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Intensive care: Patients' experiences

Discharge and moving on

People who have been in the intensive care unit are usually discharged to a general ward when doctors consider that they no longer need such close observation. People are discharged from the general ward when they are strong enough to look after themselves or be looked after at home. People admitted to ICU because of planned surgery often spend only a few days in ICU and on a ward, and then leave. People admitted to intensive care as emergencies tend to spend longer in hospital. They may be very weak when they go home but no longer need specialist care. Some of them go to a rehabilitation unit after the general ward; others go home directly. Here people talk about leaving hospital after being in intensive care.

The National Institute for Health and Care Excellence (NICE) recommends that:

"when a patient is well enough to leave hospital, s/he should have an assessment (called a functional assessment) to identify any physical, sensory or communication problems, emotional or psychological problems, and any social care or equipment needs that s/he may have. The healthcare team should consider how the results of the assessment could affect a person’s daily life when s/he leaves hospital. Rehabilitation goals should be discussed and agreed with each patient (and their family/carer if they agree). The healthcare team should organise any referrals for further care or rehabilitation before the patient leaves the hospital. The patient should be given a copy of their critical care discharge summary, which is a letter sent to the GP with details of the patient’s critical care stay and the contact details of the person coordinating his or her rehabilitation and rehabilitation plan. A member of the healthcare team should make sure the patient (and family/carer if appropriate) understands what his or her  continuing rehabilitation will involve and what other things s/he might face during recovery after hospital discharge"
-NICE CG83 (2009).

Rehabilitation after being in a general ward
After being in intensive care and then a general ward, a few people were transferred to another hospital or specialist unit with rehabilitation facilities. Here they received extra care and treatment before going home, including physiotherapy and occupational therapy. Occupational therapists (OTs) help people improve their ability to perform tasks in their daily living or working environments. This includes helping people to dress themselves, cook and eat. Everyone admitted to a rehabilitation unit needs extra support to become more independent, for example with their mobility if they'd had an extended stay in ICU or because they were very weak even before needing intensive care. Before patients go to a rehabilitation unit, a multidisciplinary team, including physiotherapists, doctors, nurses and occupational therapists, assess their needs. An occupational therapist may even have visited the person's home to see what aids they might need to help them when they are back home, such as stair rails. Some people we talked to knew about this process, others didn't. Patients and their families may feel anxious about the transfer to other areas of the healthcare system. How long a person spends in transitional care varies, depending on how much support he or she needs. Some people talked about their experiences of rehabilitation and how they'd been encouraged to regain both physical and mental skills, using Zimmer frames, memory exercises, puzzles and other tools.

 

He thought rehabilitation hospitals were for the elderly but soon adjusted and made excellent...

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Age at interview: 68
Sex: Male
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Here I am, I'm 68 years of age, not feeling 68, mentally certainly not, having this concept that the hospital I'm now going to go into, the community hospital, is for aged people, who are taken from their rooms each day into either the dining room or to the day room with a television blaring in the background that nobody's watching, everybody goes to sleep. I'm generalising here, but this is the impression I got, that I observed on the occasions that I did visit.

I went into the community hospital only able to walk with a Zimmer and two weeks later I only had one stick, which is when I came home. And you think, "That's impossible." No, they know what they're doing. 

There are some splendid physios around. Even though I was disappointed that the intensity was not there that I thought there should be. Well, they knew what they were doing. They pushed my body as far as it was capable of being pushed. And I remember saying to my family, "I am fourteen steps away from home". And then later on saying, "I am eight steps away from home." And two days before I actually did come home, which was on the 15th of April, I said, "I've done it." 

So the challenges which seem, I think I used the expression the Everest, the mountain that you'll never ever climb, the impossibilities become possibilities and realities. And even though the body is still weak, you've got to drive it. And that's another lesson I learnt at that interface between being in the community hospital and coming home is the mind, in my instance, was far more advanced in recovery than was my body.

 

She described having her first bath in months at the rehabilitation hospital, and the time she...

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Age at interview: 57
Sex: Female
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I went there because, obviously, it's allowing you to have a bath. They'd bring this special chair along and sit you in it, an electric chair, a hoist thing, and take you and then put you into bath, which goes up and down. And as I remember, oh that was luxury, oh that really, that was bliss, that was. A bath after about well three months, nearly four, two months for me, two months for me, a bath it was lovely. 

In that six weeks, did you have the chance to talk to other people there as well...?

Yes, yeah, yeah, obviously with the cottage I was in, it was really mainly for older people, but, you know, by older people, I mean people in their seventies and eighties. But because of my disability anyway and the fact that it was taking me so long to get my strength back, they felt it was a good place for me to be. I didn't feel too bad because there was another young lady came along after awhile as well. But I mean, as I say, you know, they all may be in their seventies and eighties, but some of those old dears could give you a run for your money [laughs]. And there were some of them had dreadful, wicked sense of humours. They really, really did, absolutely marvellous, they really did. 

 

He sometimes felt frustrated when his progress was slow but a huge sense of achievement when he...

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Age at interview: 33
Sex: Male
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The rehab unit was great. It was a very structured environment. I didn't really understand why they got me to do some of things they did, tests that made no sense. But I just put that down to the fact they were doctors and I wasn't. So my time there was quite structured. I'd have an hour doing occupational therapy in the morning, which went from filling out a questionnaire about how independent I was before falling ill to where I was now and where I hoped to be in the future.  

They would then get me to stand in a standing frame to try and build up the strength in my muscles and play solitaire, which I've still not cracked so if anybody knows the solution, that's a good thing, to playing with wooden blocks and puzzles to get your brain and your co-ordination working together. 

In terms of the physiotherapy, that was really quite intensive. Within my first week there, because I was born with cerebral palsy, I remember saying to the physio, "Well hang on, stop trying to correct what was there before, I just want to get back up on my feet and walking the way I was." Because at least I could walk. And she was quite a strong character and she said, "Look we're trying to do the best for you, so if we can correct some of the problems you had from your previous illness, then we'll do that at the same time." So I sat corrected and over the next three months she and her team did a phenomenal job, frustrating at times because you don't see progress every day and you think, you want to get better, you want to get fit so you're up and standing etcetera. But you can't and I found that very frustrating.  

It was something that people just sort of, you know, stop trying so hard and just let your body do the work. But the amount of progress I made in what was a relatively short period of time, was phenomenal. Taking your first steps again, firstly in the hydrotherapy pool and then actually with a frame and then, you know, without the frame and walking arm in arm and then independently, the sense of personal achievement and happiness was absolutely phenomenal. It's indescribable how good it felt being up and walking. 

One man we spoke to had recently been discharged from a ward and was back home He was waiting to go to a rehabilitation hospital where he would be cared for during the week and return home at weekends. In the meantime, his wife and district nurses were looking after him, and he was pleased to be at home for a while before going back into hospital again.

Discharge from the ward and going home
Before someone is discharged from hospital, medical staff will have discussed their needs and made a discharge plan. Each hospital follows guidelines and will discharge patients only when doctors feel patients are well enough to manage at home with the help of relatives or by themselves. Most people need to be well enough to walk and climb stairs before they can go home. Physiotherapists and other medical staff check and ensure that a patient can do these before discharge.

Most people we spoke to were discharged after being on a general ward where, with the support of physiotherapists and other staff, they regained enough strength and mobility to be considered well enough to go home. Many people said they had been uncertain about how strong they'd need to be before they'd be allowed home and when that would be. Several said they had asked doctors, nurses and physiotherapists when they'd be allowed home, and didn't know who would decide and on what basis. One woman had been discharged from a High Dependency Unit because her partner could look after her at home. Others were allowed to go home when they were strong enough to walk up and down stairs in hospital.

 

She asked to be discharged and was allowed home because her husband was off work and could look...

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Age at interview: 47
Sex: Female
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Well, it was me that asked to be discharged really. And after pleading with the consultant he finally said, well, I could so long as I was looked after twenty-four hours a day. I'd begun to walk a little bit with two people assisting me. And I learnt to eat by myself, which had been quite a feat in itself. So I managed to eat myself. I could just about wash my hands and face when I came home. My husband stopped work and, he hadn't been working anyway because he'd been staying at the hospital when I'd been so poorly. So he just didn't go back to work, and stayed at home with me for about two months I think, and did practically everything for me. And I've just taken my time and learnt to do things again.

Some people said that, before they could be discharged, an occupational therapist assessed what their needs at home would be, such as hand rails and bath aids.

 

He was angry when his first appointment to visit his home with an occupational therapist was...

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Age at interview: 66
Sex: Male
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And eventually all this came together, I went to a meeting of Community Services in a room near the ward and I was planned for going on a home visit where the occupational therapist would assess me for suitability for going to my flat. I live in a sheltered flat and that was a great help because they knew that I had a red string I can pull for assistance, for emergencies. And the day appointed came to go home and it was cancelled because they hadn't booked the right transport and they hadn't asked the right person's permission. I was absolutely beside myself, I was livid. And I asked to see the Head of the Service, and the Head of the Service of Occupational Therapy came to the bedside. I said, "Look you've looked after me very well while I've been at this hospital but now you've made a cock-up, what are you going do about it? To get a patient to the stage were they're dressed and waiting for the ambulance to go home for a home visit and it to be cancelled.' I said, "I think it's terrible." I said, "And I hope you'll take notice of that." Eventually I came on a home visit and eventually I was able to come home.

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. One woman, a nurse, said she had discharged herself because she felt she'd recover better at home.

 

After talking with the doctor and some tests, she discharged herself because she felt she'd be...

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Age at interview: 35
Sex: Female
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About two o'clock I think they did finally get the consultant down to come and see me and I said to him, "Look, I want to go home, I don't care what you got to say, I'm going home today." That's how I said it to him, you know. And he said to me, "Well, ok, let's review the situation." 

So he said to me, "Are you drinking?" I said, "I'm drinking plenty." And in other words I was drinking lots of water but the drip had been taken down. My urine was clear in the catheter and so he said to the midwife yeah, take down the catheter, so I was walking, mobile though I was in discomfort I was still mobile. I was doing everything for my son so I said to him, "Look I just need to get out of this place." So then he said to me, "I feel that you need to have some sort of psychological assessment." So I said to him, "I don't feel I need to have any psychological assessment. What I feel I need to do is to go home, have a shower, get some sleep. I haven't slept for four days. I've just had major surgery, double major surgery. How would you feel being in here, haven't slept, major surgery, you keep pumping me with this bloody morphine that I'm reacting to, and you're telling me about psychological assessment." I said, I'm not interested in psychological assessment." And he saw I was very serious so he left that.  

So he says to me, "Well you still have a bit of an infection." I said, "You can give me tablets for infection I can take at home, pain that I'm feeling you can give me some analgesia I can take that at home, there's no reason for me to be here." I've got major support, my mum is there, I have a fifteen-year-old daughter, my sister's there, my husband's there. I have friends who are willing to come and do things for him while I'm at home so it's not like I'm going home to do everything by myself, I'm not." I said, "I've got a network of support, let me go home." So he said, well he's a bit reluctant to discharge me, to let me go home because he doesn't know whether there's going to be complications, I suppose. I don't know what he was thinking, he didn't say. He would have liked me to stay in a bit more to sort of observe me. To make sure that I am eating properly, that my bowels is working properly. Obviously he worried about those complications, which at that time I didn't understand but on reflection I did understand his worry. So he said to me, if I want to discharge myself I can. He can't keep me here but I'd be going against medical advice, but he can't discharge me. He'd like to keep me in for the weekend till Monday.  

So I said, "Well, then I'm going to have to discharge myself because I feel, for my own sanity, I need to be in my own environment.

A few people said that, when they were discharged, relatives took them home from hospital. Some were disappointed to have no help to gather belongings, carry medications and arrange transport.

 

His wife collected him, but they would have liked some help from hospital staff with carrying his...

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Age at interview: 47
Sex: Male
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There I was, hardly able to walk. I could walk, I had a stick at the time, so I wasn't that bad. But I was very, very weak. I mean I'm not detracting of that. I had twenty-four boxes of build-up drink. I had all my medication. I had my various bits and bobs that I'd actually had bought in to me. And I was on fourth floor, third floor. The car park was approximately, walking-wise it was probably about 500 metres. And I asked one of the nurses if they had a trolley or a chair to like assist me to get there. "No." "Oh." Now there was a 16-year, and I can't remember her name, that really annoys me, there was a 16-year-old work experience girl. She said, "Are you okay, [participant's name]?" I said, "Yes." I said, "I've just got to try and work out, because [my wife's] coming for me..." 

So [my wife] came for me. I said, "But I've got to work out how to get all this stuff down to the car." I said, "Now obviously I can't carry a lot of it." She said, "I'll help you." I said, "Well, let me try and work something else out." I said, "But like if, . . .". She said, "Well, I leave at 3 or 3.30". She said, "But, you know". She said, "If you need me, just let me know, and I'll help you out." I said, "Thank you very much." I said, "That's lovely." But as it happens we, [my wife] actually spent about four journeys going up and down in the lift to take this stuff downstairs while I went off to have a shower, so that I was clean to go out and what have you. But I have to say that that ward, and I can't say all the staff, there were three brilliant ones, there were three brilliant staff, but the rest of them were pretty mediocre. 

 

Doctors agreed to discharge him after talking to his wife, and he surprised his children by...

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Age at interview: 46
Sex: Male
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Anyway I said is that, my Mrs come up and said, "What's up with him now?" He said, "Well his lungs are alright but we'd like to keep him in a bit longer." She said, "What for?" So she kicks in saying, no what you can do to his leg he can go home, this is at nine o'clock in morning, she's going mad, she wants me home. So they get me up, doctor says, "well if he can walk upstairs, can he come home or not?"  

So physiotherapy, she were a nice woman, takes me to these stairs and I knew I'd get up the stairs. It was alright you know, it were hard but I got up. So she decided that you can go out, doctor come, lung doctor yeah I'll see you in hospital outpatients. Leg doctor come, "Well, well." She says, "You can do that at home can't you? Yeah, we'll have a nurse come and see you bathe your leg at home." She stayed all day till five o'clock, they signed everything and I was out, she were determined to get me because there's nowt they could do for me plus it were making me ill, iller being with other people when I've you know. 

Me brother come picking me up in car. The Mrs phoned him up, we were out, well the porter with wheelchair, crutches to car, car to here, walk down the path with crutches but didn't tell the kids, you know, I'm coming home. So when they opened door, "What you doing Dad?" They were very surprised with everybody so it were right funny oh you know, because nobody had tell them I'm coming home, well I didn't know myself did I?

Some people talked about their feelings when they first came home, after having been in hospital for some time. Others described how family and friends welcomed them.

 

He felt very emotional when he came home and was unprepared for adjusting to being with his wife...

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Age at interview: 68
Sex: Male
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I was away from home for three months. And I really hadn't rehearsed how I would cope with that re-entry into my own home. And I was very emotionally charged, I wept unashamedly when I came in. And even now as I'm telling you that I'm feeling the emotion welling up within me. So it doesn't disappear. You just, I'm grateful to all who supported me, the nursing staff. But I cannot overstress the importance of having your own support network in the form of family or friends. They are vitally important.  

I still get very frustrated. I still find that, if I sit too long, yes, my legs are much stronger, my muscles are coming back, but I will seize up if I sit down more than half an hour. When I come up to stand and start to move again I think, "Good grief, you know, come on, get lubricated." 

Another danger in coming home, yes, I'm talking about the re-entry, it's about living with your wife again. We'd been living apart for three months and nobody gave any guidance or thought as to the problems that that readjustment would cause. I couldn't have done it without the understanding of my own wife. I couldn't have done it without my own spiritual faith and belief. That gave me a lot of strength. And in that respect we've spent much more, forgive the expression, quality time together as a husband and wife, that in the normal busyness of life, we sort of passed and did our own things. But we've been forced because of the physical limitations that I'm currently experiencing to spend quality chunks of time together.  

 

He lived in a retirement home and all the residents lined the pavement and waved when he arrived...

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Age at interview: 66
Sex: Male
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So you'd been in hospital for how long?  

It was about ten weeks. I was missing for ten weeks, and all my friends here, all the elderly ladies and people here were all very worried and very concerned about me and they were all lining the, all out on the pavement when the ambulanced arrived and waving. 

Welcoming you back home, that's nice.

And I remember it well because it's quite difficult to be, I'm second or third from the baby in here, I'm sixty-seven and there are people here of ninety-three.

Last reviewed August 2018.

Last updated November 2012.

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