Have you got any messages for health professionals?

Ah yes, try to standardise the procedure for the replacement and the understanding of catheters, particularly the suprapubic catheters. Try to have a standard procedure that people can follow, so it’s written instructions which they can look at and learn. So that they all do it more or less the same way, the way it should be done. Because so many doctors differ in their understanding of how to insert a catheter, and even nurses, and about inserting catheters and the way to take them out, the way to put them in again, the way to realise that they’ve gone in sufficiently without keep trying to push them and abrasing the membranes of the bladder which incurs, which makes bleeding begin.

You’ve had particularly difficult experiences with GPs?

Yes.

Do you think GPs should have extra training?

Well I certainly do, yes. I certainly do, a lot of extra training if they want to do that procedure. Some of them shy away from it. they’re not confident enough to do it, they shove it out, they shove it out to the nurses and the nurses are reluctant to do it. So they pass the buck and pass the buck until you find out nobody really wants to do it for fear of making a mistake and getting sued or something like that, under the present climate of litigation in that sphere.

Have you ever looked anywhere for information about the catheters or bladder problems, or been given any?

No specific bladder or catheter information that I can recall. Rachel [my wife] finds leaflets in various hospitals. She might have come across something about the catheter or specifically about SPCs [suprapubic catheters] but I don’t think there’s much literature on SPCs as far as I know.

So you’ve never been given anything, any leaflets about them?

Well, I’ve been given various advice by different doctors, different consultants, different nurses, and the advice often seems to conflict. So I don’t know what to believe really, basically.I seem to have multi various choices, depending upon how I feel, how I’m reacting, what sort of symptoms I have on any particular day, what strange anomalies have suddenly occurred, the whole thing is a bit indefinable and imponderable.

I’d even forgotten at that stage that I had a urethral catheter because there was hardly any sensation. But a little sensation came back, as time went on. And I suddenly learned from the consultant that I was going to have what they called a SPC’, which was a suprapubic catheter. And I did my best, although I was still feeling very weak and not breathing as satisfactorily as I might because my SATS were quite low, and I was liable to pass out if I sat up too straight in bed even.

I went through all sorts of funny palpitations and had odd feelings of losing consciousness or going in and out of consciousness. But I did have the strength to try to contest that transferring from the urethral catheter to a suprapubic catheter, as it was called.

The consultant said, Oh no, no it’s standard procedure here. If you have your urethral catheter for too long it’s liable to infection. So we actually insert this new catheter into your bladder under local anaesthetic, or some modified form of local anaesthetic And a date was arranged for this and then I was transferred to the table.

Did you say that you’d tried to argue against having one?

Yes, because I didn’t like the thought of somebody planting something in my bladder forever. Because I anticipated the discomfort and the problems it might cause.

Why does the consultant think you’re more likely to get an infection through a catheter through the penis than a catheter through the abdominal wall?

I’m afraid you’ll have to ask him that because I don’t know. He said, It is our policy to do thi, as if to say, Well I don’t care if you agree or not really. And this is what we are going to d.

So one day this was arranged, so I went down and the fellow from the bladder department, what do they call it now?

Urology?

Yes, the urological man performed this operation.

Yesterday they [carers] suddenly realised that there had been a blister. They didn’t mention it when they were cleaning me in the morning and I can’t see it, I can’t see when they’re cleaning me what goes on down there.

They said, Oh, there’s a hole formed, the blister, the blister has burst and there’s a cavity formed around the hole that the SPC [suprapubic catheter] goes in I said, Well what are you going to do about that Er, well we’ll spray it possibly with, oh, no, no, we’ll put some saline lotion and some Aquacel on, which will fill the hole and put the new dressing on. And we’ll see what happens

But quite often when I’ve gone to the hospital to have it [the catheter] changed, they say, Well this hasn’t been cleaned properly because there’s too much puss around the tube where it comes out of the body Because it often, there’s a yellow emission, which I don’t know whether that’s a sign of an infection or whether it’s just a quirk of my particular case. I don’t know. Obviously everybody is different and reacts slightly differently to even the same catheter.

Do they clean around it every day?

Well, they used not to but more recently I think the hospital wrote to them here and said it must be changed every day.

Cleaned every day?

Yes, the dressing taken off.

Oh, the dressing.

Taken off and around the tube cleaned.

Do you go back to a hospital to have that done [catheter changed], or do you have that done here?

Well, it’s a fairly long story. Initially when I arrived [in the nursing home], they said, Yes, of course, yes there’s no problem about changing catheters. Our experienced staff know how to do things like tha. Then, when it came to my first change, they started scratching their heads and looking at it, askance, Hmm, don’t think I could trust myself changing that, we’ll get the GP to do i.

So what happens, yes, the GP comes and the first time, although his hand was shaking very badly, I think he had some neurological problem. I thought, Ooh this isn’t going to be any good with the hands shaking like that Eventually he concentrated and his glasses fell off and he eventually managed to get it in and inflate the balloon. And said, Well, that’s no problem that. So once or twice the GPs did that.

The third time I believe it was, one of the main GPs at this practice came in and was looking even worse for wear than he usually does. He had the nurse with him. He said, Well, don’t forge, and I, no I reminded him, I said, don’t forget, I was told by the consultant you must put the new one in immediately you take the old one out otherwise there could be serious problems. The hole will start to close up and he won’t be able to get it in

He said, Yes, ye. So what does he do? Yes, he didn’t know the size I had, although it was on my care sheet, at least I think it might have been. It should have been size sixteen. So they turned up with a size fourteen and they said, Well we haven’t got the sixteen

Then eventually they found a sixteen at the top of a cupboard somewhere, or a bottom of a cupboard. And he deflated the balloon, took the old one out, thought, Oh this is good, this is eas. Then he was just about to put the new one straight in when he dropped it on the carpet you see.

I said, Oh you’re not putting that in are you So the nurse, poor nurse, he said, Hmm, get another on.

So the nurse sprinted, I mean she wasn’t a professional sprinter, she was Romanian and quite fit. She sprinted down the corridor and searched various drawers, eventually, a little belatedly, came back with another similar catheter. And with this one, I don’t think he dropped it again, but he said. I can’t get this in, I can’t get it in nowou’ll have to go to hospital

So I went to hospital and fortunately somebody eventually managed to get it in that first time, at the local big [Hospital] here. So having spent, oh I think probably a day and a night in the hospital because of this incompetence on the part of the GP, I was all right for another six weeks.

it’s quite an extensive, problematical thing and a constant burden, as I say, because there’s always some sort of pain, whether it’s mild pain or worse pain.

In the catheter area?

In the bladder, catheter area, yes.

Do you have bladder spasms?

I have spasms naturally from my spinal injury. I don’t know about bladder spasms particularly, but I thought a bit like having an epileptic fit sometimes, you just shake. This hand, you see, if I pick up the hand, I can’t do that without the hand shaking. So it’s a neurological problem as well, which exacerbates any bladder problem, catheter problem.

I can feel the left side of my body, well it’s a bit hypersensitive. I can’t move this arm, apart from doing that. I can move, I have movement, slight movement in this arm, although the hand’s mangled and I can’t write properly. I might be able to do some sort of sort of baby writing with this hand.

So you don’t have to take any specific medicines for the bladder?

No, I have to take baclofen for the spasms, it’s a tablet called baclofen for the spasms. Ah yes, I do take oxybutynin