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Intensive care: Patients' experiences

Physical and emotional experiences

People are transferred from the intensive care unit to a general ward when doctors consider they no longer need such close observation. For many people, moving from an intensive care unit to a general ward in the hospital is an important step on the road to recovery. A big difference between the ward and ICU is that fewer nurses look after many more patients. Some people are transferred directly to a ward, others may go to a High Dependency Unit (HDU) first. Here men and women talk about their physical and emotional experiences while they were on a general ward.

Some people we spoke to couldn't remember anything about their experiences either in intensive care or on a ward. Others had felt 'hazy' and confused when they were first transferred, but most said they were fully alert by this time and able to distinguish between reality and hallucinations.

 

She still felt confused after being transferred and had to keep asking questions to understand...

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Age at interview: 23
Sex: Female
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What happened while you were there? Were you having physiotherapy during Intensive Care as well?

Yes. Because of my breathing, as well as movement, you know, mobility.

So someone came every day?

Yeah, every morning. Went to Ward 21. I couldn't, I was still really groggy, do you know, even all the surgeons used to say, 'Oh she's still groggy.' I used to like sit there and I used to say 'What', like, 'what time is it? What day is it?' I didn't, I forgot what day it were. I'd have a visit in the morning. I'd fall asleep and I'd wake up and think that they were still there. You know, 'Where's my visitors? Why aren't they here?' I used to wake up and shout my boyfriend or my mum. As if they was sat at the side of me. I don't know, oh God it was horrible. At one time I thought I was going daft, you know, I thought, you know, 'I'll end up going to some lunatic place', you know. I never thought I'd come, you know, come round and talk sense rather than nonsense, because that's all I did talk, nonsense.

Many people felt completely unprepared emotionally and physically for the general ward and had mixed feelings about the transfer. They felt relief and happiness to be well enough to go to a ward, but also fear and anxiety about being without the previous high level of support and care (see The general ward: care and environment). Moving from the ICU to the ward can also be a worrying time for relatives.

 

She was extremely weak and her family worried that if she needed anything during the night, no...

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Age at interview: 41
Sex: Female
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When it came time to go back to the ward, I mean I know in the past, in my experience, patients going to the ward, they go from one extreme to another. And I know relatives find it very hard and that was the case with mine as well. You go from being attached to all kinds of monitors and machines to just being in a side ward, in a ward, where nobody's even observing you. 

And I was changing ward and I was put into a side ward because obviously the ward staff thought I needed privacy but no, very upset and very distraught and I had lots of visitors and other staff and I was put into the side ward. But I couldn't even walk, I couldn't get up and sit in the chair by myself. I could feed myself by that point, but I couldn't get to the toilet, I couldn't stand up, I couldn't get to the sink. If my glass was on a trolley at the bottom of the bed I wouldn't have been able to reach that. So it was quite difficult and my relatives saw this and they knew that I'd gone from being in Intensive Care with my own nurse to suddenly being, alone really. And, you know, they were worried what would happen if I went off in the night, what would happen if nobody could, you know, I couldn't contact anybody so they were worrying about all those kinds of things. And it was quite daunting even for me even though I knew that that would happen, it was still quite daunting and, you know, frightening. And even if you did buzz the nurses, they were obviously busy. They couldn't come as quickly as they could on the Intensive Care Unit, you'd have to wait, which wasn't anybody's fault. But it would have been better if I could have done a bit more for myself.

Physical experiences
In the first few days and weeks after a period of severe illness in ICU, the slightest activity is liable to leave people feeling tired. This does improve, though how quickly depends on such things as a person's age, previous health, how ill they'd been and for how long. Many people talked about physical weakness and lack of mobility when they were first transferred to a ward, including being unable to walk, feed themselves and attend to their own personal care.

 

She was anxious about moving to a general ward because she was too weak to do anything for...

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Age at interview: 35
Sex: Female
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So then I got moved down to the ward which was very scary because, as I say, when I was in intensive care I had somebody there all the time. And it might be that they wandered off for sort of twenty minutes and didn't wipe my mouth as often as I might've needed it but basically there was somebody there all the time. Whereas on the ward there wasn't. And I was very scared because I couldn't do anything to get anybody's attention. 

So you know I arrived and the sister, who was fantastic, kind of came and welcomed me and sort of set me all up and said, 'This is your nurse and I'll be back tomorrow morning and this is how your bed works and here's the buzzer that you need to press if you need anybody.' And that was no good to me because my hands weren't strong enough to press it. And my arm wasn't strong enough to reach for it. So I felt really scared. It was like being kind of bound and gagged.

I mean that was the main feature of when I was back on the normal ward. I was no longer seriously ill but I was seriously physically depleted, for want of a better way of putting it, by the experience. And it was like having a window into either being a small baby or being a very old person. And I was faced with challenges that, as an active, you know, working mother in their thirties you'd never imagine that you'd have to be faced with so, you know, not being able to walk, not being able to feed yourself. You know not being able to go to the toilet by which I mean, you know, not being able to stand up and physically kind of walk the sort of the five paces from the end of my bed to where the toilet was. Not being able to wash.

 
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He needed support to sit in a chair and had crutches to help him walk.

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Age at interview: 30
Sex: Male
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You were then moved on to the general ward. How were you before then, because you were sedated for nine days. Were you quite weak when you came round?

Yeah, I was weak, yeah. Very weak. I had physiotherapy, a physiotherapist on ITU, and it was just basically to get out of bed. I had to sit down on a seat. I was so weak I needed support to do that. And, yeah, it was a case where I was really weak. When I went back down to the general ward, and I started to learn how to walk again, I needed crutches to learn to walk. I also had physiotherapy at the general ward as well and it was a slow recovery, but I made it in the end, so....

How were you transferred from ITU to the general ward?

On the bed.

On the bed.

Yeah.

So they took the bed there?

Yeah.

And you weren't walking by that stage?

No, I wasn't walking at all. Like I said, I was able to stand. I was able to sit down on a seat, but walking was done in the general ward. So it was like a case of going to the toilet and stuff - I needed to have like pans and stuff around the bed until I managed to get some strength to be able to walk.

And were you able to start eating normally again?

That was actually in ITU. It was in ITU. It was a case where - because I was, like, on a drip, water. When I ate solids it was going straight through me. So I was actually starting to eat in ITU, then I had bouts of diarrhoea. I was just losing what I'd been eating. But then that settled down within a few days.

Moving to the ward was frightening and worrying, especially for people who couldn't do much for themselves. Most were completely dependent on nurses for their care at first but, unlike in ICU where they had one-to-one care, on the ward there were fewer nurses to help them.

 

He had to balance his dependence on nurses with his own dignity as a person, and was pleased when...

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Age at interview: 68
Sex: Male
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It's a balance between maintaining your dignity and being pragmatic, you know. You can't do it. You are highly dependent on other people caring for you in a physical sense as opposed to a medical sense, and yet still wanting to maintain dignity. I recall, because they were short-staffed, that on one occasion taken out of bed into the chair at the side of my bed, I was hoisted by what can only be described as a hoist that you would use for bales of cotton or wool. And that's exactly how I felt. I'd lost at that point all sense of dignity and self-respect, or I felt that the hoist had deprived me of dignity and self-respect. And I said there and then, 'Never again am I going to allow myself to be hoisted in that fashion.' 

I didn't mind the hoist which sort of allowed me to hold on to a bar and lifted me up and I could straighten my legs. That was okay, that was acceptable. But not to be bundled up like a piece of baggage. It was important also to accept that some of the challenges I was set, which I didn't like, had to be confronted. I speak to you in these very personal terms because this is how it happened. I was dependent on using the commode, for people to clean me up after I had used it. And then there came a time when one of the nurses, a male nurse, who I thought was tough but very fair, I said, 'I need cleaning.' He said, 'Well, what are you doing about it?' And I said, 'Well, you know, you clean me up when I've used the commode.' He said, 'Well, I'm not going to do it.' I said, 'But I've forgotten how to do it.' He said, 'What do you mean, forgotten how to do it?' I said, 'Well, the last time I wiped my bottom was ten weeks ago.' 

He said, 'What would you do if you were at home?' He said, 'Would you ask people at home how to do it?' I said, 'No.' He said, 'Well, there you are then. Get on and do it.' And that was, that seemed like an Everest to me, you know. 'How am I possibly going to do this?' But I did. And that was such a significant step forward. That was a make or break point. And so that which seems impossible, you've got to say, 'Okay. Go for it.'

Many people also felt that the nurses in general wards were unprepared for how weak and 'debilitated' they were, often expecting them to be able to do more for themselves than they could (see 'The general ward: care and environment'). Often feelings of tiredness went hand-in-hand with lack of mobility and severe weakness. Sometimes these were related to an inability to sleep.

 

Nurses expected her to be able to wash herself but became aware of her weakness and needs with time.

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Age at interview: 47
Sex: Female
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That wasn't as good an experience as you think, going back to the ward, because I felt very neglected, having had a nurse at the side of me constantly and really one-to-one treatment and very specialised treatment. The nurses on the ward I think didn't understand or hadn't experienced people who'd been that poorly, weren't used to that on that particular ward. 

So that when I asked to have a wash they were saying, 'Well, there's a sink there.' And I said, 'Yes, but I can't walk, and I haven't had a wash on my own and I don't think I can do it.' And after a couple of days they got used to me and understood that I needed quite a lot of help. But I think at first they expected more of me than I could do. I think the handover was very much medical. 'She's had a trache and that's been taken out and she's on this medication and that'. But not particularly about, 'She can't wash herself. She can't get up and walk.' And so I found that quite difficult. 

And also the first night on the ward I can remember thinking I was going to fall out of the bed, because I was used to having the cot sides on. And the energy it took to actually ring the bell for the nurse, it must have taken me twenty to twenty-five minutes to work up that energy to press the bell. But I was frightened, not to go sleep because I thought, 'If I do, I'll roll out of bed.' And I eventually rang for the nurse and said, 'Could you put the cot sides up because I'm used to that and I feel I might fall out of bed.' After that, the same nurse was on nights every night and came and did that for me automatically. But it just needed me to do that the first night. 

But I did feel that maybe the handover could have been better and they could have, I think it could have been more human, you know, as far as more of what I could and couldn't do and what I'd experienced, rather than just the medical side of things.

Many people talked about the difficulties of being on a ward when they couldn't walk, lift anything or clean themselves while other patients around them were mobile and relatively well. Some had been extremely weak and immobile when they were first transferred, but gradually made progress. Sometimes progress was slow, but usually on a daily basis, with support from physiotherapists (see 'Physiotherapy on the ward').

 

Learning to walk again felt like a big step forwards and he always told his family how he was doing.

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Age at interview: 68
Sex: Male
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The greatest step forward for me was when I was able to be part-mobile, with a Zimmer frame. And you think, 'Good grief, a Zimmer frame. This is for old people.' No, it's for people who are determined to get better and to become mobile again. And that's another positive spin that you can put on the Zimmer. It is a means to an end, it is not an end in itself. 

And I recall vividly how each day I would report to my family when visiting took place the progress I had made. The first occasion was, 'To the end of my bed.' Then it was, 'Halfway across the ward.' And then it was, 'Moving down the ward.' And I would tell them to what bed I had made a journey, 'Bed number 4. Bed number 6.' And the furthest I got was to bed number I think 10' in a 24-bedded ward. That's before I was moved from the general ward to another hospital. 

Interestingly I felt that the physiotherapists were under tremendous pressure to do justice to what they felt by love compelled to do. They had too many patients to look after. Some patients responded well, and I couldn't understand why patients who were mobile chose to spend all day lying down on their bed. And I, who wanted to be mobile, spent most of my life sitting in a chair, desperately on occasions wanting to get into bed, to be hoisted into bed, and not knowing how to do it. At least mentally knowing, but not knowing if physically I was strong enough to do it. 

Some said that, while the move to a ward had initially been unsettling, they soon adapted to the new environment. Several talked positively about being on a ward because it was a sign of progress. They'd become less dependent and more independent, were more alert, mobile and stronger. Learning to walk again, being well enough to have a shower, to feed themselves, lift their arms and legs, were important steps for most, though one man recalled that, although he improved, he was unable to go home because he needed an operation.

 

He was looking forward to going home but was transferred to another hospital for an operation.

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Age at interview: 37
Sex: Male
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Well basically what happened, first time I went in Intensive Care, I came out, I think it was the eighteenth of December and I went to just a general ward and I was thinking right, once I'm out of Intensive Care, that's it. I'll sort of be home by Christmas, which obviously I wasn't. I stayed for about a month on a general ward where they were getting my mobility back. I was going up and down the actual ward, just with a Zimmer Frame thinking right, that's the worst bit over, you know, I'm back on the road to recovery. 

But they were actually, they still hadn't determined whether to do an operation. Then when they decided 'yes' we need an operation. There wasn't an ICU bed available in the hospital, which is why I then got transferred up to another hospital to the HDU unit. And that was just to really stabilize me. 

Then I got transferred to a normal ward because they thought well we don't have to operate just yet. Again, as I say, I went up eighteenth of January up to the new hospital so for about a month I was HDU, normal ward, back to HDU and then approximately on the eighteenth of February, I had the operation which obviously, all I recall on the HDU, was a central line being put in. And that was it. And then again waking up in Intensive Care unit.

Did you go through any low points while'.?

Yeah I mean you, the thing is, as I say, once you're leaving Intensive Care you think well I'm out of there. I'll be home you know by the end of the month and then they say, 'no perhaps you need an operation', perhaps you need that, and then get transferred from my local hospital up to London, which again puts the worry in me that I'll then want people to come up and sort of come all that way to come and see me.

Emotional experiences
Many people felt better emotionally when they saw themselves improving physically. Signs of progress were important 'milestones' along the road to regaining strength and going home. Some people recalled feeling emotional and 'weepy' when they were first transferred, sometimes because of their weakness or lack of progress. Hospital stays were more difficult for those who had young children and missed them. Upon improving, one woman was allowed home to see her young son during the day and came back to hospital at night.

 

She felt weepy having had surgery but knew these feelings would pass because she'd had them before.

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Age at interview: 43
Sex: Female
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One thing I would say, and it's happened to me before with surgery, but it's particularly true after Intensive Care, I think something like three days after when I still had, sort of when I'd gone back onto the ward, obviously the general ward, I was terribly, terribly weepy and not because I was in pain or I was worried or anything, I just, and it has happened before, and because it's happened before, I wasn't sort of like, 'Why am I crying?' and, 'I don't know why I'm crying,' sort of thing. I mean I wasn't, not when anybody was there, but just I'd suddenly start crying and I wouldn't know why. So I think, to be aware that you might, you know, it's generally the anaesthetic and the drugs and everything can make you do strange things [laughs] that you wouldn't normally do. And just not to, you know, this will, this too will pass, sort of thing.

 

She had to rebuild her strength to do normal daily activities and missed her new baby.

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Age at interview: 35
Sex: Female
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When I was still in hospital I was still so preoccupied with those kind of things that you know at the time were incredibly important because they were just the basic fundamentals of how I was going to get strong enough to get out of the hospital. But were actually so far removed from, you know, what you needed to be able to do in everyday life to get on with everyday life. You know just all the little choices that we, you know, just to get up and get dressed and get ready to go out to work in the morning. You know, get out of bed, have a shower, get yourself dressed, make yourself a cup of coffee and a bowl of cereal. Put your coat on. None of that stuff was within, you know, the realms of possibility for weeks and weeks while I was still in hospital. You know I was still working on the real kind of building blocks of being able to kind of sit up in bed in the first place, let alone get out of it and kind of get myself into a shower. It was a really, really long journey. 

And the other thing that was agonising was the fact that I wasn't able to see my baby. And was missing, you know when you look back on it two months is, you know, not a lifetime but it was a lifetime then. And I missed her first steps because I was still stuck in hospital and when I came out of hospital I was too weak to look after her. So we had to have full-time live in help for another four or five months until I was strong enough to be able to lift my own child and feed my own child and push my own child in a buggy, which was the kind of the lasting agony and the lasting trauma. 

Some people had felt bored, isolated or unable to concentrate while they were on a ward. A few had nightmares about death and loss of control.

 

He usually enjoyed reading but couldn't concentrate and felt bored.

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Age at interview: 71
Sex: Male
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And how did you feel throughout this time you were improving?

As I say never felt poorly in myself at all, you know. Obviously I wasn't right but I didn't feel as if I wasn't right. And it was just boredom more than anything else there. 

One thing that surprises me particularly and I'm still surprised by it because I've always been an avid reader ever since I was a little boy. Read everything. But while I was in, you'd think while I was in the hospital I'd want to read and I didn't want to read at all. My daughter brought me that The Da Vinci Code book that everybody raves about and I started reading it in December and I still haven't finished it. And in fact I don't rate it very highly anyway.

You just didn't feel like reading?

I don't know why I didn't read, I used to get the newspaper and I'd read the newspaper but as for books, everybody gets something, kept bringing me books all the time. I didn't read them.

What did you feel like doing because you were probably quite bored weren't you?

Well I was. Well I used to get out, spent most of my time out of bed. We had the television you know. I looked at the news and any sport and so on but everything else, you know, television was boring and poor really. And I used to get up and walk around really.

A few people felt a sense of achievement about being on the ward, knowing what they'd overcome and that they were improving. Some also wondered how their illness affected their families, particularly if relatives had far to travel to hospital or children to look after (see 'Impact on family' and 'Intensive care: experiences of family & friends'). Once they were improving, many felt eager to rebuild their strength and looked forward to going home.

Last reviewed August 2018

Last updated November 2012.

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