Interview 35

Age at interview: 33

Brief Outline: Was admitted to intensive care in 2004 because of Guillain-Barre Syndrome. This is a rare disorder of the peripheral nerves, those outside the brain and the spinal chord. Spent 17 days in intensive care and about 1 week in general ward. Was then transferred to rehabilitation ward in another hospital, and spent about 3 months there.

Background: Occupation: sales director. Marital status: married. Number of children: no children. Ethnic background: White British.

He greatly valued the physiotherapists and will never forget the support he got.

How long were you on this ward for?

I was on it for about a week, the Intensive, sorry the physio that I'd had in Intensive Care was the most excellent, the lady was brilliant and I'll probably never forget what she did for me. She was great but obviously she was upstairs in Intensive Care. I was given or allocated to another physiotherapist, who again, was totally different personality and character but was great because she would be really quite demanding of me. And the things I should be doing or shouldn't be doing, she was fantastic and it's amazing how much progress I made within that week on the second ward. It was great. 

He couldn't walk, drink or talk when he came round but valued being taken outside for fresh air ...

I can't say that these things happened in a chronological order, but things I remember from Intensive Care were coming round and trying to find out where I was and what day it was, because they said I may move or I may be under for anything up to a week. I remember the staff were, without exception, fantastic. I remember being shaved by a lady who was just brilliant. I mean, being shaved for the first time by somebody else, was quite worrying, I was aware of things like that. 

I remember people coming to see me and my family at the end of the bed and [my wife's] brother who's also a good friend of mine was, and because he wasn't laughing, that's when I suddenly thought, oops this is serious. I remember trying to mouth to [my wife] a question or a point or something and I've no idea how she did it but she actually understood the majority of what I was trying to say. I think, a couple of frustrations that I had when I was in there was I couldn't walk, I couldn't drink. I remember several of the consultants would walk round with a big cup of tea with 'tea' written on it. And I drink quite a lot as a person and I found that really frustrating. But it became a joke, you know, between me and the doctors. I don't know how I did because I couldn't laugh because you know I couldn't talk, but it did. But I think two major things, one, they allowed me to go outside at one point which was just the most amazing feeling of, it was blue sky, it was fresh air, it was such an important mile stone. I think [my wife] had explained that I like windows, fresh air and everything else, so they actually took me outside. They moved my bed position from one looking directly into the ward, to one that was in at an angle so I could look out a window. I mean that made such a difference to me as a person. 

He was still too weak to move or lift things when he was transferred to a ward and would have...

Wife' So 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. 

He sometimes felt frustrated when his progress was slow but a huge sense of achievement when he...

The rehab unit was great. It was a very structured environment. I didn't really understand why they got me to do some of things they did, tests that made no sense. But I just put that down to the fact they were doctors and I wasn't. So my time there was quite structured. I'd have an hour doing occupational therapy in the morning, which went from filling out a questionnaire about how independent I was before falling ill to where I was now and where I hoped to be in the future.  

They would then get me to stand in a standing frame to try and build up the strength in my muscles and play solitaire, which I've still not cracked so if anybody knows the solution, that's a good thing, to playing with wooden blocks and puzzles to get your brain and your co-ordination working together. 

In terms of the physiotherapy, that was really quite intensive. Within my first week there, because I was born with cerebral palsy, I remember saying to the physio, "Well hang on, stop trying to correct what was there before, I just want to get back up on my feet and walking the way I was." Because at least I could walk. And she was quite a strong character and she said, "Look we're trying to do the best for you, so if we can correct some of the problems you had from your previous illness, then we'll do that at the same time." So I sat corrected and over the next three months she and her team did a phenomenal job, frustrating at times because you don't see progress every day and you think, you want to get better, you want to get fit so you're up and standing etcetera. But you can't and I found that very frustrating.  

It was something that people just sort of, you know, stop trying so hard and just let your body do the work. But the amount of progress I made in what was a relatively short period of time, was phenomenal. Taking your first steps again, firstly in the hydrotherapy pool and then actually with a frame and then, you know, without the frame and walking arm in arm and then independently, the sense of personal achievement and happiness was absolutely phenomenal. It's indescribable how good it felt being up and walking. 

His wife found it difficult spending all day at the hospital, and then coming home and phoning...

Patient' The one thing I would say on this subject, looking at it from [my wife's] perspective was you, from memory, got a lot of phone calls and a lot of people wanting to know how I was getting on which was, you know, lovely and it's nice to know that there's that concern out there. But I think when you were coming home, having spent the day with me in hospital, you were absolutely exhausted and you have sort of, eight or ten messages on the answer machine, one of the things I seem to remember you saying was, you'd get in and all you actually wanted to do is have some supper and have a bath and go to sleep, for example. And if you're not careful, you spend the whole hour that you've got to yourself, picking up the telephone and phoning the relevant people.  

So the advice I would give, looking at it from a different angle is almost, don't rely on the relative to do all the communicating because I think, certainly that was a bit of a pressure.  

Wife' Yeah I would certainly say that you know you, if you're a married couple and you've got two families and friends to communicate with, is just to have one key person on either side of the family, so you've got two phone calls rather than twenty phone calls. 

And they can tell other people?

Wife' And they can then spread the word. I mean I suppose the trouble with that is that it would be like Chinese whispers, with the story that you tell at the beginning, might, when it reaches, the last relative might be, you know, completely different. But at least there's communication going through.