I don’t remember actually physically being moved off Intensive Care onto High Dependency, but I remember them doing the handover because I remember the nurses standing at the bottom of the bed going through the notes doing the handover. I remember the male nurse rubbing my feet and saying, “You’ll be alright on here girl, well look after you.” And I can remember that side of things and then he went off, and it all just went mad again.

So there was like, long periods of being lucid and watching people and understanding what was going on and I had periods of just like everything just being madness again. But I couldn’t like think to myself while I was in the madness, “I’m in madness, this isn’t real”, it was real to me.

So that was still going on in the High Dependency Unit?

Yeah, at first yeah.

How long were you there?

Ten days.

Ten days, so when did it start kind of…?

It started easing off after, probably after four or five days started to ease off and I started being able to go to sleep. I mean I wasn’t sleeping for long because it’s just so boring in there. I couldn’t move, I couldn’t do a single thing, they were still washing me, I wasn’t eating anything, I was on a drip for fluids. So basically they were just like washing me and like just leaving me lying on this bed. And they were doing the drugs and all things like that. So I wasn’t tired and I was like, I was just watching and watching. And they would say to me of a night, “Go to sleep.” But you just can’t sleep. I’d sleep like for an hour and then wake up and then I’d be awake at four o’clock waiting for the clock to tick round to eight so they’d change shift and all stuff like that.

Yes. So did you move to HDU, you were in ICU for what, three or four weeks?

Patient’It was about four, no it was about four or five weeks and then I went to HDU just for a week and then I was discharged from there which I thought, I was a hell of a success story [laughs] because there were concerns, particularly because my mobility still wasn’t very good and you know for health and safety reasons the nurses were taking me to the loo and waiting outside and I couldn’t

In a wheelchair?

Patient’No I was walking but that was their aim because they thought I was going onto a ward and they were saying your experience on a ward would be, because it was one to one nursing and then it was, I had a nurse, you know a nurse between two of us and they said you know we need to get you up and moving so you can go to the loo unaided and stuff like that. But because of the risk of infection and the fact we had, [my partner] was going to stay at home and we had a downstairs loo, I got discharged quite quickly really.

Partner’Because shed done everything else sort in of within a week, initially she couldn’t lift her glass or a plastic glass, within two days of being in HDU shed moved onto a China cup and we was, which seems silly little things. But for us they were, you know she was in tears and I was when she was told me “I’m onto a China cup, lifting that and then you know obviously feeding herself and shed made ten yards across the ward with a Zimmer, ten yards by herself and then to the loo and back. All within a week she said, like she worked so hard, she was having extra physio sessions, she got it back. I mean I came rushing in to see her, shed say “No the physio is here, you’ll have to go and wait for another hour,” so I’d go out and wait because that’s what she wanted and she was determined to use all the time she could to get out as quickly as she could. So by the time she came home it was just a strength issue really wasn’t it?

And then they moved me [from ICU] but I said I don’t want to go. I don’t want, I felt safe there, I don’t want to be moved. Oh but they take that out [tracheotomy] about a day before, I’m dying for them to take it out because I can’t speak, they’ll be wishing they put it back in because then I won’t shut up me because I’m very talkative. Anyway were having a laugh and family’s getting a bit happy because I’m talking then so they move me down to HDU but I still can’t get out of bed. They’re hoisting me out of bed to sit me down, which I showed you on that [ICU diary]. And I’m feeling a bit, a bit better, have me good days and then have days when I’m sick and I can’t eat but I’m supposed to eat. If I don’t eat I don’t get better but I can’t eat, I want to but I know I’m panicking again thinking no, no what’s going to happen here, I’m not eating. But when you can’t you can’t, but the doctor wants you to eat. They all want you eat. Anyway I feel better couple a days, I’m eating again.

I shuttled backwards and forwards between this Progressive Care Unit, which was a new comfort zone, and the general ward, which was a low-level comfort zone. I felt terribly vulnerable and exposed there. And the reason for shuttling backwards and forwards was that the source of the infection within my system couldn’t be isolated. Finally it was found to be a problem with my bile ducting, which had kinked. And that was the source of the inflammation which was attacking the multiple organs within my body.

Was I glad to move out of Progressive Care Unit into general ward? No. I knew that the level of care was going to be different. And having experienced Progressive Care Unit, then general ward and back to Progressive Care, general ward, back to Progressive Care Unit, I knew where my real comfort zone was.

I remember saying, “I don’t really want another operation” and being persuaded that that was the only way. Very jumbled memories after that. I remember not being able to breathe, and oxygen masks, and then having a very, very tight mask put on that I didn’t like and that I fought against. I didn’t know, but I’ve found out since, that I was on HDU then. I don’t remember HDU from that. I didn’t know where I was, I didn’t know what ward it was. And I remember fighting quite hard to get this mask off because it felt like it was suffocating me. And one of the nurses said, “If you can keep it on, I’ll hold your hand.” And she held my hand for several hours I think whilst I had the mask on.

And how long were you in the Intensive Care Unit?

I think about a fortnight.

And then?

And then I went to HDU, which I didn’t remember from the time before. I didn’t like HDU at all because it’s very, very crowded in there. Theres too many beds and you felt like you could reach out and hold hands with the person in the next bed. But luckily I was only there from about 6 in the morning until 6 at teatime, and I was moved back onto the ward that I’d started out on.

So you were only there for a day?

I was only there for a day, yes.

The first day that I came out of that ward I went to a High Dependency Unit, and I think it was, they have a follow-up team. So when you move from the follow-up, you also got a visit. So I, you know, a day after I’d moved, from the sister. And I remember her arriving, and she said, “Oh” you know. She was a very pretty woman, dressed in blue, long hair, with a package of stuff, a folder of stuff on her arm;

And at the end of the bed you had the usual sort of table, which comes over the top of the bed, and this was full of stuff. And she said, “Do you mind, you know, I’m not supposed to do this, but do you mind if I put this file or this folder?” She said, “I know I’m not supposed to do that, not supposed to put it on the patient’s, end of the patient’s bed. But if you don’t mind.” I said, “No, no, no, that’s fine. You go ahead.” So perched on the slightly sort of wide-ish end to my special electric bed was this blue folder, hardback folder, a ring binder is probably really what it was. And then she sat down on the side of the bed and started talking to me. And I got to the bit with her where I said, “One of the things that I really, really found annoying, that really caused me distress was, if I said something, that I wasn’t believed. I said, “It’s like saying to you, if I say this to you right now, your folder has fallen off the end of my bed on to my feet, and it’s quite sore.” And she went, “Yes, right.” And I said, “Your folder has fallen off the end of the bed. And it’s quite sore. It’s on top of my feet.” And she still looked at me, and I said, “Do you see what I mean? You would now, you don’t believe me. But if you turn your head and look round you’ll see what I’m telling you is the truth.” And that’s how far I had to go, that I was being interviewed to my experiences of being in Intensive Care. This was the one thing that really upset me the most. And I was still having the same problem;

And she looked at me, she went completely red, as she should have done. And she said, “I am so sorry.” I said, “I’m sure you are now but I’ve demonstrated to you what I’ve gone through. And even you, tell me, even you didn’t think you’d do that, did you?;

Patient:When you come out of Intensive Care, you’ve been in Intensive Care, you’ve had a one-to-one basis. I mean they look over, they check on you every half an hour or even more and they’re there all the time. When you go to a general ward, they’re not there all the time because they’re too busy. I think what you need is a ward in between the two, where they can have someone, where they get you back into the, in my case they would have actually got me back to eating correctly, again, which would have helped. I wouldn’t have had to have laid in that bed, having eaten the little bit of food they’d given me in the general ward, and been sick, and waited fifteen, twenty minutes for them to come and clean me up. Which wouldn’t have happened in an intermediate ward. And it’s not good for your recovery. It puts you back because you, you know, you’ve made great, great strides in Intensive Care, you’ve come out, you’re feeling on top of the world because you’ve actually recovered and you’ve actually beaten the system because you are alive and you’re ready to go. You go into a general ward and it seems as if they want to kill you off again. And, you know, that is the big problem.

Wife:But I understand that the particular hospital that [my husband] went to, they’re going to try and put in a High Dependency unit, which, it will be a better transition from Intensive Care to go to a High Dependency Unit, and then go on to the ward. Because it’s just like being cast off in a boat. You have this wonderful one-to-one standard of excellence and you go, and next thing you’re literally fending for yourself and you’re on your own. And for anyone sort of, you know, finding out about what the operation entails, and what the facilities are going to be for them, I would think it would be quite frightening.

Wifes Anyway clearly he didn’t need the intensive nursing of an Intensive Care Unit. And so we were informed that he was going to have to be moved to a big ward, a trauma ward, which was on the same floor.

Sadly the hospital he was in, excellent as the Intensive Care Unit was, hasn’t got a High Dependency Unit. And the gulf between the nursing that he did have in the ICU and then that he subsequently had on this trauma ward was just enormous, and frankly not acceptable. Because he was still very confused. And I accompanied him to the trauma ward and it was about an hour and a quarter before a nurse came and introduced herself. It was a 6-bedded or 8-bedded ward, I can’t remember, with a very challenging patient in the bed immediately next to [my husband]. A chap who clearly had a drug problem and who was behaving in a very, he was acting out quite a lot. And [my husband] was lying there totally confused and, you know, bemused by the whole thing and had no, had I not been there, wouldn’t have any idea how to summon any help whatsoever. No one showed him how to use the buzzer. There was no water. So I had to be very proactive. And in fact about an hour after hed been there was so upset about this that I marched back into the Intensive Care Unit and saw the consultant, who, you know, immediately agreed that it was not satisfactory and that this was a problem they had every time that they had to discharge somebody from the Intensive Care unit. But for some reason this wasn’t a target in this health authority, although they recognised that an HDU was absolutely crucial.

So [your husband] had to continue staying in the trauma ward?

Yes. What they did do was, they have an outreach team, which is frankly not very adequate. But, you know, so once a day the outreach team would come and see him to check that, how he was getting on. It was the best they could do clearly, but certainly didn’t take the place of a High Dependency Unit, which is where he should have been.

What did the outreach team actually do? Was it just a conversation?

A conversation basically, and just sort of I suppose monitoring that he was, you know, having his, you know, the right sort of checks being, sort of being made by the nursing staff. The nurse who was in charge of him was also challenged by, you know, linguistic abilities. She was very caring but her English wasn’t excellent. So all in all that wasn’t ideal.

And then on the sort of second morning of being in step down I kind of had what they call, I can’t remember the phrase now, what they call, outreach nurses, come and talk to me who are the nurses who sort of link between intensive care and the normal wards. And she came and talked to me about possibly being moved on to a ward that day. And obviously that was all moving in the right direction and I desperately wanted that. But it was also a very scary prospect as well because there is, theres a security blanket you have in intensive care with having people there all the time because on the ward you don’t have a nurse there all the time. And it was quite like passing a test. So she came sort of first thing in the morning at about eight and then I had to wait for the consultant to come round with his kind of army of doctors and students. And they all kind of huddled round my bed and kind of looked very serious at me and kind of looked at my notes and then sort of nodded at me and then went away, which somehow meant I was allowed to go down to the ward.

Yes. What was particularly good with the outreach?

Well I just, I think they were very good at handholding almost, a they came and they were very efficient. There was a team of three of them and they started to come and see you in step down and then they came to see you every day until I had my trache out, which I think was about two weeks. So they would just monitor you and kind of, but they were very direct at talking to me and I felt, whereas the doctors generally didn’t talk directly to me. They kind of talked to each other and would kind of shuffle on, whereas the nurses were very good at talking directly to me. And I think, and you could just see them working with other people as well. They were very efficient and it was sort of, they were there for when they needed to be there and then they weren’t.