and saying, you know, “You've been through this, you've been through that. This is what's going to happen now. It's going to take you a long time. You shouldn't get pneumonia like this again”. You know, that's something that goes through her mind on a daily basis, “Am I going to get this ill again?” And, you know, that needs to be, that answer's been given to her on multiple occasions, but it needs to be reinforced. So, you know, that was another big hole I guess. |
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His partner regained physical strength quite quickly and is back to work but still asks questions about her time in ICU.
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The hardest problem is that we're in a flat where she had to get fit for the stairs. And it took her about a week to get her fitness levels up so she could easily go, not easily, but comfortably go up sort of sixty steps. Then came back here. And, you know, I took about a week off as sort of proper holiday and spent time just with her and just on our own trying to get things back together and support her really.
Was there anybody else here?
No. I looked after her for the first sort of week and a bit. Then my mother, my mum came and looked after her for a week. And she made a fairly rapid recovery really. I mean she got her fitness back quite well. I mean she was walking quite well and managing to sort of do more and more on her own over a period of time. It's sort of now really, where she's at another level and she's struggling again. Because it's like anything really that you try to do. You pick it up quite quickly at first, but then to sort of refine it and move it forward it takes you longer.
Is she back to work full-time?
No. Yes, pretty much back to full-time. I mean we work together. So I mean she's probably doing a good four-day week now. But she's exhausted. I'd say she's pretty much back to full-time. I think within a couple of weeks she'll be full-time. But we have quite a long commute in and out of town. So that adds potentially three hours to the day. So if we didn't have that, she would be full-time I think.
I mean in some ways it's like whilst [my partner] was in Intensive Care it was more traumatic for me and her parents than after. Because when [my partner], she was asleep, she didn't know what was happening, whereas we did. Whereas now she's got to rebuild everything. I mean when she came out of or was woken, she couldn't sit up, she couldn't walk, she couldn't stand up, she couldn't do anything on her own.
Was she having hallucinations?
Yes, she had some pretty good hallucinations as well. Which we remind her about quite often. But it's harder for her now I think than it is for us. So sort of my life is getting back to normal quicker than [my partner's]. Because I've got my normal life back now. I've got my girlfriend back and she's living with me, we're building our house and doing all those things. Whereas she's sitting there thinking, “God, I'm tired and shattered after two hours at a computer screen. And I can't run, I can't walk, we can't do sport” those kind of things. I guess she's about 80 per cent there really. And I mean mentally she's back to the way she was. I mean she's still got lots of questions and anxieties I guess. |
