But then carers are the nurses, the nurses are your carers, and people keep saying to me and in Intensive Care literature information for patients is patients/relatives. Well what do you do if you’ve no relatives? So yes carers are very, very important and I think that the follow up has got to be for patients and carers. And this vision I have of Intensive Care is that if the patient representative is involved from the beginning, the patient representative can get to know the relatives, and friends, and carers, and supporters, whilst the patient is too ill to do anything and offer them help and say, "Well look I’ve been in that very bed, that bed there was my bed, your husbands in the next bed". Or in my bed". And you can help them get through and you can tell them what you needed, what you longed for.

So you’d been in hospital for how long?

It was about ten weeks. I was missing for ten weeks, and all my friends here, all the elderly ladies and people here were all very worried and very concerned about me and they were all lining the, all out on the pavement when the ambulanced arrived and waving.

Welcoming you back home, that’s nice.

And I remember it well because it’s quite difficult to be, I’m second or third from the baby in here, I’m sixty-seven and there are people here of ninety-three.

Do you feel now that, you know, you’re back to the health you were before or not quite?

That’s a very interesting question because the operation that I originally went in for has improved my health in a lot of ways but I’ve been left with what I call bitty residual symptoms from Intensive Care and previous long term illness, right. If I was honest I don’t see, if you’re depressed, I don’t see the total answer is anti-depressants, and I would, I think a way to approach it is, that all this that I’ve been saying is scratching the surface. Because theres so much hidden, theres so much that the Intensive Care patient suppresses and hides. And I think the world is our oyster at the moment and that, you know, were beginning to make inroads into patient representation in Critical Care, and I think it’s going to take off in the next twelve months. I hope so, I hope so, it won’t be for the want of trying.

So in some ways you do feel your health, physically, your health is, better?

[Mmm]. Nods.

But then there are the residual things. In an ideal world, what might help with the residual things? Because some of these inroads you’ve mentioned, you’ll be making with support groups. Can you just tell me a bit, in the ideal world, how might the residual problems be?

I think something that we fail to take on board as people, as different persons, I think that something we fail to take on board that a period of critical illness highlights a lot of other things that have happened in the past. And you suddenly realise that a lot of things in the past haven’t been put in their appropriate pigeonholes. They’ve been put in the pending file and they’re just about hanging in there and you need to go into the pending file and put all these things that are pending from whatever it may be into the proper file. And I think that the way that that is going to be looked at, I think if you look at the, what’s known as the Pyramid of Human Needs and what people need, and I think we all want to feel warmth, and cared for, and fed, and loved, and looked after. And I think that one of the things that we can do with patient groups is give mutual support at the same time as gaining mutual support, I think that’s very important.

An interesting point here is to talk about some of the very personal side of it. One of things is that, all this time, I was catheterised so I had no problem with wetting the bed or anything, no incontinence problems. But then the day came to take out the catheter and they took the catheter out and I couldn’t understand [laughs], I really thought that as soon as it was taken out I would flood the bed. But that didn’t happen and it was a most awful experience because I wanted to empty my bladder and couldn’t.

And I remember a male nurse that was ex-army, I mean he was, you know, feet on the ground, very, very blunt, and he said to me, "What’s the problem?" And I said, "Look I want to go." I said, "Get me a bottle." And they propped me up against the locker and I got this bottle and I got myself connected to this bottle [laughs]. And honestly, all I can say is that when it actually happened and I started to fill this bottle it was, I shouted out and I said, "Glory Hallelujah." [laughs]. Because it was such a relief to have gone from being catheterised to normal emptying of my bladder. It’s a very basic function but when you’ve been in Intensive Care it’s very, very important.

Something that’s quite interesting that comes to mind at this point and about three weeks ago, I’ve never been back to Intensive Care at all and about three weeks ago I was trying to find a colleague of mine and it so happened he was in Critical Care so I went to find him and I was invited in. And I went in and actually going there and sitting down and seeing the Critical Care, where I was, I was sitting in, perched on the end of the bed space I’d been in apparently. It had no effect on me at all, I felt completely, sort of nothing, I was just sitting in a ward and waiting for my friend to come back, come and speak to me. And then all of a sudden an alarm bell went off, one of the alarm bells I’d heard of somebody’s machine alarming. And the smell came back, the sound came back, and the fear came back. [Gasps] "Where am I?" And I was immediately taken back two, three years to, this is Intensive Care, this is where I was, these people are going through, gosh weve gotta do something about this". [Laughs], you know, and I go on this roller coaster, you know, should I give up and grow begonias? Or should I fight for what I feel so very strongly about, I don’t know if it comes over but I do feel very, very strongly about this because I think patients have got so much to give, you know?

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?

And on one day I said to the physiotherapist when shed finished the walking exercises and they’d put me in bed, ’cause I was fast in the bed, I had rails, I wasn’t allowed to get out without support or help. And I said, "Would you leave the Zimmer frame at the end of the bed please and I want it right at the end of the bed that’s where I like it." And she did. And I thought, "Well with my electric bed." "I’m going to do a trick and I’m going to do what I call ‘Burial at Sea." And I got the bed tipped right up so it was raised up and I thought my weight will push me off the end of the bed. And as I get to the end of bed where the Zimmer frame is, I’ll hold on to the rails, I’ll stand up and I’ll be able to walk with my Zimmer frame.

So I got in my Zimmer frame, I did this off the bed, got in the Zimmer frame and bang, bang, bang and I went all the way up the ward and down the corridor. And I was going to Trust Headquarters, no matter that I’d got pyjamas that didn’t fit and my dressing down wasn’t fastened, I was going to the Trust Headquarters. And I go so far down the corridor and I met one of the ENT Registrars and they said to me, "Where on earth are you going?" And I said, "Well I’m fed up with this place. I’m going to Trust Headquarters because nobody’s helping me with my tracheostomy. I’m supposed to have an appointment to see ENT and I haven’t seen them and I jolly well want to know what’s going on and I’m not budging." I says, "That’s where I’m going." She says, "Well I’m from ENT, I know you, I know your case. Come along and well take you in there." And they took me in and I saw the Consultant. He was there, and they sorted it all out for me and I went back to the ward.

I suppose I was classed as a naughty boy and they then put fasteners on the bottom of the bed as well so I couldn’t get out of the sides and I couldn’t get out at the bottom.

And eventually all this came together, I went to a meeting of Community Services in a room near the ward and I was planned for going on a home visit where the occupational therapist would assess me for suitability for going to my flat. I live in a sheltered flat and that was a great help because they knew that I had a red string I can pull for assistance, for emergencies. And the day appointed came to go home and it was cancelled because they hadn’t booked the right transport and they hadn’t asked the right person’s permission. I was absolutely beside myself, I was livid. And I asked to see the Head of the Service, and the Head of the Service of Occupational Therapy came to the bedside. I said, “Look you’ve looked after me very well while I’ve been at this hospital but now you’ve made a cock-up, what are you going do about it? To get a patient to the stage were they’re dressed and waiting for the ambulance to go home for a home visit and it to be cancelled. I said, “I think it’s terrible.” I said, “And I hope you’ll take notice of that.” Eventually I came on a home visit and eventually I was able to come home.

The next thing I remember I was semi-conscious and I couldn’t speak, I couldn’t move, I could hardly feel anything that was going on. I was just lying there semi-conscious with a very, very deep sense of cosiness, a very deep aura around me of safeness, warmth but I haven’t a clue where I was. And I could hear people echoing and people talking and I was drifting in and out of consciousness and eventually I opened my eyes and a friend was by the bed. And she said, "Don’t try and speak".

And there I was, in this bed, and over a very short period of time I accepted where I was and I realised that I had tubes coming from everywhere, pipes, wires, noises and every time I moved one way, zoom, the thing on my arm took blood pressure. I moved that way, zoom, "Oh". I thought, "Good heavens if I move my legs what’ll happen?" I couldn’t move my legs, "Oh hell I can’t move my legs, oh good grief I can’t move, nurse I can’t move my legs, oh dear me what a shock this is, oh how’ve I got in this place? Oh good God." And then I learnt to be able to twist myself to the rail and my nursing told me that I had to do that because they had to clean me, and wash me, and wipe me and whatever, I was incontinent. I was catheterised and because of bowel problems I had at the time I had nappies and this sort of thing all stuck with sticky tape, a little bit like these sort of things you see for babies, [laughs] all fastened and clipped. And there I was, and I became aware of things that I’d never become aware of before. I became aware of sound, I became aware of smell, I became aware of touch. And I became aware of a very deep sensitivity, a very deep awareness of people around me and people trying to help me through this difficult situation I was in. And eventually I learnt to be able to move a little bit, I understood that I was tube fed, I was medicated by injection, by infusion or drip. I must have had some big sort of collapse and I realised that I was seriously ill, or had been seriously ill, I was still seriously ill.

And one of the times when I was sort of very, very semi-conscious I could hear Perry Como singing and he was singing, you see here we go again, the emotions come in and it’s very difficult. He was singing ‘Catch a Falling Star. And as he was singing this, I had this vision, like in a tunnel of seeing people and people came into the tunnel, they went past holding a star, and it was all the different people in my life. And it was though I was on the brink of either coming back to the real world or going somewhere else. But there was no fear of it, there was a very deep cosiness and very deep sense of satisfaction, a very deep sense of well-being.

And eventually I went through all this and the time came when I was going to move again and it’s very, very difficult to look at the, how can I put it? The sort of sequence of events. But I was eventually told that I was going to move to an ordinary ward and I thought this was a wonderful thing to happen because it meant that I was getting better. And by now one of the things that I’d realised is that I’d had a near death experience and because of that I had a very strong will or a very, very strong feeling that I had to try to remember what was happening because when I got better, by hook or by crook I was gonna get and do something about this, something for people who are patients in Intensive Care.

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.