Intensive care: Experiences of family & friends

The ward environment and nursing care

Patients are transferred from the intensive care unit (ICU) to a general ward when medical staff decide they no longer need such close observation and one-to-one care. For both patients and relatives this move is an important step in the ill person's progress from being critically ill to recovering. In the UK National Health Service (NHS) general hospital wards are very different from intensive care, the biggest difference being fewer nurses to look after many more patients. Instead of each patient having one dedicated nurse as they did in ICU, each nurse in a general ward may be responsible for caring for up to nine patients. Nurses can be called with a buzzer by the bed but may not be able to come straight away. Both patients and their relatives can find this difficult if they have become used to intensive care. 

Here people talk about the general ward environment and nursing care. Experiences ranged from those who found this an extremely difficult part of the patient's time in hospital to those who were glad the ill person was moved from intensive care on to the next stage of recovery.

The ward environment
The transfer from ICU to a ward had been a big and often worrying move for both patients and relatives. For many patients the move followed days, even weeks, of being unconscious either as a result of an illness or injury or because they had needed artificial respiration. During these early stages of recovery patients were usually extremely weak and unable to do very much for themselves. They had lost skills and confidence and often could not walk, feed themselves or even reach for the buzzer to call a nurse. Some people felt that the patient hadn't been prepared for the busy atmosphere of the ward and had wished they hadn't been moved until they'd felt better able to cope and look after themselves. They worried about leaving them on the ward when they were so weak and immobile and consequently completely dependent on nurses for all their care (see our section on Intensive care for patients).

 

Her friend was scared about being on a busy ward and having to do more for herself when she was still very weak

Her friend was scared about being on a busy ward and having to do more for herself when she was still very weak

Age at interview: 37
Sex: Female
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She was terrified going onto the surgical ward. She cried. She had tantrums. She had panic attacks. She felt safe. I think that was the big thing. She felt safe where she was. She was plonked, as she says, onto a surgical ward where the staff, there wasn't as many staff as there was in the high dependency and they had loads of things to do and they had twenty odd other patients to see. [My friend] felt very isolated because at that point she was managing to get out of bed into the armchair with the zimmer but needing two nurses because she couldn't stand. She could stand but she wasn't steady. And she was either lying in bed or sitting in the chair for hours at a time and she was frightened. 

And she kept saying, 'The nurses didn't understand'. But they did understand. It was just that they also understood that she needed to be doing more for herself and that it was a busy surgical ward that she'd gone onto. And that they didn't always have the time to sit and chat to her about how she was feeling or what she wanted.
 

"Before a patient is discharged from critical care, s/he should have another health check (short clinical assessment) to identify any physical or psychological problems. If the health check shows that the patient could benefit from more structured support, s/he should then have a more detailed health check (comprehensive clinical assessment) to identify his or her current rehabilitation needs. The healthcare team should talk to each patient about their rehabilitation goals and rehabilitation programme, both of which should take into account the results of the health checks and be tailored to their individual needs." (NICE CG83 2009)

Many people said their relative, partner or close friend had found the ward busier and noisier than ICU. Some patients had found it difficult to sleep and relatives had worried that this would hamper their recovery. Some said they'd found it worrying when the patient had moved to a ward that didn't specialise in the patient's condition. This was especially the case when patients had head injuries or conditions affecting their brains. They were extremely anxious about leaving the patient unsupervised when they had not fully recovered and could easily fall and injure themselves. These relatives felt the ill person still needed 24-hour care. Some other patients, who were ready to be transferred to rehabilitation units where they would receive more intense, specialist support, had to spend some time in a general ward before a bed became available (see 'Hospital discharge and rehabilitation'). 

 

Her son had to have his own room because he had MRSA but she felt he was in danger of injuring...

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Her son had to have his own room because he had MRSA but she felt he was in danger of injuring...

Age at interview: 58
Sex: Female
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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.
 

 

She felt her husband needed specialist support for his brain injury but wasn't getting this on...

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She felt her husband needed specialist support for his brain injury but wasn't getting this on...

Age at interview: 66
Sex: Female
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After two weeks he was discharged from ICU and went on to, well what I thought was a holding ward while waiting to get to the rehab unit. But unfortunately he was there for a very long time. It was actually a chest ward and [my husband] really didn't have the type of care he needed. He had good nursing care. We've no complaint about that but he just seemed to stagnate there. He had very little physiotherapy. He had very little help in sort of neurological help, in fact in some ways he was neglected on that ward because they just did not have the facilities to cater for him. And he was being tested for swallowing and so on because that [my husband] would have to be helped to put in his dental plate. He and the speech and language therapist used to come in the morning. [My husband] was never able to actually chew food although when I used to go in, I started going in every day at 12 o'clock and staying with him until half past eight because I felt he wasn't really receiving the nutrition. 

Things were not very good. And I was getting more and more depressed over the situation because in some ways [my husband] was improving but in other ways he wasn't. He wanted to be able to walk and he was getting out of bed but unfortunately because he hadn't had physiotherapy he hadn't actually taken any weight on his feet from the 19th of November until the 14th of December. But of course he really wanted to be able to sit up and walk but because he was having minimal physiotherapy, so much so actually that the senior physiotherapist advised me to write to the head of inpatient therapy to see if anything could be done. 

And at that stage I just felt [my husband] has been through so much, he has cost the NHS so much just keeping him alive and still he just cannot get this, the extra little push which might, you know, get him home from hospital. And we were just getting more and more frustrated waiting day after day, saying well when is he going on to the, you know, the rehab ward. And they kept saying, 'Well there isn't a bed available yet'. But from, [my husband] sat in a wheelchair for the first time, he was hoisted out of bed for the first time on the 14th of December and by the 16th of December he was actually walking with the Zimmer frame. He was just more than ready for it. And from then, things just improved so dramatically from then on.
 

Many relatives felt frustrated because the ill person wasn't receiving the support they felt he or she needed in order to recover, and that this was hindering their progress. Several, who worried that there was such a marked difference between the ICU and the general ward, felt that all hospitals should have High Dependency Units (HDUs), where patients would receive less care and support than in ICU but more than on a ward.

 

She wished all hospitals with ICUs also had HDUs so that intensive care patients would not have...

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She wished all hospitals with ICUs also had HDUs so that intensive care patients would not have...

Age at interview: 58
Sex: Female
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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. 
 

 

Her husband was improving but became dehydrated and developed a kidney infection, which set him...

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Her husband was improving but became dehydrated and developed a kidney infection, which set him...

Age at interview: 66
Sex: Female
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During a lot of this time [my husband] was very agitated and not deliberately but he seemed to pull out his canulas because he kept, he'd thrashed his arms around a little bit and his favourite way of lying in bed was actually lying sideways with his legs over the side of the cot. And, you know, the canulas kept coming out with the result that then they left the canula out and [my husband] was receiving very, very little fluid. He actually contracted kidney problems, although my daughter who is actually now, she's one of community matrons locally, she pointed out that he really was showing the clinical signs of dehydration but they kept saying, 'Oh we'll wait for the blood test'. With the result that when the blood test came through, the results came through, [my husband] had you know quite a bad kidney infection. And he went on antibiotics for that and had a very bad reaction to that. He came up in a rash, got the most horrendous diarrhoea and he was just tearing himself because of the itch. And this happened like coming up to a weekend when there was really very few doctors available and in the end just one of the nurses took very kindly, she actually sent down to the children's ward to get some calamine lotion for him. 
 

Nursing care
In ICU, patients receive one-to-one care by specially trained nurses but on a general ward many more patients are cared for by fewer nurses. Some people said they'd been anxious about leaving the patient when they were on a ward because nurses wouldn't be able to attend to the ill person whenever they needed something. Visiting on the ward, compared to ICU, is more restricted and many found this difficult, especially when the patient had been extremely weak and immobile, often too weak to press the buzzer to call nurses, feed themselves or go to the toilet. In some cases, where patients had been so weak they hadn't been able to move or feed themselves, relatives had asked if they could come in and help, fearing that the patient wouldn't eat at all if nurses hadn't got the time to feed patients individually. Some, who'd had long distances to travel, also said they'd been allowed some flexibility in terms of visiting. 

 

They were disappointed that nurses were not doing more for their son and she ended up feeding,...

They were disappointed that nurses were not doing more for their son and she ended up feeding,...

Age at interview: 51
Sex: Male
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Mother' He was also nursed by healthcare assistants. Again there was one who was very good. And others who just, 'Oh, don't you want your cup of tea, dear?'

Father' There was a -

Mother' And they just left him. 

Father' There was a tendency for them to bring him a cup of tea and leave it on the table. And obviously he couldn't move, so he couldn't feed himself. Therefore it got cold -

Mother' The cup of tea got cold. 

Father' -and then they'd take it away. 

Mother' Yes. 

Father' The outcome of this was that in fact we were, although the visiting hours for the ward were quite limited, like in the afternoon, we actually had permission to go in at any time to feed him and to help them with his care. 

Mother' At that point he was still quite agitated. He couldn't vocalise except to growl or roar. So when they tried to do something with the catheter he would scream the house down. He wouldn't allow them to feed him. So they said would I go in and do lunch as well as dinner. Which of course I would. Because they'd at that point taken out the nasal-gastric tube, but he was only adjudged by the speech therapist to be able to swallow liquids. So he was being fed milkshake and things like that. So the weight continued to plummet. And it was only as days went by when he was just fed liquid, and then days went by when he was fed mush, until he got on to some proper food. And then I could start taking food in. Because the food was abysmal. The nursing was abysmal. The hygiene was utterly abysmal. We complained to the nursing staff about the fact that I could leave at 8 o'clock, 9 o'clock at night, having fed him, changed him, washed him, got him comfortable and settled, and go back at 10 o'clock the next morning to find nobody had washed him, nobody had given him anything to drink, nobody had been near him. They hadn't changed him. Nothing. 

And when I said to the nurse-in-charge or the staff, the sister, 'Look, this is not acceptable' she said, 'Oh, but he's so sleepy. So we thought we'd leave him till you got here'. So he was eight weeks on that ward. And every day, every day, I went in before 10 o'clock in the morning, stayed till at least 8 o'clock at night, and worked as an unpaid healthcare assistant, just looking after one patient, whom I fed, bathed, changed, washed, watered, amused, talked to. And it was hell. 

I knew which strings to pull. I knew which bells to ring. I could go to a general manager and say, 'Look, this ward is absolutely the pits. It's not good enough'. And she severely kicked people. So that suddenly we were told, 'Well, yes just come whenever you like. You don't have to wait till visiting time. If you want to come in and feed him, please do. If you want to come in and do this, please do'. And it was because I knew who to turn to and say, 'Look, this is just not on'. 

Father' I think that's the thing that maybe someone needs to think about is, that step from Intensive Care to High Dependency is quite small. High Dependency to a ward is just abandon. 

Mother' Yes. 

<
 

Because his wife was too weak to feed herself and the nurses were too busy to feed each patient...

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Because his wife was too weak to feed herself and the nurses were too busy to feed each patient...

Age at interview: 66
Sex: Male
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They sent her straight down onto the main surgical ward and the first night, well first morning, she was there somebody came along and just plonked a bowl of water down in front of her and expected her to wash. And on this particular occasion she couldn't even lift her arm off the bed clothes let alone sit up in bed. 

She had got no energy left at all this time and eventually they took her into a side ward because they realised that she wasn't quite ready to go out onto the main ward. But even on the side ward, the people when the meals came round they would put it on the table and push it in front of the patient. And obviously she couldn't reach the food to eat it. One particular day after a couple of days, I happened to come along. It was still meal time and they used to let me creep in as long as I didn't make a noise, you know, I could go in out of visiting times. And I noticed that there was food all the way down the front of her and I asked her what had happened to her and she said, 'Well I was trying to get some food down but I can't reach. I can't pick the spoon up'. And she had got it all down her. So I started to feed her then and she was quite hungry. I told the nurses the problem and they said, 'We just haven't got time to individually feed everybody. So, you know, if you would like to come in, you are more then welcome to help feed her'.
 

 

She visited her husband on the ward every day so she could feed him and make sure he was eating...

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She visited her husband on the ward every day so she could feed him and make sure he was eating...

Age at interview: 66
Sex: Female
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Until the speech and language therapist could check him for chewing and swallowing, he couldn't, he well he just couldn't be given a meal where he needed to chew although he'd eaten, he used to eat, he used to eat quite chunky stuff that I took in when he had his dentures in but, you know. He just , well he couldn't you know. 

Were you told when the speech therapist would come and have a look or were you just kept waiting? 

No she came, she did see him quite frequently and actually she was very concerned about [my husband] because over and over again on his chart it was saying, you know, he had sort of one spoonful full of porridge in the morning and simply because they did not have time to feed him, the time. It took a long time. It used to take me half an hour to get his main course in and I used to keep his lunchtime dessert and feed him that an hour later and likewise for his evening meal. It was time-consuming. But we happened to be, my daughter happened to be with [my husband] when the gastroenterologist came because the speech and language therapist had voiced her concern about [my husband's] nutrition. And he came really to assess him to have his tube, I can't remember what they call it, [laughs] straight into his stomach. And [my husband] was, I was feeding [my husband]. I think he was having yogurt with lots of chunky bits of fruit bits in it and he said, 'He doesn't need help'. Well I said, 'I know he doesn't but he, you know, I come in to feed him lunch but he's not having any breakfast or anything else. So then he decided that [my husband] did not need this treatment and I think he did voice concern. 

Then he said, because I said, 'I'll come in at 8 o'clock in the morning to get [my husband] breakfast if that's what it takes'. And he said, 'No', he said, 'That shouldn't be necessary in a hospital, for family to have to come in'. So I think he said that a chart had to be kept of everything that [my husband] had, including sips of water and all the rest of it. And the nurses had me to fill in this chart as well, everything that he had to eat. And of course, there was no question of [my husband], he just started to perk up after that. It was really.

And put on weight? 

Yes and put on weight, you see [my husband] was not receiving enough fluid because it took a long time to get, I mean I used to get those squeegy bottles of Ribena and literally squeeze it into his mouth because I think he had he had almost lost the ability to'. Well I think sucking is a very difficult function for an adult [laughs] and he just was not coping with it. And I mean urine output was very, very low and of course he just, he was having sips of water really and that was it.
 

Some people felt that nurses on the ward had unrealistic expectations about how much patients could do for themselves. They suspected that these nurses knew little about what these patients had been through in intensive care but that they had been prepared to give more support once they'd realised how weak and debilitated the patient had been. Many said that, at first, nurses would leave food and drinks on the patient's table, not realising that, at that stage, the patient hadn't been strong enough to lift a cup or cutlery or to feed themselves. Clearly some nurses had been better and more helpful than others. One man said his wife was unable to do anything for herself on the ward and had felt isolated but that after he had been able to talk to the doctors about her situation, things improved. 

 

He felt his partner's mother was transferred to a ward too soon and if her husband hadn't been...

He felt his partner's mother was transferred to a ward too soon and if her husband hadn't been...

Age at interview: 38
Sex: Male
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I think she went to the High Dependency first, which the care is obviously not as severe as Intensive Care. It's a stage down, isn't it? I just feel that the nurses are not trained as much. Because you can see the difference from when she goes from Intensive Care to High Dependency to a normal ward. I don't remember a lot of her in the High Dependency Unit. I can't remember how much time she spent there. I mean the next thing I remember is they moved her to a ward and put her in a room. We were once again not informed of like, you know, 'Was she out of the woods? Was she recovering? What's happening?' As I say they might have told [my partner's father], but we were pretty much kept in the dark. 

But to see her in the side ward and, you know, you'd go in, and I know everyone's busy, but it's the little things I remember. Like they'd bring her a drink with a straw. Now you've got to remember she couldn't sit up or she hadn't hardly moved and that. She was getting movement back and she was talking and everything, but there'd be, you know, a cup on the side with a straw, which they'd left there, you know. And she would be thirsty. And I feel she was moved out of the High Dependency Unit or Intensive Care too quickly. It was as soon as, you know, she was capable of breathing properly and she was moved out. But how can someone be moved out when they can't drink for herself and eat for herself? You know, I understand a lot of it's to do with relatives. As I say [my partner's father] done a lot, [my partner's father] would fetch the food, [my partner's father] would give her her drinks and that. But when [my partner's father] wasn't about, you know, there wasn't really anyone there, you know. 

And I remember a few times there'd be a drink on the side when I went in. And it's because [my partner's father] would have taken a break and gone for something to eat. And, you know, [my partner's mother] would want a drink but she couldn't press a button, you know, she couldn't do anything. And the people come round and put the drink on the side. Which absolutely appalled me in a sense. 

 

He felt there was a lack of communication between ICU and ward staff but, once the nurses on the...

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He felt there was a lack of communication between ICU and ward staff but, once the nurses on the...

Age at interview: 67
Sex: Male
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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.
 

Some people said the patient had sometimes waited what seemed an extremely long time for things they'd asked for or needed. A few people said the patient had occasionally missed out on meals. Some said they'd often had to go and look for nurses because the patient had needed something but there'd been no one at hand to help.

Some felt that the ward nurses, who were less highly trained than those in ICU, were too busy to provide adequate support to patients who were so debilitated. A few people felt that, because staff had been so busy on general wards, there hadn't been enough time for them to be properly briefed about each new patient.

Some people felt there was a lack of communication between nurses on the ward working different shifts, and one woman felt that several of the problems her husband experienced were due to this.

 

Her husband had problems with his catheter and she felt that better communication would have...

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Her husband had problems with his catheter and she felt that better communication would have...

Age at interview: 58
Sex: Female
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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.
 

Some people felt extremely disappointed in the care on the ward, having got used to the nursing care in ICU. Some had been able to pull strings to ensure better care. For instance one or two people who'd known health professionals working at the hospital had contacted them and managed to get the patient transferred. One woman's husband was on a ward before being transferred to a specialist hospital. She rang her brother who worked at the hospital and asked him to speak to doctors so her husband could be transferred as soon as possible. Two people said they transferred their partners to a private hospital, where nurses would have more time for each patient. Both felt that the patient could have benefited from more psychological support at this time as well as physiotherapy.

 

She felt more reassured when her husband was transferred to a specialist hospital, because he was still very weak, confused and needed a lot of care.

She felt more reassured when her husband was transferred to a specialist hospital, because he was still very weak, confused and needed a lot of care.

Age at interview: 49
Sex: Female
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Then he went out of the intensive care then and down onto the ward and we, like I said, we were waiting for a place to come up at [the second hospital]. And he was on the ward for a day and a half and I got there at 11 o'clock on the second day and I phoned my brother that night and I said, 'You've got to get him. You've got to take me to [the second hospital] I don't want him there. He's not to stay there. Take me to [the second hospital] tomorrow. He's not staying on that ward. It's disgusting'. 

So anyway he took the day off work to take me to [the second hospital] the next day but I went into [hospital name] onto the ward and as I got onto the wards, the registrar came up to me and said, 'We've got some good news. [Your husband's] being transferred to [the second hospital] tomorrow'. Oh no it was that afternoon. So I said, 'Oh that's good'. And then I followed the ambulance that he was in to [the second hospital]. And then I stayed in [the second hospital] for a week in the nurses' quarters there. They were a bit like a'

Was it a relatives' room? 

No it was like, it was like hotel but it was just like nurses quarters but it was for relatives. You had to pay to stay there. Yeah. 

So he was in the general ward of the first hospital for a couple of days? 

Yes. 

What was your main concern when he was there? 

Well I just thought that he wasn't being looked after and after being so seriously ill and coming through so much, I used to go then. You never saw a nurse. They were just too busy. There was, they were just all student nurses on the ward. There was too many people. He was in a side ward again because he had this MRSA and there just wasn't enough people to look after. There wasn't enough qualified nurses to look after somebody who'd been so poorly. And I didn't think he was getting, it's not that I wanted him to have loads of attention again but I don't think he was getting looked after at all properly there. 

Could he do anything for himself? 

No, no. 

And were you going there?

I was going there and helping to drink his tea. I shaved him. I washed him and then I'd go back at teatime, the same thing again. Make sure he had his tea and I'd sort the telly out for him. Suppose the nurses did go in and I think an occupational therapist had gone in there to see him. And [my husband] was still very muddled. He wasn't at all with it. He, you know, he was still. Up until days when he was in [the second hospital] he was still really. Obviously he had been sedated and heavily sedated for so long it, you know, they just weren't wearing off him. It must have took a week or two weeks to wear off him. 

So then he was transferred to the other hospital?

To [the second hospital] then yeah.

So I knew he was safe. So I was sleeping better then. And because I knew he was safe and because I knew that I'd been to the hospital and it was, it was spotlessly clean and when you see so many nursing sisters floating round. And there were still student nurses there but they seemed, they weren't harassed. There was more nurses to less patients. There was, you know, probably about eight patients, ten patients on [my husband's] ward whereas in [the first hospital] there was about 30 odd patients to those four nursing staff that are up there. So that's why. It wasn't their f

 

His partner stayed on a ward for one night before moving to a private hospital, where he felt she...

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His partner stayed on a ward for one night before moving to a private hospital, where he felt she...

Age at interview: 35
Sex: Male
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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.

 

After several bureaucratic problems, he was able to transfer his wife to a private hospital, where she would get the physiotherapy and psychological support she needed.

After several bureaucratic problems, he was able to transfer his wife to a private hospital, where she would get the physiotherapy and psychological support she needed.

Age at interview: 66
Sex: Male
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When she was transferred to the general ward it was like chalk and cheese. It is absolutely unbelievable. And you are so elated that she is coming out of Intensive Care, that she is on the road to recovery. That is all you can think of. And then you go to the general ward and there isn't the level of nursing care. There is ignorance, in the true sense of the word, about the condition of Intensive Care patients. There is not the level of medical cover for the patient. The mix of patients is so dramatically different that it can be off putting and there are articles written on this, there is evidence to prove that this is the situation. And it really is. 

And people leaving Intensive Care, I mean the evidence is there, even after seven days the amount of muscle loss that people have is incredible and after 49 nights, I mean she was physically a wreck, she couldn't walk or do anything. There was no proper physiotherapy on the general ward, she was given a Zimmer frame with no instructions, no support how to use it. There was no assistance to get her to the bathroom or anything like that at all. She had to struggle out of bed to sit in a chair if she wanted to because she was encouraged to get out of the bed. There wasn't any visit from the physiotherapist except for a flying visit which had to be organised. And there was no psychological input into trying to guide her through from the transition problems that she was facing after being in Intensive Care. And the enormous amount of sedative drugs that she'd been on which do affect them, which we now know. So there was none of that at all in the general ward and I think that is a fair criticism of most hospitals up and down the country, talking to patient groups about this, the transition between the two is so dramatic it can have very serious consequences in terms of patient recovery. And it was the situation there to the extent that I arranged for my wife to be moved out of there fairly quickly. 

But before I could do that, it was unbelievable the hurdles I had to leap through. She was transferred to the general ward under the care of a renal physician. She was in Intensive Care for respiratory problems. So to a simple logical mind she should have been transferred to a respiratory physician. But no, because on the day she came through A & E there was a renal physician on take and she went back to him. The renal physician had done ward rounds about two hours before my wife was admitted to the general ward and didn't come back for two days. The juniors were just running around like chickens with their heads cut off. So I couldn't get the renal physician back to check her out, anyway she said it is not my area of expertise, you need to speak to the respiratory physicians. So I tracked down the respiratory physician and got one of the nurses in critical care to lean on the respiratory physician to come and see her, who did a couple of days later. And as far as he was concerned, from a lung point of view, she was fine and she could go home. But the renal physician would have to clear it. So basically we got the renal physician in, so she cleared it and my wife was transferred to a private facility which provided physiotherapy and psychology. And the physiotherapy was geared particularly to functional respiration to get her back to normal. So she was there for ten days being treated privately. 
 

For some relatives and close friends the patient's transfer to a ward had been especially difficult, not only because the ill person had been extremely weak but also because he or she had been confused or hallucinating. Some of these patients had wanted to discharge themselves or for their relatives to take them home. A few people said the patient had become very depressed on the ward. Others felt that patients had felt isolated because of the restricted visiting. One man became so depressed he made his wife take him home that very evening. Doctors discharge people only when they feel they are not at any risk of deteriorating. Some people, though, choose to leave hospital without being formally discharged. This is not usually recommended because a person may have complications or problems at home. This could hinder recovery or lead to new problems and, sometimes, re-admission to hospital. 

Some relatives were keen for the patient to be discharged because they felt they would recover better at home (see 'Supporting and caring for the ill person at home'). 

 

Her husband became so depressed, she was so concerned about him that she agreed to help take him...

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Her husband became so depressed, she was so concerned about him that she agreed to help take him...

Age at interview: 39
Sex: Female
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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.

Outreach Services
Outreach services aim to enhance the care of ICU patients on the wards and make the transition easier. Outreach nurses also aim to reduce the risk of re-admission to ICU from the wards and to share their specialised nursing skills with other staff in the hospital.

“Many hospitals now have an outreach team of intensive care trained nurses and doctors who follow up intensive care patients on the ward and address any specific issues they can help with. This ensures that there is as seamless a transfer of care as possible.” (The Intensive Care Society)

A few people recalled being visited by outreach nurses. One man praised the support he and his partner had received from outreach nurses before his partner had been admitted to ICU and wished they'd seen them again afterwards. Other people hadn't recalled seeing outreach nurses and one woman felt that the one she had seen had been unsympathetic. One man said he would have valued having a specific person on the ward who he could contact to ask questions and discuss his wife's progress. 

 

He would have liked to be able to contact one specific person on the ward who would be able to...

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He would have liked to be able to contact one specific person on the ward who would be able to...

Age at interview: 67
Sex: Male
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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.
 

 

He valued the support outreach nurses had given him and his partner before she was admitted to...

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He valued the support outreach nurses had given him and his partner before she was admitted to...

Age at interview: 35
Sex: Male
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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.

Making steady progress
For some people the patient's move to a general ward was associated with making progress and seen as an important step in the right direction. Some relatives and close friends said they'd quickly accepted that there were fewer nurses to patients and recognised the benefits for the patient in having to do more for themselves. Several noted that, although the care was more personal and 'intensive' in ICU, they understood the constraints on the ward and on the UK National Health Service more generally, and accepted that the wards were bound to be busier, have fewer nurses per patient and were often 'under-resourced'. But, overall, these people said they'd been satisfied with the care and had focussed on the patient's recovery, some saying they'd felt grateful for all the care and treatments the patient had received.

 

She felt that, although the nurses were very busy, they did the best they could and were very good.

She felt that, although the nurses were very busy, they did the best they could and were very good.

Age at interview: 63
Sex: Female
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Did he have one-to-one nursing on the surgical ward as well? 

Not in the surgical ward, no. The surgical ward is a bay of three wards each containing five patients, and there is a staff nurse and auxiliary nurses. And in actual fact while we were there they were very short staffed and actually had to rely on agency nursing and, you know, I think it was very difficult for the nursing staff, because they had fifteen patients to look after in various stages of illness and really they didn't have enough staff I have to say. But I mean they did their best and they were very good. If you buzzed the buzzer they would come as soon as they could and with my husband, because he was on heparin and other drip feeds, when they run out, I sort of had to sometimes go and find them and say it had run out. And then once they knew, it was fine. 

One man felt that some of the nurses had been very supportive when his wife was on a ward and said they'd given them both lots of useful information. A few recalled how friendly the nurses had been and felt that the care had been appropriate now that the patient could do a bit more for themselves.

Last reviewed August 2018.

Last updated May 2015.

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