Intensive care: Experiences of family & friends

When he stood up, there was a rush of blood from his head which caused him to faint, every time he stood up in the intensive care unit. So he had to be very careful about that. His memory at that time wasn't operating at all so he wasn't able to remember that he shouldn't be standing up on his own. And the healthcare assistant basically said to him to do as much as possible for himself! 

So twice on the first day of being admitted to the single room, he fell over. Once I was in the door way so I wasn't able to get to him first of all and then I wasn't aware that he was going to be doing this. And then somebody visited him in the evening and when I was saying goodbye to his friend at the door, my son then tried to put himself back into bed because you know, he had to do as much stuff for himself [laughs]. And of course, as soon as he gets up he collapses because the blood' I can remember sitting in the main hall of the hospital that night because I'd been with him all day and I can remember, it was late at night, and I can just remember just bursting into tears and saying to my husband, 'I can't be here twenty four hours and I can't keep him safe'. And knowing that we were going to go home and he could fall, so that was actually quite traumatic. 

It was circumstances, you know, and I'm quite sure if he hadn't had the MRSA, he would've been in with everybody else, and other people would've kept an eye on him. It's unfortunate that he contracted that. And you know, I mean, he'd gone to a ward where they had orthopaedic patients coming in, so the last thing they needed was somebody with MRSA coming in to their ward. So you know, you can understand the conflicts that were there. But it was a horrible feeling because I knew that he wanted to do as much for himself as he could. He been told to get on with it and I knew he wasn't safe. And I also knew that if he fell over and banged his head again, there is that secondary impact where it's so much worse. And what frightened me was that if he banged his head, the swelling would be out of control. It would start a chain of events, basically he would kill himself because you don't have to hit your head very hard the second time for it... so that that was quite frightening. I didn't like that at all. 

And how long was he there for? 

He was there for about five days.
 

I don't know what the solution is to be honest but I have a suggestion for when people come out of ICU, when they're having twenty four hour monitoring and they are wonderful people. They must earn a fortune and they are worth every penny they get. They should have another ward where these patients are taken and put into another ward for at least a week, to be monitored, not twenty four hours as they have been, that would be totally impractical. But with trained staff knowing what they've been through and knowing what to look for. And then after that if it's necessary for them to go further, they then go onto the main hospital because I really believe, I do really believe they there are patients that come out of ICU, having fantastic care and die in the main hospital. And I believe that. 
 

We had the impression the general ward were not aware that she had come from Intensive Care. They must have known that. But there was very little, initially at any rate, very little support for her on the general ward. 

Yes. So your wife went onto the general ward. And what were your main thoughts and concerns there? 

I think we were concerned, my son as it happened came down at that point, and I think we were both concerned that the difference in support for her from being in Intensive Care and onto a general ward was such that she really felt isolated. In fact I telephoned, I said that she had had a colostomy and we'd got to know the stoma care nurses well, I telephoned one of them and said, 'I'm not really asking you to help in a medical professional capacity but just as a friend.' Which she did, and gave support to my wife. 

While she was on the ward? 

When she was on the general ward. Things improved rapidly over the next two or three days. I think initially there was this lack of support and of realisation as to how serious her state of health had been in the previous few days. 

What were your main concerns there? 

I think the lack of, as we saw it at any rate, the lack of communication between the staff in Intensive Care and the staff on the general ward. We had, we did see, my son and I did see the consultant registrar. And I think after that things did improve. And from that point on there was good care on that general ward. 

What were the main things that you were concerned about with the nursing care there in the general ward? 

We felt that the nursing staff saw my wife as a frail old lady. In fact she's very far from that. Not realising that she was in that state because she had come from Intensive Care, or seeming not to realise that. The fact that she couldn't even hold a cup. She was given a drink but was unable to hold the cup. And that was not appreciated.
 

On the 8th of June, no, before I go off to when he came out, several sort of niggley things happened that I was a bit cross about. 

There was one when he was on a catheter. And he had some visitors and it was really beginning to fill up, you know, the top half of the catheter was really beginning to fill up. So I thought I ought to go, before his other visitors came around, get somebody to see to it before they came. So I went down and spoke to a sister on the main desk and I asked you know, told her that this was happening. And I said, 'Is it being monitored, you know, is his output being monitored?' And she said, 'No, no, no, don't worry, just release it'. And so I did. I went back and released it. And the evening went on and visitors came and went. 

And the next morning, I was there when the nurse came in and said, 'His output is not very good, you know, we're concerned about his kidneys, would you please make sure he drinks and drinks and drinks'. So I'm shovelling drinks into him. And then I thought, they must be monitoring his output otherwise how would she know that. So I went to get the nurse and I said, 'You know, excuse me, last night while I was here, I went to speak to a sister about [my husband's] catheter being filled up and she just told me to release it. So I said, 'Whatever was in the top of there which was full, I just released into the main bag'. 

So she came back into the room and she worked it all out and she said, 'Oh don't worry about it, everything's fine, don't worry'. So you know, that could have been a potential problem if they'd thought that there was something wrong with the kidneys. It's all communication, isn't it? Total lack of communication.
 

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.
 

Because he'd become more and more depressed as time went on, we got to see the registrar at the hospital and he was should be moved to a room on his own, so he could get more rest. [My husband] has explained that since, the whole experience was unreal to him. He described it as being in the film The Matrix where everything in his life was artificial, and anything unfamiliar or contradictory to him was terrifying. 

He had no memory of the accident and there was a big gap for him of almost three weeks in his life that he couldn't explain. At the time I had no idea what was going through his head, but his mood swings became more frequent and were difficult to cope with at times. He hadn't seen his consultant for a while and was really keen to start some more physio to improve his strength. I just wanted to really know what was going to happen and get an accurate prognosis. I'd gone in on the Monday morning after his parents had gone back home for a few days and tried to speak to somebody that would be able to tell me anything. But I didn't really get any answers so that made [my husband] really frustrated. 

Because of the deterioration in his mental state he'd stopped taking some of his painkilling medication. Because he was now in a room on his own some of the nurses hadn't noticed he hadn't been taking all his pills. So he was getting a stockpile. Which we were obviously quite concerned about him taking, because he desperate by his situation in hospital. It was after that that he asked me to help him leave the hospital. I had severe doubts about this and I wanted to speak to someone about it. His parents were not there. He insisted he wanted to go there and then. It was sort of emotional blackmail I suppose you could call it, if I didn't help him then he said he would injure himself by trying to do it later on, in the night. 

So despite my uneasiness I did help him to leave the hospital. We just gathered up things really quickly and, still in his pyjamas, we left the hospital. We mentioned to the nurses at the station on the way out what we intended doing, so they wouldn't think we'd got lost. They insisted that we wait for a doctor to discharge us. [my husband] said he would wait. But he didn't and had no intention of doing so because he felt that he'd be restrained and have to stay there. It was just his mental condition at the time.
 

We would have, personally would have found it useful to have had a contact name, a contact person on the general ward. So that when we did have concerns, I think I said, my son and I, we had to almost demand to see the medical staff, the doctors, the consultant registrar. But I think had there been a contact person on the ward, as there was in oncology, as there was with the stoma care nurses. We didn't have that personal contact. I think that would have been a useful thing. 

Someone who you could just ask questions to? Or a telephone number if you were at home -

Yes, yes.

- and you had a question that you could phone? 

And someone who would then respond to that, or pass the question on, yes. 

Did you ever come across any outreach nurses there on the ward? 

No. 

So really someone that, when you've got questions, you know who to contact either by telephone or in person because you're there at the hospital? 

Yes, yes, yes, that would have been useful.
 

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.