And they took me to the general ward, oh God what an experience that was. Ward, bed right down at the bottom, pushed me right down there in the corner, put my curtains round me. I thought, "Well this is it." I was safe, I was protected, I was looked after, and here I was in a bed in the corner with curtains around me, forgotten.

And I’m pausing here because it’s so important because this is the salient part of the whole story.

What a shock it is to have woken up in Intensive Care, in Critical Care and to go to HDU. You come to terms with all that, you come to terms with all the care, you come to terms with the fact you can’t move, you can’t eat, you can’t speak, you can’t move your own bowels, you can’t move your own bladder, you’re completely reliant on machines. And then somebody makes a decision one day that they’re going to come and take you in a bed, along a corridor and put you in a bed, in a corner of a ward, with the curtains round you. And it was completely and utterly unbelievable because I was still being tube fed, I was still catheterised, and I still couldn’t move. And I was aware that I was one patient amongst many in a very, very, very busy surgical ward.

So the next day he was a little bit better, and I think it was probably one of [my husbands] low points. He was sitting in the chair, he felt sick, and because they’d been giving him sort of hot liquids, he had diarrhoea. Now that’s not conducive really, visiting time, you have a curtain separating you. [Participant’s name] is now, a curtain around him because he feels sick and he wants to go to the loo, hes sitting on this commode with dreadful diarrhoea, being sick and theres a woman literally two feet away from him. And it was so embarrassing, and I personally think it was degrading.

So I called the nurse and asked if we could help because he was sick and I tried to get him cleaned up but I couldn’t. We had to wait a long time. a) It wasn’t nice for [my husband]. b) It was awful for me. And I’m sure for the people in and around it was absolutely awful. So from that point of view that was very, very distressing. But they did, you know, they did look after him reasonably well, but they just don’t have the facilities or the staff to do it.

Intensive Care is exactly what it says on the tin. It’s, if you’re really ill, they’ll look after you till you can be looked after in the ward. And in fact the transition, that’s the worst thing, is the transition back to the ward because you’ve gone, because when they say Intensive Care it really is, theres someone there all the time. And you get back on the ward and you might not see a nurse for hours. And at the beginning, it was, of course, it can be worrying. And also I, maybe wrongly, but I also worry about the competence.

I know that in Intensive Care the people are extremely competent, extremely professional, just by their manner and how they go about things, it’s not because it’s Intensive Care, it’s, through the experience of being there, the people are wonderful. It’s not true in the ward. They made a mistake with me this last time which actually caused me to go into Intensive Care, on the ward. A drip was allowed to run out. Now that shouldn’t have happened and things like that wouldn’t happen in Intensive Care. I don’t blame people for what happened because of the pressure people work under but it’s worth bearing in mind.

Theres a certain age group of nurse, who’ve been nurses possibly for about twenty years, who’ve just had it and they don’t, they’re not good. They have no, they’d see the patient as enemy, for some reason, that’s how I looked at it. They were someone to be dealt with as quickly and as abruptly and as curtly as possible. But then theres a whole new breed of nurse and a whole new breed of doctor and a whole new breed of consultant, too, that was my biggest relief. The consultants are now human beings, rather than golf club members, who want to get back to their private practices. They’re completely different now, because I’ve suffered under their old school of consultant. But the ones I’ve had and the ones I’ve seen now are just wonderful. About thirty years younger than consultants I’d seen before.

Look on the whole, quite humanist all of them, that they look at it a holistic way which people hadn’t been doing, it’s taken a long time.

But I’ve got say, “Beware some of you medical staff, that you can so easily give the wrong impression. You can so easily give the impression you’ll be glad when your shift finishes. Or that you’re looking forward to your lunch break or your tea break, and you’ll come back to see to your patient afterwards.” Now that is scary. And it was scary early in my stay on the general ward when I was still dependent on being hoisted both out of and into bed. And if you don’t get the timing right, as a patient, you find yourself literally stranded.

And the more tired I became, the smaller became my comfort zone. And my comfort zone certainly was not the chair at the side of my bed. That was a high-risk area to be in. I felt so vulnerable and threatened. Visiting time had finished. It was approaching the time for outgoing day staff and incoming night staff. And no matter how I pleaded, this was experienced on two occasions, I didn’t get put in, back into bed until the evening shift had come on, when I had spent twelve hours in the chair at the side of my bed.

And on some occasions that occurred when it was not possible for the physios to get to me. So I had been chair-bound for twelve hours. And that is very, very frightening. Nobody there to give you reassurance. Your family has gone, those who were sort of giving positive support. And you realise that, you might, I realised that I didn’t like necessarily all the nursing staff. There were some I really adore because I saw that the quality and the love and care shining from them. But I was ultra-dependent even on the people that I didn’t like or took an instant dislike to. Some of which couldn’t be substantiated. But that was feeling, and feelings are difficult to handle. And I realised I had to speak in a most genteel way, almost at times in a grovelling way, to get the attention of staff who would not normally show me the care that I felt that I needed.

How did you feel about going onto the general ward when you were in Intensive Care for eight months and then moved to the general ward, how did they move you?

Patient’They moved me by, on the bed. It was quite

WifeDifferent [laughs].

Patient’Dramatic really, yeah. It’s like comparing going from a five star hotel to a bed and breakfast, because that’s what you’re getting in ICU, you’re getting five star attention. And obviously when you get down on the wards, you’re been used to one nurse sitting there, especially with my hands and everything. I couldn’t talk, doing every command and, “Can I have a cup of tea please?” And, “Could I have a drink please? Could you give me a drink please? Could I have something to eat? Could you turn the paper over for me while I’m reading?” Whatever I, “Could you just put the television on me? Can you change the programme over in the television?” It’s just like having a butler, well actually a couple of the men of a night time especially said, “When we look after you [my husband] of a night time, were not nurses. Were butlers.” ‘Cause that is what they really were, they was just looking after…

WifeFetching and carrying.

Patient’Fetching and carrying that’s what I meant, they were butlers. So going to another ward was different but they, this business I mean like they did tell me, you know, they told me, “[Participants’ name], you know, it’s gonna to be nothing like here.” Most men when they, or ladies, patients when they go down there still most likely, perhaps a little but still, not unconscious but…

WifeUnwell?

Patient…unwell and not really with it whereas I was perfectly okay. And they said to me, “You’re gonna notice the difference.” And I said, “Yeah I know I will.” But theres no comparison. There again the nurses on both wards I went to were terrific, the standard of nursing is very good but you can’t compare it to ICU.

WifeNo, theres one patient-one nurse, and when you go to the ward it’s four nurses, six nurses, twenty-four patients. So, you know, you do have to wait longer for things.

And I said, "Well if you’re the Dietician, I’m low on potassium and I want bananas." "Oh." She says, "Bananas isn’t my department, that’s the Ordering Department, you’ve got to get onto the Ordering Department." And I never got the bananas. The only time I got bananas was when a friend brought me some. And things were like that. You’d gone from this hugely protective Critical Care to this sort of hit and miss uncoordinated service. There was nothing wrong with the individual care, you know when somebody came to empty your urine bag, they did it properly, they didn’t spill the urine all over the floor. When they came to do your blood pressure they did that properly, but were they really asking me, as a patient, how did I feel? Once in a blue moon the Sister would come and sort of bounce past and say, "How are you today?" And you say, "Well I’m alright." You know, what more can I say?

One of the things that is quite interesting and something that I’m a little bit loathey’d to say, but I have to say it. One occasion when I’ve just, when I was going through the awkward period of going to the general ward and I was very frustrated behind these curtains because it was an emergency department and I had, in the time I was in there I think I had six people in the next bed to me, and two of them were stabbings, people who’d been stabbed. And when I was going through that period I was seen by part of the Follow Up Team who did an assessment on me and said I was depressed and I had to see the counsellor. I had to see the Psychiatric Services, they were going to arrange it. And I didn’t necessarily agree with that because I wanted to know more about it, I was worried about it, and nothing was ever done from that day to this. And one of the things that I feel very, very concerned about is that I have all this wonderful care and I don’t think I have ever seen anybody with, what I call, psychiatric mental health expertise, and how can that happen?

But once I went back in that ward, I felt myself going downhill – the depression started. Because I wasn’t getting that, well they can’t get individual with everybody. There was a lot of people in there. But I think theres a lot of things that they can keep a watch on, if someones distressed, you know. And then you didn’t get your night drink, which upset me. In the first ward you were getting a night drink. They’d bring the trolley round. You could have tea or coffee or Ovaltine, or chocolate or Horlicks, and I have Horlicks every night. The second ward I’m lying there waiting for my night drink. No night drink. Cut backs. I mean it’s silly. A warm drink, last thing at night is, you know it sort of relaxes you, makes you feel that bit better. I felt that I’d been deprived of everything.

And how often did the doctors come round in intensive care?

Oh, every day, the doctors came round. They were very good. Yeah, I’ve got no compunctions – you know, at all about – I’d give them all good credit. It was the nursing, I think that – I mean one sister, she came to do something, and I hadn’t had a cup of tea. I think the trolley had been and gone or something, while they were seeing to me – and I said to the sister, “Oh I could really drink a nice cup of tea”. She said, “I don’t do tea”. And that put me in my place.

Where was this, in the general ward?

Yeah. You didn’t get a lot of – I mean how long did it take to make a cup of tea? And they said, “Try a bit of toast”, and the toast never came. They went away and did something else. You know, they’re not – their minds are elsewhere,

WifeSo we went to a ward that had one staff to six or seven patients on the whole, varying degree of illness, and it was so frightening because they didn’t, we felt they didn’t understand what [my husband] had been through. He went from having an electric bed so he could adjust his position, because he still couldn’t move his limbs at this stage, he was literally allowed to leave Intensive Care because the tracheostomy was out and he was able to breath on his own. Apart from that, all the other symptoms were exactly the same, he still had numbness from the neck down, so he was put on to the old style beds, the rigid beds, so we had to fight for an electric bed because he just couldn’t possibly sleep on that because you can’t get any manipulation at all to the body. And it was just, it was an awful experience to be honest.

For the first couple of days, it took a long time, we were both in tears constantly, and that’s one thing we put forward to the hospital is that really to come out of an Intensive Care unit there should be a unit available for that transition period, just so you get used to not having the dependency of the nurses.

Patient’The staff were very willing and very pleasant, but didn’t seem to know my limitations as it were. And you’re in a new environment, your bed isn’t the same, your equipment isn’t the same in terms of what you had around you. One of the symptoms was that my body couldn’t regulate it’s own temperature so I’d go from being very hot to very cold and vice versa. Up in Intensive Care, they knew that and they had fans around me and additional blankets.

On this the second ward, they didn’t have that equipment or that knowledge of my symptoms and I think what summed it up for me on the first evening was, the nurse came round to pass out my medication and it was just put on my tray table and I couldn’t pick it up. And I didn’t know whether I should take it then, I should take it before I went to sleep or whatever. But it was just literally doled out, put on the table. I could talk at the time but not very strongly and had [my wife] not been there, I’m not sure how I would have communicated with the nurse to find out. And it was [my wife] that had to give me the tablets.

To the credit of the nurses on the ward, after a couple of days they realised what I could and couldn’t do, so they would feed me my breakfast etcetera.

They [family] felt that the doctors made a cock up of it, because they was thinking why did I go to ITU in the first place? And obviously with the MRSA problem as well, when they found out that I contracted a form of that as well, they were saying, okay why is my older brother – that is my brother talking and saying, “Why is my brother catching MRSA?” It’s a fault from the hospital. So we were looking at the legal option, but it was decided by me, that that wasn’t really the option for a number of reasons. Because prior to this incident the level, the standards of treatment that I received at the Hospital [hospital name] was of a good standard.

But one thing – I’ll be honest with you, the one thing that really, like, not shocking to me, but I wouldn’t have expected it – was while I was – I came from ITU and I was placed back in the general ward. And I just overheard a conversation between a doctor and a nurse, regarding me and it was like, the doctor was explaining to one of the nurses what he requires, what needs to be sorted out, and I was just shocked because he said, “Be careful with that one”. So, now, if hes saying be careful with me, then what is he doing with the other patients? Does that make sense?

So that kind of thing I am shocked about and it is disturbing, but I don’t know, I think I’ll just let that one go.

She [his partner] noticed that when I was on the ward to start off with, a lot of the nurses weren’t wearing gloves. Shes got [written down] “Nurses, no gloves, changing bed sheets, especially washing down when patient has left and eating at same time.” She noticed the cleaner sometimes always eating something and, you know, when they changed the linen not having the gloves on or whatever. Again this is something that she should be saying to you, not me, because she was noticing it all the time.

This was on the general ward?

Yes, this was on the general ward. She noticed that on some of the wards there was a nurses’ station with cups and sweets etc that are eaten throughout their shift. Like the cups had been used, so obviously the nurse had had a cup of tea or something, then shed put it down and go and see a patient, then come back to the cup of tea, shes not wearing no gloves, you know. That’s how it goes on.

Again, “No, no gloves from, on many occasions from patient to patient, nor the washing of hands.” She did notice it a lot, she noticed it a few times when I was in ICU, where they come up and change like the catheter and the bag with no gloves, and then go and see somebody else.

I can’t complain about the care that I got at all, it was excellent, even on the wards. You asked for something, they would do it and you’d just have to wait but that’s just the ward isn’t it? Most wards are like that, they haven’t got the staff that they’ve got on the Intensive Care Unit. They’ve not got the resources and you haven’t got your own nurse. But in a way you need that because you need start to do more for yourself, simple things were hard to do, for example, going to the toilet or having a wash. You realise that you’ve got to get up and do it yourself, and I’d even have to wait for painkillers. But that’s nobody’s fault, that’s just how it is.

Yes well when I was taken out of intensive care I was put into one of the general wards, and was well looked after and well catered for. And I felt, and I have felt ever since then, well in myself. You know, from the time I began to realise that you know, had things on the mend. I haven’t felt ill in myself at all. I’ve had an amount pain, you know, from my feet but I feel in myself I’ve felt very well. I have done all the way through.

Was this all on the NHS or did you also have private healthcare?

No, all on the NHS and people knock the NHS but I’ve got nothing but, you know, the highest praise of them because I couldn’t have been better looked after even if it’d cost me hundreds of thousands. Yeah.

Have you felt that you’ve had all the support that you’ve needed or are there areas where you felt there could have been improvements?

Oh no, no it couldn’t have been any better at all and I really mean that. The support I’ve had and the help I’ve had, you know, and the treatment I’ve received couldn’t have been better anywhere really.