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Stroke

Early care experiences after a stroke

Admission to hospital

Most of the people we spoke to had been admitted to hospital following their stroke. However, a few with more minor strokes or Transient Ischaemic Attacks (TIAs) had attended the hospital stroke clinic as day patients or had mainly seen their GP. It is recommended that people with stroke-like symptoms should not delay but should phone 999 or 112 from a mobile and get immediate assessment at hospital (see 'Getting medical help' for the FAST test of symptoms that might be due to stroke).  Even for those whose symptoms have completely resolved when arriving at hospital, (those at high risk of a full stroke) will require immediate admission to hospital, and those at lower risk will be referred for urgent investigation in a rapid access clinic.

Admission into hospital was usually via Accident and Emergency (A&E). It is recommended that people who have a stroke are admitted immediately to an Acute Stroke Unit to receive comprehensive specialist stroke care. This happened to some people who were put immediately onto a ward specifically for patients with stroke. Others were not given immediate specialist care, but were temporarily put onto a general ward or surgical ward because of lack of a suitable bed. In some cases, there were long waiting periods. A woman who was initially put on a surgical ward found the experience very frightening because her stroke made her confused and she thought that she was going to need surgery. A man who was left on a surgical ward for a week felt he was not receiving proper care. He complained and was eventually moved. 

 

At first he was put on a surgical ward but felt he wasn't getting the proper care so complained...

At first he was put on a surgical ward but felt he wasn't getting the proper care so complained...

Age at interview: 69
Sex: Male
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The next doctor came, he checked it again and he said, 'I'm sorry, you are not going home, you've got a stroke'. He told me at that time' Then they do not have a bed there in the Infirmary, you know. They took me there to some ward' It was not stroke ward, it was something else, you know, some other ward, they put me there. Surgical ward' I was there in the Infirmary for 7 days without any medicine, without anything, without any care, you know. Then I talk to the doctors, say, 'It's not right. You're putting me in the surgical ward where people come hurt, you know, in the one night during fighting and tomorrow they go home and nobody looking at me, you know. 'Oh we are arranging, we are looking for the bed'. Then they took me to the hospital, you know, the bed was empty. They put me there, that's it and I was totally' unable to move, you know and in my hand or anything' That's what happened with me. 

Some were first put onto an acute ward and then were moved to a specific stroke rehabilitation centre which was sometimes in another hospital (see 'What happens now? Rehabilitation and care').

 

He was temporarily put on a general ward before being moved to the specialist stroke unit. There...

He was temporarily put on a general ward before being moved to the specialist stroke unit. There...

Age at interview: 60
Sex: Male
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So you were initially in an acute medical ward, is that right?

I was, was initially admitted to the overnight ward, the, what would it be? The accident and emergency ward for overnight I was then taken into a, to a normal medical ward while there because the, as I say, I had the stroke on the Friday evening, so I was admitted on a Friday night, obviously on the Saturday and Sunday the normal medical staff were not working and therefore I was not admitted to the, to the specialist stroke unit till the following Monday. So for the Saturday, for most of the Saturday and the Sunday, I was in a normal medical ward and received virtually no treatment at all. 

How were you in yourself? Were you able to move about?

No, I wasn't. I was, my right side was virtually paralysed. I mean, I could move my right arm to a certain extent but, as I said, it had a mind of its own so therefore I was helped to be fed. I, there are televisions in our local hospital and therefore I had a television set pushed in front of my nose, so I was able to watch the cricket. There was a test match on at the time. I was able to watch the cricket and not, because I was able to watch the television, I wasn't, I didn't mope, or didn't worry too much. I mean, there's not much that one can do. You're in bed, you can't move, what's the point in panicking and worrying? You can't do anything about it.

 

Although 999 responded quickly, Ralph experienced many delays afterward.

Although 999 responded quickly, Ralph experienced many delays afterward.

Age at interview: 69
Sex: Male
Age at diagnosis: 66
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So the ambulance crew came very quickly, within about 12 minutes I think. And they were in a hell of a hurry and they whisked me off to the hospital, wouldn’t even let me stop for a toilet (bag) which subsequently became a bit of a problem. I was just in the clothes that I stood up in, that was it. But then I got into the emergency (unit) I was put on a trolley and nobody looked at me, not even in my direction for literally hours until I eventually saw a doctor and she said, “We’ll book you in for a scan about three o’clock tomorrow.”
 
So what was all this urgency about? What’s the F.A.S.T. campaign about? You know. So that was the beginning of a rather unpleasant experience.
 
So continue on with your hospital experience.
 
Well I had my scan and somebody said, “You’ve had a stroke.” I said, “Great. I know I’ve had a stroke, the girl on the end of the telephone line says I’ve had a stroke. The paramedics say I’ve had a stroke. Thank you very much, I’ve had a stroke. So, what do we do now?” I was put on a general ward for about a week and then I was finally moved to a stroke ward, which was absolutely no different except that there were some other stroke patients there.
 
It was about a week before I had any kind of treatment, even medication. The likely scenario was never discussed. I had sporadic and brief physio sessions, but given no exercises or warnings about the effects of prolonged bed rest, etc*.
 
I never got off the ward until I was transferred to the stroke rehabilitation unit... so called. (In) which I had no rehabilitation whatsoever [sighs]. I’m sorry to be negative but there’s very little positive to cling onto. For instance, just simple things like, I mean, for a start I was kept in bed, flat on my back. And if I wanted to go to the toilet or have a wash or anything I had to have somebody wheel me there. I mean, after a while I got to the point where at least I could go to the bathroom on my own, if they would leave me alone. I had to appeal to the consultant and say, “Look, I can, I’m OK to do this on my own. And he persuaded them to let me do it, because I found it difficult doing things with people standing around watching me. So it was very unpleasant and there weren’t even practical considerations like, I mean, I had bladder and bowel loss of control (as you do). I was, as far as you can possibly get from the bathroom, in an open ward. I mean, surely, it doesn’t take a great mind to say, “Maybe we can move him down to (be), near the bathroom. Or maybe we can put him in a side room where, where he can take himself to the toilet.”
 
*text added after the interview by Ralph.

 

People we spoke to who were unconscious, or only partially conscious, after their stroke were usually put into intensive care or a high dependency unit. They often had little memory of this time, although a few had vague memories of conversations with friends and family. One man's daughter had kept a diary of this time which he found interesting when he recovered.

A couple of people had been overseas when their stroke happened. They had travel insurance and felt they had received good hospital care, although they found that relatives sometimes had to help with personal care in hospitals overseas.

Early experiences and memories of hospital

The first few hours on the ward was when many people started to realise the extent of their stroke and its effects on their body. A few people told us that they had tried to get out of bed, usually to go to the toilet, and had discovered that they were unable to move. Others commented on feeling that parts of their body did not feel like they belonged to them or felt like a cold lump in the bed. Some tried to speak and realised that other people did not understand them. This was a very frightening and confusing time and people valued the reassurance they received from the medical staff and from friends and family that what they were feeling was normal for someone who had had a stroke.

 

At first he was frightened about the impact of the stroke but was reassured if a little surprised...

At first he was frightened about the impact of the stroke but was reassured if a little surprised...

Age at interview: 56
Sex: Male
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Eventually I was moved from the Outpatients depart up to a ward where I was very, very upset at the time. I mean, I didn't know what was happening to myself. The nurses were very good. They did good but at the same time, I was confused. I was more or less confused than anything else and worried and, dare I say, frightened because, you know, my life had' I know then my life had changed from what it was. It was going to change dramatically and these things kept going through my head, how I would cope, you know, my wife, my daughter and my son. I mean, we had a routine. I retired early and I was more or less a house husband. My wife was still working but I was, I was enjoying my life. I had a dog to take out, things like that. My, my day was full and I knew then that it had changed but how much had it changed, I had never realised until 2 or 3 days later on' that, later on that day, my wife came back in to see me and I was in no fit state to really take in what was happening then medically. The doctors were seeing me but they, they would come back and take more tests and that and eventually the next day, I was moved into Ward 1 in the hospital... then I was lying there more or less feeling very, very sorry for myself, you know, as you do and I did break down and a nurse came to me and she said, 'Look [own name], you'll just have to either get up and get on with your life or lie there for the rest of the day' and I said, 'Well', to myself I said, 'Well, I'm not going to lie here. I still have a lot to go on'. 

So I said, 'That's it, OK. Well, I'll do what I'm told by the doctors and nurses and staff' and what surprised me was the second day after my stroke that the area rehab people come to see me and they said, 'We'll be here on Monday to help you, to help yourself get dressed and washed'. I couldn't believe this. I mean, I couldn't, I could hardly move my left side of my body and they were coming to show me how to get dressed and washed and shaved, things like that. I couldn't believe it but they said, 'We'll be there on Monday' and it's a pity that they, they lost the Saturday and Sunday. The 2 days were lost but they were there on Monday. Then the physio came and they said the very same thing 'We'll have you on Monday or Tuesday down to the gym' to get me going and I said, 'Well, you've got a big job on your hands', you know, but they said, 'We'll be there'.

Some individuals have very little recollection of their initial hospital experience if they were in critical condition. One man recalled a near death experience where he had a very close brush with death.

 

David describes a near death experience where his family is behind him and a white figure in...

David describes a near death experience where his family is behind him and a white figure in...

Age at interview: 62
Sex: Male
Age at diagnosis: 54
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If you can go back to the period that you know I was, out with the birds somewhere for about nine days.

 
During that period I remember very, very distinctly a period of time where I experienced whether you would call it an out of body experience or what. But my experience is that I was in a tunnel and at the far end of tunnel was a figure that was in a white robe and I couldn’t describe the figure because the figure was so far away from me. And I was in this tunnel, my family were behind me, and the figure was actually waving me on and saying, “Come this way, come this way.” And I can remember taking a few strides... to this figure and a few more strides. And I looked behind me and my family were still behind me and this figure looked to be just as far away. And this went on for, I don’t know how long it was. But as I moved forward, the figure, now I never got any closer.
 
And my family never got any farther, further away from me. And eventually I just said, “Nah I’ve had enough of this.” And I turned around and went back. And...
 
Back to your family?
 
Yeah. Yeah.
 
So I must’ve been very comfortable with them. But yeah. My family have been like a rock to me.

 

Start of the recovery process
 
Getting up and out of bed and moving around if possible is recommended as soon possible after a stroke (NICE guidance CG162 June 2013).  Moving around reduces post stroke complications which can be fatal. Most people we spoke to were helped to get going as quickly as possible, which was a surprise to some people [Interview 16]. A few, however, said that for the first few days they were confined to bed. Whilst it was sometimes suggested that this was because they were too ill, it is not recommended practice. A few commented that lack of staffing, or their first few days being over a weekend or holiday, had meant that they did not get going quicker and some found this frustrating.
 

Personal care and going to the toilet

Help with using the toilet and washing was a difficult experience for most people. Many described the experience as awful, degrading and embarrassing, although most recognised that it was just part of a stroke that they had to get through. One man commented that you leave your dignity at the door when you come into hospital. Others saw it as a challenge that spurred them on to recover. A few said it did not bother them or that they had previous experience and knew what to expect. 

 

Found it hard to get help with personal care and using the toilet and said that although the...

Found it hard to get help with personal care and using the toilet and said that although the...

Age at interview: 56
Sex: Male
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Thinking about your time initially in the hospital, you talked about, you know, having to get help to do things?

Mm hmm. 

I mean, thinking about maybe were you able to get up and go to the toilet or was that something you needed help with as well?

No. In the first 2 weeks, 2 weeks, yeah, I had to help, get help with a bed bottle, you know, the bottle and I had to go to the toilet, I had to get help to go there and in the toilet, cleaning myself, I couldn't do that, you know, that was, you leave all your dignity at the hospital door when you go to the hospital, you know, and don't get me wrong, the nurses were fantastic. They don't, they don't bother. I was more bothered than they were, you know, but dignity is a great thing to have and to lose it, you know, 'That's, this is not me' you know, and I was determined as soon as I could I would do these things myself, you know, go to the toilet myself and clean myself, things like that because it is a terrible thing if you're not used to it and I'm standing there and I've been doing these things, you know, I can't handle it, you know, I couldn't handle it and I said, 'It's not for me, I can't do this, I've got to get on with my life. I must'. Things like that. The, the bed bottles were OK. That was OK but nothing else. No. Not going to the toilet, no. 

 

He was not bothered about being helped with washing and dressing because he had previous...

He was not bothered about being helped with washing and dressing because he had previous...

Age at interview: 85
Sex: Male
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How about getting up to use the bathroom?

Oh no. The, the first, the first the nurse came with me for the first, oh, I think for the first, I could never' I could never shower myself while I was in the hospital. I always had a nurse to do it. Oh, you're, you'll not do any thingmies when you're in hospital, you know, you just, that's it. I tell you, you learn, you learn fast [laughs]. But it didn't bother me anyway because I was, I'd had many years in the army and I mind after I was wounded in the army, I couldn't do very much then either but however but the nurse came and she showered you and I remember the first time when I was in Ward 6 I said to the nurse, I said, 'Oh, I'd love to get a shower, a wash or something' and she said 'I'll get a lift' and they put you under this lift and they lifted you up and carried you and you over the bath and they dropped you into the hot bath. Oh, and it was heaven. But they couldn't, they couldn't have been better to me really not. Really was good. And up to, I think it was the last week right enough when I was in Ward 4 that I managed to go and shower myself. I did it the last week but you had to be so careful because it's slippery, you see. It wasn't, I think not because in the end I couldn't do it, you know, with my right hand I couldn't have done it but you're frightened you fall, you see, when your legs are not very good. And then it's trying to get, dry yourself, it's difficult when you're one arm, one hand at that time but, oh, I'm alright now.

Many people were initially unable to get up to use the toilet or if they tried were told not to. Men were provided with a bottle for urinating, which most found okay. Women, however, found that urinating in a bed pan or kidney dish extremely difficult and several told us about the embarrassment of wetting the bed or night clothes. 

Some people, normally those who had lost consciousness, had a catheter inserted, despite recommendations that catheterisation should be avoided unless there are specific exceptional circumstances. This had taken some people by surprise, because apart from not needing the toilet they did not feel the catheter. 

Bed pans or commodes were usually provided for bowel movements. Both men and women found this difficult and embarrassing. A few, however, said it had not been as issue as they had not needed a bowel movement for the first few days and put this down to the shock to the system.

Most also required some help with washing and dressing. Those who were bed bound initially received bed baths and some commented on how efficiently these were done. Others were taken to a shower or bath in a wheelchair. The first bath or shower people had was very much appreciated. 

 

She was hoisted onto a commode and eventually taken to the shower by a nurse which was a great...

She was hoisted onto a commode and eventually taken to the shower by a nurse which was a great...

Age at interview: 66
Sex: Female
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You mentioned there about things like using the toilet and were you also needing to have help with things like showering and washing and how did you feel about that?

Everything was extremely difficult because I wasn't mobile at all. I mean, you really, when you've had a stroke, you're just a dead weight and so they had this hoist which they, and they put me on to it and I was hoisted out of the bed onto the' I can't think of the word [laughter] now, that is something that happens even now, 7 years on, I can, my memory can just, my mind just shuts down completely and I can look for a word but the word won't come and so I can't tell you [laughter] I can't tell you what this word is but it was a portable toilet and I was lifted on a hoist onto the portable toilet and that was certainly a lot easier than the bed pan. 

But I was very lucky. There was a lady, a nurse in the hospital who'd actually worked in rehabilitation and she seemed to understand that I found things very, very difficult. She was Australian, but she was a very, very nice lady and I said that I felt I hadn't had a bath, I hadn't had a shower, I felt awful. It, it's a horrible feeling. You just feel very unclean and as if you don't want people to come near you because you feel you must smell and, and everything must be awful. So she really did understand and she said, 'I'll find some way to help you' and she found a chair with a hole in the middle and she got the hoist and she hoisted me onto this trolley chair thing with the hole in the middle and she took me to the loo, actually a proper, a proper toilet, which was absolutely, I can't tell you the feeling and she obviously understood and this apparatus just went straight over the top of the toilet and because I was sitting in a hole, which was absolutely fine, that was really good and so I was actually able, I felt, I can't, well, I can't describe to you how I felt. It was, it was absolutely wonderful. 

And then she also understood that I felt unclean and she said, 'I'll be able to wheel you in this trolley contraption down to the shower room and I think I can get you under the shower'. Oh, well, it was absolutely, absolutely marvellous and she did just that and I just stayed on this, this, this contraption and she wheeled me in, turned the shower on, I had a shower. It was absolutely wonderful, it really was. 

Others found it encouraging that they were quickly expected to start returning to doing things for themselves.

 

Found it difficult to be helped with washing and said it was a turning point when the nurses...

Found it difficult to be helped with washing and said it was a turning point when the nurses...

Age at interview: 44
Sex: Female
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Tell me about your experience of, you know, having to have somebody help you with washing?

It was horrible because the particular nurse, say, the particular nurse that did it wasn't a very friendly nurse. She was very young and she didn't chat. Some of the older ladies, as they're washing you, they'll chat and have a joke and a laugh and that's great and, and make comments and, but this particular, the very first time, I was mortified and I just couldn't do it and she said, 'Well, I'll come and bath you' and she made an odd comment and she went away and I just cried. I just laid there and cried and I thought, 'Nothing can be any worse than that', to have somebody, because I'm aware of what's happening obviously and then from then on, as I say, it, the next few times were easier and then gradually, they brought a thing of water to the bed and a flannel and some soap and the first day I washed myself in bed and I cleaned my teeth after about 4 days. 

It was absolutely wonderful and that was a turning point and then the next goal was I get into that bathroom and I have a bath, well, I had a shower actually. It was much easier to sit in the shower at first but I managed it that way and there were grab rails at the side that you can hold on to and the nurses will stand by. There's no chance of you having a fall. They were great. They give you the respect. They'll stand outside the room while you get your underwear on or off or whatever. That, to me, was just the first stage in a long recovery but it was such an important stage being able to keep myself clean on my own. That sounds silly saying that. It's something you take for granted every day. You get up and have a wash but you haven't got the ability to clean your own teeth and illness is something that had never registered with me in my life before and I think this is probably why it came as such a shock because I was a fitness instructor and very, very healthy. Had I not had that as, as my lifestyle up to that point in time, I perhaps would have found it a lot easier to adapt. 

The approach used by the person helping with personal care was important. People found it reassuring to be told that personal care was just part of the nurses' job. Others appreciated the nurses who were friendly and even chatty (see Interview 10 above). In contrast, people found it difficult when staff were uninterested or impatient. One older woman felt that nursing care was okay, but not as good as it used to be, but thought that this might be because nurses were expected to do some of the jobs that doctors used to do.

 

She had mixed experiences of nursing care but feels that personal care was sometimes neglected...

She had mixed experiences of nursing care but feels that personal care was sometimes neglected...

Age at interview: 67
Sex: Female
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What about the nursing care, you haven't mentioned that?

The nursing care well we could do with some more nurses. The, we've had auxiliary nursing and also healthcare assistants, they did a lot of jobs but I was a little bit disappointed with the nursing care really after I came back from surgery, from recovery, my blankets and my bed was all ruffled up and it irritated me and there was one patient opposite me she said 'Oh God I can see you are very agitated, you are not very happy with your bed.' Yes I've had a quick wash and change of nightie and of course bed pan given and I wet to bed [laughs], I wet to bed, it didn't go in the bed pan. But the night staff they were fantastic, really no complaints and a lot to do you know changing the drips and checking the blood pressure and, and, and all that if toes are wiggling alright, fingers, everything alright and giving you medication, they were fantastic. And in the mornings yes the bed has been made for you and you get your wash bowl but there was a lack of mouthwash, there was a lack of evening wash which I remember you know we used to get these evening washes and the mouth wash and your sheet was straightened and your pillows were made comfortable. That was very, very much lacking I must say.

Do you think that was something to do with shortage of staff?

Yeah, yeah

Or just the way they were trained?

I think because the nursing staff today they are doing more jobs now, the jobs which doctors used to do once upon a time, you see so the nurse hasn't got really time to do the jobs which nurses used to do like pressure care, tidying the bed at night, bringing you a wash bowl, your mouth wash, if you have dentures you want to clear them or if not after a meal you want to clean your teeth and rinse, that was very much lacking I must say and that did upset me. But when it came to the other nursing care like medications and checking the drips and everything and your blood pressure, or if you wasn't well, if something straight on the monitor, that was superb. 


 

Last reviewed June 2017.
Last updated June 2017.

 

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