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Intensive care: Experiences of family & friends

Lack of support and information

Many people felt there was a lack of support for ICU patients when they were discharged from hospital and recovering at home. Some said they were shocked and disappointed when the ill person had come back home but hadn't received any physiotherapy or other treatment, even though they'd still been extremely weak and immobile. One man said he had to pay for his wife to have physiotherapy privately and felt that they'd only started receiving the emotional support they needed when they joined a local support group. 

 

He felt there was a lack of medical support after ICU and that his wife's recovery depended very...

He felt there was a lack of medical support after ICU and that his wife's recovery depended very...

Age at interview: 57
Sex: Male
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The main problems started when we got home. She [wife] went from 24 hours being looked after to nothing, to be looked after by me and my daughter. My daughter was, has been absolutely wonderful, the whole, the last two, two and a half years now I think it would be. 

Does she live here with you? 

No, no, she lives with her partner. I can't fault her at all for what she's done for me and my wife. Well we were so grateful that we treated them all to a cruise on the QEII for a Christmas present to say thank you for them last year. Yeah it was last year. That's right. And that went down well [laughs]. 

But my main concern is the lack of support from the medical side when we came home. Alright she came home, she was given a hospital bed. We had one delivered here so she could sleep downstairs because of her injuries. Her injuries were a broken back. She broke her back in two places. All her ribs on her left hand side and both lungs collapsed. She had to lie flat on her back for the best part of eight weeks. And my wife does not like sleeping on her back because she already had a back problem before all this happened. That's the worst thing that could have done. But apart from having the bed we had no help whatsoever when she came home. 

District nurse came in a couple of times. We asked for physio. She had physiotherapy every day while she was in hospital. When she came home she had nothing. To get physio we've had to go private. And that's the bad thing about it all.

The physio, the local physio came once, saw that she could just about manage to get about. Because when she first came home she had to wear this brace around her so she could stand up. And the physio saw that, saw she could just about get around and we never saw her again. That was, I couldn't believe it.

Some people said they'd worried about a lack of support for ICU patients during recovery, which meant they failed to discover whether the ill person was being adequately cared for when they got home. 

 

His partner's mother should have stayed in hospital longer so she could get the support she...

His partner's mother should have stayed in hospital longer so she could get the support she...

Age at interview: 38
Sex: Male
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So anyway as I say, you know, [my partner's mother] came on leaps and bounds. Still no one came. You know, we were expecting nurses, physios, stuff like that. No one came. I think in the end [my partner's mother] eventually saw her own doctor. And he said she was, you know, getting on well, she still had to take it easy, you know, everything was developing. She ended up going to physio, but a private physio that she paid for. Which is another thing I can't understand. Surely the hospital should provide someone? And I thought there would be somebody on a daily basis giving her exercises and everything. But there wasn't. So ended up paying for that. And we basically moved on to this day. 

But [my partner's mother] still suffers. I still think, you know, in my eyes there should have been regular visits to the hospital, you know, X-rays, stuff like that. Because how does anyone know what's going on? And she's on a lot of medication. Which concerns me, because it's long-time medication. And, you know, you read about it, you know, if you take something for a long time it can damage your insides. I just feel that there's not enough checking-up from the hospital. You know, they don't follow up. They go to this group, which I think is a cracking idea, which I believe was started by one of the Intensive Care nurses, which I think that's very good for the pair of them. But apart from that, you know, the hospital discharged her and that was that in their mind. Which, it's wrong to send someone home in the condition [my partner's mother] was in, was wrong. You know, yes, we're family, yes, we're friends, yes, we will care, but we're not medical people. We, we didn't have a clue. 

You know, every day we learned something. But if something had happened to [my partner's mother] you know, when she was flat on her back, you know, if she'd had breathing difficulties or something, we wouldn't know what to do. And I think out of the whole thing, that gets to me. And, you know, we all pay National Insurance and stuff like that and I just don't think you get what you're paying for. And I'm not blaming the staff, not the nurses. I think they're tremendous. To me, the whole system's wrong. It's all about, 'Get the person in. Get the person out.' And I think that made circumstances ten times worse. I think if [my partner's mother] had spent a couple more months in hospital, and had physio, it would have been so much easier on everyone, and [my partner's mother]. You know, the fact that she came home and she was dependent on us lot. As I say she's a proud woman. She didn't like that, you know, she really didn't like that. And I didn't like seeing her like that, because she'd always done everything for everyone, and suddenly she could do nothing. And so I just think it's wrong. As I say, she still suffers today.

Some felt that, had it not been for the care of relatives, the ill person might not have recovered and they were concerned about what they felt was a gap in health care provision. A few stressed the importance of ICU follow-up clinics in getting information and support. 

 

He felt strongly about there being more support for ICU patients, including ICU follow-up clinics...

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He felt strongly about there being more support for ICU patients, including ICU follow-up clinics...

Age at interview: 66
Sex: Male
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On her return home she was still physically weak, psychologically she was getting better but physically still very weak. The general practitioners that we have are extremely good but of course they are out of their depths because GPs see very few of these cases and their usual reply is 'you have been very ill, what do you expect to be like?' So although he tried to be supportive he didn't have the knowledge and experience to be supportive and I wanted a 'disabled' car parking sticker so I could take her shopping. Can't get one. Because she is not disabled, she has not been disabled for 12 months with a permanent disability, so she can't get one. The rules don't allow it. The rules don't allow for temporary adaptations to your home. So I had to take her upstairs, morning, noon and night, to get her in and out of the bath, to go to the loo, help her go to bed etc. etc. There was no means of getting any support, albeit temporary, from Social Services to help in that area. So these are problems that most people have. 

The NHS isn't really up to dealing with these issues, it isn't up to dealing with patients coming out of Intensive Care and those were the major issues that I found were the problems facing me when she came home. And I think what is lost in the whole exercise here is that patient recovery following critical care depends very much on the care they are given by their relatives at home. Because there isn't the infrastructure in place by the NHS to help in that area at all. So we carry that burden and we carry it out willingly. And we want to do it because we believe in it and we love the person involved, so we are prepared to do it. 

But nothing can prepare you for the effect of what it is like when they come out. And there is no support at all. You have a physical and mental wreck, to be very crude about it, on your hands and a home that isn't suited for it. And there is no support there at all. And that is the biggest hardship and problem. 

I mean the biggest problem that we all face is the life after critical care and that is one or two years after, it is not just a matter of a few days or a few weeks, it is one or two years after critical care. And that is the problem we all face once we get over critical care.
 

One man said he'd become his wife's full-time carer and they'd had no other support. He would have liked some practical help but felt there was none available. 

 

His wife is very dependent now and he feels that no one could understand her needs and problems...

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His wife is very dependent now and he feels that no one could understand her needs and problems...

Age at interview: 66
Sex: Male
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I mean at the moment I do literally all the cooking and everything. My wife will come out and say, 'Can I help you?' and I try and give her little bits and pieces that I know she can cope with, but to leave her, to put the electric plates on the cooker, no she is not safe in doing that. Like she said there was one time she put a pillow into the microwave. And we were standing in the kitchen talking at the time and I could smell this smell and didn't think anything of it. And then suddenly my eyes went to the microwave and thought what has she got the microwave on for. And then of course I opened it and flames came out from the pillow. 

Would you like, if somebody were available, would you like them to come in and help? Or you would prefer to do it yourself? 

Well it would be very nice to get a complete break away from her, say for like three or four days, but the only trouble would be there is, that the person that would replace me would have to be able to cope with things the way I cope with them with her. And I don't think anybody would be up to that type of standard if you know what I mean. And I would then start worrying. If I knew everything wasn't so, then I would then start worrying and it would be pointless me going anywhere. But at the moment I feel that it is me that should be looking after her because I know the ins and outs of her problems. I know what she needs and what she wants and, you know, her likes and dislikes. And it is easier for me to do it rather than try and explain to somebody else. 

All I can say is that if you find your health is suffering as a result of it then you have got to seek help. Where you seek the help from I just don't know because the way things look outside beyond all these organisations and that, they are willing to help, but they don't have the help that you actually really need to cope with your problem. 

And the help that you would really need, you feel they wouldn't understand all your wife's needs? 

This is the problem. If she was in, shall I say, a nursing home, with say six patients and there was three nurses to six patients then they would get to know everything, her problems, and they would help her. But there is very few nursing homes in the country. I would go as far as to say there is probably not a nursing homes left in the country that would have one nurse to two patients to look after. So even putting her into a nursing home for a week to give me a break, they still wouldn't be able to cope with the problems she has got. They wouldn't physically have the time to be able to do it. And as a result of not having the time to do it, then my wife's health would suffer dramatically as a result of it. And I wouldn't want to put her into that position. This is the problem you have got, and although there are plenty of organisations who on paper you know could help, when it gets down to the real practicalities of it, the practical side of it, there is very little help out there. 
 

One woman was angry and disappointed when her husband had been sent home with medication that caused him further problems. Like a few other people we spoke to, she was surprised when she contacted her GP and he hadn't known that her husband had been in hospital. Several felt that there was a lack of communication between hospital staff and GPs. 

 

She felt the medication her husband had been given caused him severe problems and, if she hadn't...

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She felt the medication her husband had been given caused him severe problems and, if she hadn't...

Age at interview: 58
Sex: Female
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But over the weeks, well over the days, he [husband] started to get really, really poorly. And I called his GP and asked, you know, to check him over because he'd been in hospital and he hadn't been well and asked about the tablets, etc. And one particular one that I hadn't' I didn't know what it was' it was called risperidone. And I asked what was that was for and the GP said, 'Look it's a very good drug for the trauma that [your husband] had been under'. At this point [my husband] was having eight milligrams a day of this particular drug. I don't know what it was for and I didn't know why he had to take it because there was no leaflet actually in the box when I brought them home. And so I didn't' I hadn't got a clue. So there I am giving him these tablets unbeknown to me, I'm actually poisoning him. 

Anyway suddenly he started to' he had this stance about him'he wasn't very strong on his legs anyway. And suddenly his knees started to bend and his arms sort of came up to sort of head height with his hands in front, stiff. And his eyes were bulging out and pushing his glasses off his head. 

So I had to get hold of the GP. And he my husband was in quite a state actually. So he had to be admitted to another hospital, a third hospital, where this risperidone drug was, they took two milligrams off on the Friday. He was taken in on a Friday, a Friday evening, where they took two milligrams off on the Friday. They took another two milligrams off on the Saturday, and they took two milligrams off on the Sunday and they took another two milligrams off on the Monday. So he was completely off this drug called risperidone. I then learned that risperidone is for acute schizophrenia and it's for paranoia.

And apparently the ICU notes that were sent to the main hospital, it was that this drug was to be checked daily. He should never have been on it after he came out of ICU. You know after say maybe a week, once he'd stabilised, I think maybe he should've been taken off then. But they just didn't. They carried on with them. And they gave me six weeks worth and said, 'He must finish the course', along with you know two lots of strong antibiotics. So his mind was gone really and' to be honest I was terrified this was going to permanent. I'm just touching wood and whistling that it's not permanent. He's back at work and he's fine. But that was through more luck than judgement. And I am going to blow my own trumpet here because I think the only reason my husband is still here is because I queried the tablets.

I think the strangest thing maybe is that I actually had to phone the GP and ask him to come and see [my husband] after he'd come out of hospital and I'm just a bit surprised that the GPs are not informed. 
 

Some people felt that there was very little support not only for ICU patients once they'd left hospital but also for their relatives. One woman said she would have liked emotional support after her mother's critical illness because she'd felt angry and 'forgotten'. 

 

She feels there is no help for the relatives of ICU patients, even though they have been through...

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She feels there is no help for the relatives of ICU patients, even though they have been through...

Age at interview: 37
Sex: Female
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I felt quite angry because afterwards all the support and all the attention was for my Mum. And I know she went through all the horrible side of things but for the family it is more emotional and you are there every day and see, you are very up and down, you see, and I personally feel that more support is needed for the family. Mum went for a follow-up and I went with her because I felt I needed something. 

But there wasn't anything. You know whether it is just someone to' the doctors and the nurses are lovely and they give you as much information as they can. But yes, I think you need some support, you need someone to say yes we have been through this and that is quite normal or just to listen to you. It is very hard, even though my husband is supportive, it is still a very difficult time for you and probably somebody who has been through it or who knows what they are talking about to say, 'That is quite normal to feel like'' 

Like I say, me feeling angry, you know, is that a normal feeling for people to feel like that or am I a really awful daughter for feeling jealous and angry with my Mum for putting me through that. So I think there could be more for the actual relative. It is all patient, everyone is focused on the patient, to get them well and through, which of course is natural. But you do kind of get a bit pushed out and a lot of waiting in the relatives' room, not knowing what is going on. You know alarms have gone off, you are put in the relatives room and you can sit there for two or three hours not knowing what is happening and that is very difficult as well. 

Did you talk to any other people who were in the relatives' room or'? 

There was never anybody else in there when we were there. The gentleman opposite, on the rotating bed, kind of got a bit of relationship going with his wife. Just saying hello and that and how is he doing and how is my Mum doing. Whenever we were in the relatives' room, we were generally on our own. As I say the nurses were very good, you would go in and they would give you an update and tell you everything. But they were obviously concentrating on the patient and I have always felt since being there, I think more should be done for the relatives. Whether the patients survive or not because there is still almost a feeling of grief even if they do survive. You have still gone through a life changing, and luckily for me, my Mum is virtually back to normal. It could have been a completely different story, you know my life could have been changed completely, and it is a very emotional time. So yes, I think there could be more for relatives.
 

Some people had been disappointed in the lack of support or concern shown by their families. One man said that none of his siblings asked about or came to visit his wife while she'd been in hospital or when she was recovering at home, and this had been upsetting and disappointing. Another said very few of his wife's family had visited her in ICU or offered support.

For more information on support after intensive care see our 'Resources' section.

Last reviewed August 2018.

Last updated February 2013.

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