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Intensive care: Patients' experiences

Messages to others

The people we talked to passed on messages of advice to others, based on their own experience. Everyone is different and what works for one person might not work for someone else. Here are their comments:

Messages about ICU

  • Trust the ICU staff - your loved one will receive the best care and treatment available. If you are going in for planned surgery, be positive and assured that you will receive the best care the staff can give you.
 

He advises people not to be afraid of intensive care because the nursing care and treatments are...

He advises people not to be afraid of intensive care because the nursing care and treatments are...

Age at interview: 50
Sex: Male
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So I suppose on that score my advice is don't be afraid. It's [ICU] about the best place you could possibly be because you've got, as I've said before it's what it says on the tin, it's intensive care. There's someone there all the time. And if you are really ill that's literally true. There's someone sitting at the end of your bed all the time. So if anything changes, anything goes wrong, they're there. So you couldn't be in a better place.  

I mean, I think some, perhaps older people get scared by all the equipment, but it does a lot of good, medicines, absolute banks of equipment everywhere. And because everything in there's so high tech... there's, you know, wheeling these big machines and the x-ray machine comes in and you're not sure what it is and you think, "What are they going to do with this thing?" When all it is an x-ray machine. Things like that.  

When you're ill, I think, and you're not used to them, could be off-putting. But it's, also try and relax, I think. I think I've always, I've been always, well every, after the first experience I've always been very grateful that I've been taken to Intensive Care actually because I know I'm going to get better.

  • It might be a shock to see your loved one attached to so much equipment. Don't be afraid of the ICU equipment - it is all there to help.
  • Keep a diary for your loved one. When they are well enough to go home, they will want to know more about what happened.
 

He advises people to keep a diary for their loved ones while they are in intensive care because...

He advises people to keep a diary for their loved ones while they are in intensive care because...

Age at interview: 47
Sex: Male
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The only thing I'd say to other people is, is that if you get into a situation where you are in an Intensive Care unit, if you've got that Intensive Care unit, then please just take a diary or just make notes of what's going on, for whoever is actually in that unit. Because they will want questions answered. And that's the key I think really.

Messages about recovery

  • Don't bottle up your emotions - talk about what happened and ask all the questions you need to.
 

She advises people to talk about their experiences, and relatives to tell them what happened...

She advises people to talk about their experiences, and relatives to tell them what happened...

Age at interview: 40
Sex: Female
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I would just say, just talk about it as much as you can because the more you talk about it, the more you straighten things out in your own mind. Don't bottle up and dwell on things. I've been over certain points of things and what I think people said to me which my sister's said, "I'd kill them if they'd have said that, no way." But I've been over and over hundreds of times some points of when I was ill, with her. So I think people should really talk it over, every, even to the point where we've just exhausted it now. Absolutely talked it to death. So I think you need to get it out, just don't try and bottle it up because it's, you think things, they play on your mind, and they alter as well in your mind, the knowledge, they don't remember them exactly how they were, you'd have like your own slant on them.  

That's really, really helpful, is there anything you would want to say to family members?  

Really it's just like talking through things, go and tell the people how things really were. I mean just, exactly as they were. 

Just really listen and tell them things, tell them what was going on while they were intensive care because really you don't have a very good perspective of it. When you're the patient you don't really, you don't comprehend things exactly as they are. Everything's very strange so you need your head putting straight on things and I felt as well like I was moved around in intensive care, that I was all here, there and everywhere. I said that to my sister and she said, "You weren't, you were in the same place." I always felt like I was, that they were pushing you round in the bed. She said, "You were never moved, you were always in bed four." So I think families should tell the people really the truth of what's happened and just, the more information, the easier things are to deal with.

  • Nightmares are normal after ICU and will pass.
  • Be positive and look forwards. There will be setbacks and a positive attitude will help you get through them.
  • Recovery will take longer than you expect - keep yourself as active as you can, doing a little bit more every day.
  • Although recovery can take a long time, it's easier if you set yourself goals every day and work towards them.
  • Be kind to yourself - be active but don't push yourself too hard.
  • Accept support.
 

He advises people to set realistic goals for themselves and to take responsibility for their own...

He advises people to set realistic goals for themselves and to take responsibility for their own...

Age at interview: 68
Sex: Male
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If you are listening to what I have to say, clearly you've come out of the Intensive Care Unit and you're on the road to recovery. And that's good. The thing I have learnt is that it's a long road. There's no quick, easy fix. You've got to discipline yourself. You've got to tell yourself off. You've got to be prepared to be chastised by those nearest and dearest to you, who do it in a loving way, but for your benefit, for my benefit. To say, you know, "Unless you do this you will not have the following benefits." To set yourself realistic goals and challenges in a timescale which is meaningful. To remember that the world doesn't revolve around you, but you are part of, you're part of a family, of a community, of a culture, of a multi-culture. And you have a role to fulfil and if you look inwardly you're never going to fulfil that role. You belong to, if you want to be part of the world you've got to be prepared to contribute to the world. And much that your family can do for you, and all your friends, they can only do so much. You've got to own responsibility for your own well-being. I think that's the message I would wish to leave. 

Messages to relatives

  • Give support but allow your loved one to continue making his or her own decisions.
  • Don't be too over-protective.
  • Look after yourself because this can be a difficult time for relatives as well.
  • Accept support when you need it.
  • Help your loved one to keep positive, giving them love, support and encouragement.
 

He advises relatives to keep giving love and encouragement to their loved ones because it will...

He advises relatives to keep giving love and encouragement to their loved ones because it will...

Age at interview: 30
Sex: Male
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Yeah obviously now, the works that you're doing now keep, keep it going, keep them strong, keep them focused, keep them positive. It can be a very daunting experience. It can be very daunting. You come out of there asking a million and one questions. You're unsure why it's happened, so it's just basically keep on speaking words of encouragement. Support, lots of love, really get the message out - that you are still alive, and don't let the severity of the situation that they've been through, but it's the case where they've come out of it, so the worst is over. So from now on things are going to be getting progressively better, so it's just encouraging them that the worst is now over. Yeah, and they can make a rapid recovery. If it's the case where it's an ongoing illness, like the situation that I'm in with my sickle cell, then it's really a case of ongoing support, and ongoing love you know, and just keeping them, keeping their mind focused on positive things, and they'll be alright. 

Last reviewed August 2018.

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