She was terrified going onto the surgical ward. She cried. She had tantrums. She had panic attacks. She felt safe. I think that was the big thing. She felt safe where she was. She was plonked, as she says, onto a surgical ward where the staff, there wasnt as many staff as there was in the high dependency and they had loads of things to do and they had twenty odd other patients to see. [My friend] felt very isolated because at that point she was managing to get out of bed into the armchair with the zimmer but needing two nurses because she couldnt stand. She could stand but she wasnt steady. And she was either lying in bed or sitting in the chair for hours at a time and she was frightened.

And she kept saying, The nurses didnt understand. But they did understand. It was just that they also understood that she needed to be doing more for herself and that it was a busy surgical ward that shed gone onto. And that they didnt always have the time to sit and chat to her about how she was feeling or what she wanted.

When he stood up, there was a rush of blood from his head which caused him to faint, every time he stood up in the intensive care unit. So he had to be very careful about that. His memory at that time wasn’t operating at all so he wasn’t able to remember that he shouldn’t be standing up on his own. And the healthcare assistant basically said to him to do as much as possible for himself!

So twice on the first day of being admitted to the single room, he fell over. Once I was in the door way so I wasn’t able to get to him first of all and then I wasn’t aware that he was going to be doing this. And then somebody visited him in the evening and when I was saying goodbye to his friend at the door, my son then tried to put himself back into bed because you know, he had to do as much stuff for himself [laughs]. And of course, as soon as he gets up he collapses because the blood’ I can remember sitting in the main hall of the hospital that night because I’d been with him all day and I can remember, it was late at night, and I can just remember just bursting into tears and saying to my husband, ‘I can’t be here twenty four hours and I can’t keep him safe. And knowing that we were going to go home and he could fall, so that was actually quite traumatic.

It was circumstances, you know, and I’m quite sure if he hadn’t had the MRSA, he would’ve been in with everybody else, and other people would’ve kept an eye on him. It’s unfortunate that he contracted that. And you know, I mean, hed gone to a ward where they had orthopaedic patients coming in, so the last thing they needed was somebody with MRSA coming in to their ward. So you know, you can understand the conflicts that were there. But it was a horrible feeling because I knew that he wanted to do as much for himself as he could. He been told to get on with it and I knew he wasn’t safe. And I also knew that if he fell over and banged his head again, there is that secondary impact where it’s so much worse. And what frightened me was that if he banged his head, the swelling would be out of control. It would start a chain of events, basically he would kill himself because you don’t have to hit your head very hard the second time for it… so that that was quite frightening. I didn’t like that at all.

And how long was he there for?

He was there for about five days.

After two weeks he was discharged from ICU and went on to, well what I thought was a holding ward while waiting to get to the rehab unit. But unfortunately he was there for a very long time. It was actually a chest ward and [my husband] really didnt have the type of care he needed. He had good nursing care. Weve no complaint about that but he just seemed to stagnate there. He had very little physiotherapy. He had very little help in sort of neurological help, in fact in some ways he was neglected on that ward because they just did not have the facilities to cater for him. And he was being tested for swallowing and so on because that [my husband] would have to be helped to put in his dental plate. He and the speech and language therapist used to come in the morning. [My husband] was never able to actually chew food although when I used to go in, I started going in every day at 12 oclock and staying with him until half past eight because I felt he wasnt really receiving the nutrition.

Things were not very good. And I was getting more and more depressed over the situation because in some ways [my husband] was improving but in other ways he wasnt. He wanted to be able to walk and he was getting out of bed but unfortunately because he hadnt had physiotherapy he hadnt actually taken any weight on his feet from the 19th of November until the 14th of December. But of course he really wanted to be able to sit up and walk but because he was having minimal physiotherapy, so much so actually that the senior physiotherapist advised me to write to the head of inpatient therapy to see if anything could be done.

And at that stage I just felt [my husband] has been through so much, he has cost the NHS so much just keeping him alive and still he just cannot get this, the extra little push which might, you know, get him home from hospital. And we were just getting more and more frustrated waiting day after day, saying well when is he going on to the, you know, the rehab ward. And they kept saying, Well there isnt a bed available yet. But from, [my husband] sat in a wheelchair for the first time, he was hoisted out of bed for the first time on the 14th of December and by the 16th of December he was actually walking with the Zimmer frame. He was just more than ready for it. And from then, things just improved so dramatically from then on.

I dont know what the solution is to be honest but I have a suggestion for when people come out of ICU, when theyre having twenty four hour monitoring and they are wonderful people. They must earn a fortune and they are worth every penny they get. They should have another ward where these patients are taken and put into another ward for at least a week, to be monitored, not twenty four hours as they have been, that would be totally impractical. But with trained staff knowing what theyve been through and knowing what to look for. And then after that if its necessary for them to go further, they then go onto the main hospital because I really believe, I do really believe they there are patients that come out of ICU, having fantastic care and die in the main hospital. And I believe that.

During a lot of this time [my husband] was very agitated and not deliberately but he seemed to pull out his canulas because he kept, hed thrashed his arms around a little bit and his favourite way of lying in bed was actually lying sideways with his legs over the side of the cot. And, you know, the canulas kept coming out with the result that then they left the canula out and [my husband] was receiving very, very little fluid. He actually contracted kidney problems, although my daughter who is actually now, shes one of community matrons locally, she pointed out that he really was showing the clinical signs of dehydration but they kept saying, Oh well wait for the blood test. With the result that when the blood test came through, the results came through, [my husband] had you know quite a bad kidney infection. And he went on antibiotics for that and had a very bad reaction to that. He came up in a rash, got the most horrendous diarrhoea and he was just tearing himself because of the itch. And this happened like coming up to a weekend when there was really very few doctors available and in the end just one of the nurses took very kindly, she actually sent down to the childrens ward to get some calamine lotion for him.

They sent her straight down onto the main surgical ward and the first night, well first morning, she was there somebody came along and just plonked a bowl of water down in front of her and expected her to wash. And on this particular occasion she couldnt even lift her arm off the bed clothes let alone sit up in bed.

She had got no energy left at all this time and eventually they took her into a side ward because they realised that she wasnt quite ready to go out onto the main ward. But even on the side ward, the people when the meals came round they would put it on the table and push it in front of the patient. And obviously she couldnt reach the food to eat it. One particular day after a couple of days, I happened to come along. It was still meal time and they used to let me creep in as long as I didnt make a noise, you know, I could go in out of visiting times. And I noticed that there was food all the way down the front of her and I asked her what had happened to her and she said, Well I was trying to get some food down but I cant reach. I cant pick the spoon up. And she had got it all down her. So I started to feed her then and she was quite hungry. I told the nurses the problem and they said, We just havent got time to individually feed everybody. So, you know, if you would like to come in, you are more then welcome to help feed her.

Until the speech and language therapist could check him for chewing and swallowing, he couldnt, he well he just couldnt be given a meal where he needed to chew although hed eaten, he used to eat, he used to eat quite chunky stuff that I took in when he had his dentures in but, you know. He just , well he couldnt you know.

Were you told when the speech therapist would come and have a look or were you just kept waiting?

No she came, she did see him quite frequently and actually she was very concerned about [my husband] because over and over again on his chart it was saying, you know, he had sort of one spoonful full of porridge in the morning and simply because they did not have time to feed him, the time. It took a long time. It used to take me half an hour to get his main course in and I used to keep his lunchtime dessert and feed him that an hour later and likewise for his evening meal. It was time-consuming. But we happened to be, my daughter happened to be with [my husband] when the gastroenterologist came because the speech and language therapist had voiced her concern about [my husbands] nutrition. And he came really to assess him to have his tube, I cant remember what they call it, [laughs] straight into his stomach. And [my husband] was, I was feeding [my husband]. I think he was having yogurt with lots of chunky bits of fruit bits in it and he said, He doesnt need help. Well I said, I know he doesnt but he, you know, I come in to feed him lunch but hes not having any breakfast or anything else. So then he decided that [my husband] did not need this treatment and I think he did voice concern.

Then he said, because I said, Ill come in at 8 oclock in the morning to get [my husband] breakfast if thats what it takes. And he said, No, he said, That shouldnt be necessary in a hospital, for family to have to come in. So I think he said that a chart had to be kept of everything that [my husband] had, including sips of water and all the rest of it. And the nurses had me to fill in this chart as well, everything that he had to eat. And of course, there was no question of [my husband], he just started to perk up after that. It was really.

And put on weight?

Yes and put on weight, you see [my husband] was not receiving enough fluid because it took a long time to get, I mean I used to get those squeegy bottles of Ribena and literally squeeze it into his mouth because I think he had he had almost lost the ability to. Well I think sucking is a very difficult function for an adult [laughs] and he just was not coping with it. And I mean urine output was very, very low and of course he just, he was having sips of water really and that was it.

We had the impression the general ward were not aware that she had come from Intensive Care. They must have known that. But there was very little, initially at any rate, very little support for her on the general ward.

Yes. So your wife went onto the general ward. And what were your main thoughts and concerns there?

I think we were concerned, my son as it happened came down at that point, and I think we were both concerned that the difference in support for her from being in Intensive Care and onto a general ward was such that she really felt isolated. In fact I telephoned, I said that she had had a colostomy and wed got to know the stoma care nurses well, I telephoned one of them and said, I’m not really asking you to help in a medical professional capacity but just as a friend. Which she did, and gave support to my wife.

While she was on the ward?

When she was on the general ward. Things improved rapidly over the next two or three days. I think initially there was this lack of support and of realisation as to how serious her state of health had been in the previous few days.

What were your main concerns there?

I think the lack of, as we saw it at any rate, the lack of communication between the staff in Intensive Care and the staff on the general ward. We had, we did see, my son and I did see the consultant registrar. And I think after that things did improve. And from that point on there was good care on that general ward.

What were the main things that you were concerned about with the nursing care there in the general ward?

We felt that the nursing staff saw my wife as a frail old lady. In fact shes very far from that. Not realising that she was in that state because she had come from Intensive Care, or seeming not to realise that. The fact that she couldnt even hold a cup. She was given a drink but was unable to hold the cup. And that was not appreciated.

On the 8th of June, no, before I go off to when he came out, several sort of niggley things happened that I was a bit cross about.

There was one when he was on a catheter. And he had some visitors and it was really beginning to fill up, you know, the top half of the catheter was really beginning to fill up. So I thought I ought to go, before his other visitors came around, get somebody to see to it before they came. So I went down and spoke to a sister on the main desk and I asked you know, told her that this was happening. And I said, Is it being monitored, you know, is his output being monitored? And she said, No, no, no, dont worry, just release it. And so I did. I went back and released it. And the evening went on and visitors came and went.

And the next morning, I was there when the nurse came in and said, His output is not very good, you know, were concerned about his kidneys, would you please make sure he drinks and drinks and drinks. So Im shovelling drinks into him. And then I thought, they must be monitoring his output otherwise how would she know that. So I went to get the nurse and I said, You know, excuse me, last night while I was here, I went to speak to a sister about [my husbands] catheter being filled up and she just told me to release it. So I said, Whatever was in the top of there which was full, I just released into the main bag.

So she came back into the room and she worked it all out and she said, Oh dont worry about it, everythings fine, dont worry. So you know, that could have been a potential problem if theyd thought that there was something wrong with the kidneys. Its all communication, isnt it? Total lack of communication.

Then he went out of the intensive care then and down onto the ward and we, like I said, we were waiting for a place to come up at [the second hospital]. And he was on the ward for a day and a half and I got there at 11 oclock on the second day and I phoned my brother that night and I said, Youve got to get him. Youve got to take me to [the second hospital] I don’t want him there. Hes not to stay there. Take me to [the second hospital] tomorrow. Hes not staying on that ward. It’s disgusting.

So anyway he took the day off work to take me to [the second hospital] the next day but I went into [hospital name] onto the ward and as I got onto the wards, the registrar came up to me and said, Weve got some good news. [Your husbands] being transferred to [the second hospital] tomorrow. Oh no it was that afternoon. So I said, Oh that’s good. And then I followed the ambulance that he was in to [the second hospital]. And then I stayed in [the second hospital] for a week in the nurses quarters there. They were a bit like a

Was it a relatives room?

No it was like, it was like hotel but it was just like nurses quarters but it was for relatives. You had to pay to stay there. Yeah.

So he was in the general ward of the first hospital for a couple of days?

Yes.

What was your main concern when he was there?

Well I just thought that he wasnt being looked after and after being so seriously ill and coming through so much, I used to go then. You never saw a nurse. They were just too busy. There was, they were just all student nurses on the ward. There was too many people. He was in a side ward again because he had this MRSA and there just wasnt enough people to look after. There wasnt enough qualified nurses to look after somebody whod been so poorly. And I didnt think he was getting, it’s not that I wanted him to have loads of attention again but I don’t think he was getting looked after at all properly there.

Could he do anything for himself?

No, no.

And were you going there?

I was going there and helping to drink his tea. I shaved him. I washed him and then Id go back at teatime, the same thing again. Make sure he had his tea and Id sort the telly out for him. Suppose the nurses did go in and I think an occupational therapist had gone in there to see him. And [my husband] was still very muddled. He wasnt at all with it. He, you know, he was still. Up until days when he was in [the second hospital] he was still really. Obviously he had been sedated and heavily sedated for so long it, you know, they just werent wearing off him. It must have took a week or two weeks to wear off him.

So then he was transferred to the other hospital?

To [the second hospital] then yeah.

So I knew he was safe. So I was sleeping better then. And because I knew he was safe and because I knew that Id been to the hospital and it was, it was spotlessly clean and when you see so many nursing sisters floating round. And there were still student nurses there but they seemed, they werent harassed. There was more nurses to less patients. There was, you know, probably about eight patients, ten patients on [my husbands] ward whereas in [the first hospital] there was about 30 odd patients to those four nursing staff that are up there. So that’s why. It wasnt their f

She was moved to a general ward in the hospital. And the guys and the nurses had said it was going to be a shock. Because as I say the nurses in Intensive Care were fantastic and the level of care was fantastic. And having a large number of people for a small number of patients inspires confidence anyway. Going to the other ward, where I think we moved from having one-on-one or one-to-two nursing care, we went to one nurse for every nine patients and in a ward of twenty-seven. And again it’s absolutely no disrespect to those nurses either, because they did the best job they could possibly do, given the resources that they had but they were under-resourced. In my mind they were less qualified than the Intensive Care nurses as well. So, you know, I think it was a real culture shock to be honest. It was like going from a 5-star hotel to a very, very low-level B & B.

You know, to the stage where, when [my partner] went to the other ward, she could hardly walk anyway, she was walking with a frame. She hadn’t been able to go to the toilet, the proper toilet on her own, or she had been able to but not on her own. And simple things like going to the toilet were an ordeal. I think one of the nurses said to us, ‘Listen, you can’t just ring the bell when you want to go to the toilet, you have to plan ahead. So think ahead of when you need to go to the toilet and then ring the bell. But it’s like, theres a girl who’s been in Intensive Care, asleep for three weeks, shes been in Intensive Care for four weeks, and doesn’t really, struggles to, not necessarily remember her name, but is still, the amount of sedation she had was so high that, she did talk nonsense for, probably about, well, probably about a week and then shed ask the same questions just to reaffirm things for a long time. It took her a long time to get her brain muddle sorted.

But I mean to cut a long story short, she did a night in the general ward and then we, fortunately we have private insurance, so we took her then to the neighbouring private hospital. But again still missed massively the sort of quality and level of care that you got in Intensive Care.

Did you get the same level of care in the private hospital?

No, no. I mean I don’t know if you get the same level of care anywhere else other than in Intensive Care to be honest. But, you know, the Intensive Care nurses were popping in, sort of somebody would pop in every day anyway just to say, ‘Hi.

Into the private hospital?

Into the private hospital, on their lunch and stuff. Which was really nice.

When she was transferred to the general ward it was like chalk and cheese. It is absolutely unbelievable. And you are so elated that she is coming out of Intensive Care, that she is on the road to recovery. That is all you can think of. And then you go to the general ward and there isnt the level of nursing care. There is ignorance, in the true sense of the word, about the condition of Intensive Care patients. There is not the level of medical cover for the patient. The mix of patients is so dramatically different that it can be off putting and there are articles written on this, there is evidence to prove that this is the situation. And it really is.

And people leaving Intensive Care, I mean the evidence is there, even after seven days the amount of muscle loss that people have is incredible and after 49 nights, I mean she was physically a wreck, she couldnt walk or do anything. There was no proper physiotherapy on the general ward, she was given a Zimmer frame with no instructions, no support how to use it. There was no assistance to get her to the bathroom or anything like that at all. She had to struggle out of bed to sit in a chair if she wanted to because she was encouraged to get out of the bed. There wasnt any visit from the physiotherapist except for a flying visit which had to be organised. And there was no psychological input into trying to guide her through from the transition problems that she was facing after being in Intensive Care. And the enormous amount of sedative drugs that shed been on which do affect them, which we now know. So there was none of that at all in the general ward and I think that is a fair criticism of most hospitals up and down the country, talking to patient groups about this, the transition between the two is so dramatic it can have very serious consequences in terms of patient recovery. And it was the situation there to the extent that I arranged for my wife to be moved out of there fairly quickly.

But before I could do that, it was unbelievable the hurdles I had to leap through. She was transferred to the general ward under the care of a renal physician. She was in Intensive Care for respiratory problems. So to a simple logical mind she should have been transferred to a respiratory physician. But no, because on the day she came through A & E there was a renal physician on take and she went back to him. The renal physician had done ward rounds about two hours before my wife was admitted to the general ward and didnt come back for two days. The juniors were just running around like chickens with their heads cut off. So I couldnt get the renal physician back to check her out, anyway she said it is not my area of expertise, you need to speak to the respiratory physicians. So I tracked down the respiratory physician and got one of the nurses in critical care to lean on the respiratory physician to come and see her, who did a couple of days later. And as far as he was concerned, from a lung point of view, she was fine and she could go home. But the renal physician would have to clear it. So basically we got the renal physician in, so she cleared it and my wife was transferred to a private facility which provided physiotherapy and psychology. And the physiotherapy was geared particularly to functional respiration to get her back to normal. So she was there for ten days being treated privately.

Because hed become more and more depressed as time went on, we got to see the registrar at the hospital and he was should be moved to a room on his own, so he could get more rest. [My husband] has explained that since, the whole experience was unreal to him. He described it as being in the film The Matrix where everything in his life was artificial, and anything unfamiliar or contradictory to him was terrifying.

He had no memory of the accident and there was a big gap for him of almost three weeks in his life that he couldn’t explain. At the time I had no idea what was going through his head, but his mood swings became more frequent and were difficult to cope with at times. He hadn’t seen his consultant for a while and was really keen to start some more physio to improve his strength. I just wanted to really know what was going to happen and get an accurate prognosis. I’d gone in on the Monday morning after his parents had gone back home for a few days and tried to speak to somebody that would be able to tell me anything. But I didn’t really get any answers so that made [my husband] really frustrated.

Because of the deterioration in his mental state hed stopped taking some of his painkilling medication. Because he was now in a room on his own some of the nurses hadn’t noticed he hadn’t been taking all his pills. So he was getting a stockpile. Which we were obviously quite concerned about him taking, because he desperate by his situation in hospital. It was after that that he asked me to help him leave the hospital. I had severe doubts about this and I wanted to speak to someone about it. His parents were not there. He insisted he wanted to go there and then. It was sort of emotional blackmail I suppose you could call it, if I didn’t help him then he said he would injure himself by trying to do it later on, in the night.

So despite my uneasiness I did help him to leave the hospital. We just gathered up things really quickly and, still in his pyjamas, we left the hospital. We mentioned to the nurses at the station on the way out what we intended doing, so they wouldn’t think wed got lost. They insisted that we wait for a doctor to discharge us. [my husband] said he would wait. But he didn’t and had no intention of doing so because he felt that hed be restrained and have to stay there. It was just his mental condition at the time.

We would have, personally would have found it useful to have had a contact name, a contact person on the general ward. So that when we did have concerns, I think I said, my son and I, we had to almost demand to see the medical staff, the doctors, the consultant registrar. But I think had there been a contact person on the ward, as there was in oncology, as there was with the stoma care nurses. We didnt have that personal contact. I think that would have been a useful thing.

Someone who you could just ask questions to? Or a telephone number if you were at home –

Yes, yes.

– and you had a question that you could phone?

And someone who would then respond to that, or pass the question on, yes.

Did you ever come across any outreach nurses there on the ward?

No.

So really someone that, when youve got questions, you know who to contact either by telephone or in person because you’re there at the hospital?

Yes, yes, yes, that would have been useful.

The big hole I think that was left was, you know, I think more than anything when [my partner] came out or when she woke up, she could have done, well, we both probably could have done with a lot more support at that stage. Because I was trying to answer [my partner’s] questions as best I could. But it was really, and I remember saying to [my partner] so much that she really could do with some counselling. To sit down and have someone sit with her and [my partner] talk and ask the questions that she was asking me, but someone who she knew was qualified enough to answer, rather than someone who’d just sat in Intensive Care for four weeks and had been given a crash course in pneumonia. And that never happened.

And that was, I mean [my partner] would meet with the consultant that was in the private hospital looking after her, who was also covered the main hospital as well. And again, very, very nice guy, very, very qualified and, you know, inspired loads of confidence in what he was saying and doing, but he couldn’t give [my partner] much time. And that was a big hole I think, and if –

So that, that was after she came round, after she left the HDU?

I think whilst she was in HDU to a degree as well but particularly when she left, there was definitely a need for someone to sit with her and sort of say, ‘Well. Someone sort of like the outreach nurses at the start, but doing something like outreach at the end, is sort of just sitting down and saying, you know, ‘You’ve been through this, you’ve been through that. This is what’s going to happen now. It’s going to take you a long time. You shouldn’t get pneumonia like this again. You know, that’s something that goes through her mind on a daily basis, ‘Am I going to get this ill again?’ And, you know, that needs to be, that answer’s been given to her on multiple occasions, but it needs to be reinforced. So, you know, that was another big hole I guess.