When I’m out, usually I do a good flow, and in the morning I’ve got a urine bottle and all I do is I sit on the end of the bed, push the catheter in before I get out of bed, on the edge of the bed, and then just take it and tip it away. It’s simple, it’s so simple I mean I can’t think of anything more, and it doesn’t take, it doesn’t take long. And you can do it in your own privacy; this is the beauty of it. And I mean nobody would look at me and say Oh you, you self catheterise, because they wouldn’t know.

I take a catheter out with me. I mean I have to use it several times but I wash it and clean it because you can’t take a whole load of them out with you. And I find it dead easy cos I can go into the disabled loo, push the catheter in. I either take a little bottle with me if I can’t get over the loo, or I can just do it over and then just wash it, put it away until [next time], and I might use it a couple of times. Whereas and if I start feeling a little bit uncomfortable I then go straight into the loo, it’s as simple as that. And it is so simple. I mean it’s unbelievably simple, and what I do is, I do have a little thing of gel because sometimes it gets a bit dry and I just put a little bit of gel on the end of the catheter, no problem.

Are there any problems at all about self catheterisation?

For me no. No problems whatsoever. I can honestly say that with all sincerity I have never ever found any problems. I’ve never found that; I mean the only problem I’ve got is if I forget to take one with me. That’s the head going not right. You know.

So you don’t get a sore penis at all when you’re passing [the catheter]?

No, no, no, never had any problems that way at all.

That’s good.

I’ve, I can honestly say, I may be one of the lucky ones I don’t know, but I can honestly say it’s been the success of my life.

So eventually after a series of tests I was diagnosed with MS. And of course I was confused about that, because there weren’t any publications at that time. I was able to continue working, managed to carry on working for the next ten years, but I had to finish [work] because I couldn’t stand for long periods of time. And towards the time when I had to finish work I started to need to go the toilet more frequently and especially as I was driving around the county; I’d have to think, Well where is a toilet? And how am I going to get there? And can I get access to it? So yes, that worked okay, but also when I’d been to the toilet and got back out to the car I felt I wanted to go to the toilet again. And I’d go back in and I’d either not want to pass water at all, or end up having leakage before I got back to the toilet itself. So that was very embarrassing because I couldn’t really continue my job if I was going out to lecture people on fire safety, I couldn’t really stand out in front of them with my trousers with a wet patch round, and difficult to explain it to somebody so it was very frustrating at that time. So as I worked in the hospital situation I knew the lady who ran the continence service and I asked her if shed find time to see me so yes she did. And we had a talk through all of my symptoms and she said, Have you tried intermittent catheterisation?

To go back to actually inserting the catheter.

Yes.

Is it quite easy to tell when you’re in the right place?

I think it’s the feel, it’s to do with the feel. As you start to insert the catheter it’s useful to have my left hand, I’m right handed, to have my left hand as a balance, and I’m not circumcised so I need to pull the foreskin back and sort of hold that back and balance the catheter, as I’m watching the insertion of the catheter, and I find that as it’s towards the upper part it goes in far easier.

Okay.

There are occasions, I think its called spasm, when you start to insert the catheter and then when it gets to the opening of the bladder it will not penetrate. That can get very frustrating. I’ve had some episodes, but they’re probably the minority, where you end up pushing and pushing and trying and trying, and it seems the more you try, the more you push and I think I got up to about seventy was the amount of times I’d tried to insert it.

Seventy?

Seventy yes, yeah, yeah. Eventually it just sort of released and I was able to insert it and drain my bladder. But they are the exceptions to the rule, 95% of the time or 99% of the time the insertion is quite straightforward and you’re able to drain your bladder fully.

For males, of course, the catheter is actually quite long. it’s probably about 14 in-, 16 inches long. It sounds, because the urethra actually goes an awful long way. The insertion by the, you do need to be, I won’t say dextrous, but you need to have the use of both hands.

And so basically you’re getting yourself in the correct position and gradually sliding the catheter in through the tip of the penis. It goes in fairly okay providing you get the right size. So it’s actually vital that you get the right size catheter diameter.

Is that trial and error, the right size?

Well, you get sorted out with one when you first start off. But obviously, as you use them, your urethra actually gets bigger. So you might need a bigger one. Also the smaller they are, the longer it takes to actually empty the bladder. So, anyway I mean.

If it’s too small, you’d leak around it, might you?

You’d probably leak around it. The main issue is when you hit the sphincter where you enter the bladder. And actually sometimes getting through that can actually be a problem, because you’re so used to holding yourself back. Actually getting through that can be, you can shove too hard. You need to be gentle, maybe cough a bit and just probe a bit.

The catheters I had were the ones which were already in a saline solution, so I didn’t need to muck about with putting water in them or anything like that. Basically I opened the packet and took them out and inserted them.

However, it’s very important to put, use hand gel on your hands and gel on your hands to make sure you are as clean as possible when you’re inserting the things.

So you don’t have to wear sterile gloves?

No, no. it’s basically keep your hands clean, give them a wash, put a bit of hand gel on and away you go. Much as a nurse would do when treating a patient. And then afterwards, wash your hands.

So once you get in the flow it’s not difficult and one shouldn’t be frightened of it. it’s not, I know people will be frightened because it’s inserting foreign bodies into probably a very sensitive place. But actually you don’t feel a lot. Because the catheters are self-lubricated, so you don’t feel a lot.

When I went to the toilet before I went to bed, my bladder didn’t fully empty. Then overnight it was still producing urine anyway, the kidneys are always doing urine production. It does slow down but it’s still doing it. And essentially it was full and the bladder didn’t cope with it. So it simply released, causing enuresis [inability to control urination].

And did that, over time, get worse?

Yes it did, it progressively got worse and worse.

And how did the conversation come about with the consultant to, you used an intermittent catheter at first?

That’s correct, yeah. Basically I ended up getting referred to see a urologist at a local hospital and he suggested, along with the urology nurse, that I might want to look at doing this. And then I was shown what to do by the nurse. And that proved the best thing I ever did for numerous years, quite a few years. And it made my life much easier to survive with and it worked very, very well for a long time.

And was the problem mainly at night time then?

Originally it was night time, but it did progress to become a problem during the day as well.

So, if somebody is in this situation now or about to be in this, you know come up to this situation, and they’re wondering what does self-catheterisation involve? What is it like to have an intermittent catheter? A lot of people won’t know anything.

Yeah. I mean initially it’s a very alien concept and you’d go into it not having a clue what to do. There’s no information out there about it. it’s a very taboo subject. it’s not spoken about by anybody, unless you look in the right locations. Once you find the right places, it’s easy.

it’s a very simple thing to do. Especially for, as a male it was very easy for a man to do it, much more so than I know it is for a female to do. it’s because where it goes is very obvious, and I’ve got enough sensation internally so I know that when you’re passing a catheter you have to pass the prostate in a male anatomy and you feel it doing that. So you know you’re in the right place right away.

And then, as soon as it goes in, it starts passing the urine, so it’s very easy to do. And the catheters that they have now to do intermittent catheterisation are so much better than they were ten years ago. They’ve improved a lot more.

And on a day to day basis, what does it involve, the self-care?

Well I’ve got, as I say, I’ve got a suprapubic catheter.

Now, but at that time what did you have?

At the time, when I was intermittent catheterising, I would use my catheter about four or maybe five times a day. I’d just do it. I would use my watch saying I’d get to this time here; I should do my intermittent bladder now. I didn’t have too much sensation in my bladder, saying it’s getting fuller or it’s not, cos I wasn’t getting the signals through due to the MS. So I looked at my watch and think, Okay I have to go to the bathroom now

So I went away and emptied my bladder, then it would be fine for another full three or four hours. I had to go back and do it once more.

And how long did that take?

It took about five minutes. No longer than it would take to go to the bathroom normally.

So it doesn’t interrupt

I used to go to the toilet a lot. At night, I used to go a lot. In and out of bed. And I didn’t used to do much, did I? And I went to see a urologist then at the hospital, and he checked it like a steel rod. Like a rod like what they used. And I said at the end of it all, when he came to see me after, it was day surgery. He just came back to me and said it was something I’d have to live with. And so it carried on and carried on for quite a while too. I finished up going to the hospital again through my own doctor. Cos he, the consultant, it were then, and he told me that I’d got an enlarged prostate. But, because of the warfarin, he couldn’t operate.

Then it got a bit worse after that and I went back and they gave me a catheter to self-catheterise myself, so I had to do that. And the first time I did it at home, it worked well didn’t it? The first time I tried it at home it worked well. The second time I bled, so I rung them up at the hospital and told them what had happened. And they said, Well, you’re probably alright Mr Robinson, you know something new But it was never alright. Every time I did it, I went back into hospital.

About 11 years ago, David went to see an urologist, recommended because he had to do intermittent catheterisation and to follow up on this. But he didn’t.

I suppose he was scared. He needed to be educated on the reasons why. David read engineering at Cambridge and he said, as an engineer, I don’t understand why, if my bladder is emptying, there’s a problem And he didn’t have the explanations as to why a catheter intermittently would help.

Meanwhile his PSA was rocketing and they discovered that he had prostate cancer. And he was treated, radiotherapy, I think I mentioned that before. And it overshadowed this gut that David had that was obviously holding 6 litres of urine. So, if he had been advised or had listened maybe, maybe a busy 50, 60 man who wasn’t going to listen. So I don’t blame the doctors but I do think stringent education would have been more helpful to him.

I can’t really remember the exact process of events but I did, during my time there, have a suprapubic catheter put in. And that wasn’t, I don’t think that was very long after I came out of the intensive care unit into the Spinal Unit. And I think it was because it was obviously going to be a more or less permanent feature, although they did try to get me into the habit of doing intermittent catheterisation, self-catheterisation. But I couldn’t do it at all.

I mean I thought, it was actually quite revealing with a real lack of insight into the future life of somebody with quite a high level of paraplegia. Because I couldn’t tilt my pelvis so I couldn’t possibly have catheterised myself sitting in a wheelchair. So it would have meant that, every time I needed to empty my bladder, I would have had to have gone to somewhere where I could transfer onto a flat surface. It was completely impractical.

They [medical staff] encouraged me to try, I think because the gold standard is to do intermittent self-catheterisation, where you empty your own, you put a catheter in every couple of hours and you empty your own bladder, I was encouraged to try this.

Unfortunately, my lack of function is such that getting onto a bed, getting my legs onto a bed, getting my trousers down and being able to diamond shape my legs and, and do everything with a mirror, it was just physically beyond me. I couldn’t really do it and it exhausted me.

We persevered for a little while with help. The nurses help but, after a while, they said, Look, you’re not going to be able to manage this independently. it’s probably better that we start thinking about other alternatives

I was disappointed. I really wanted, because I knew it was the gold standard and I was so determined to try and make it work. But I realised how marginal it was and I realised I couldn’t do it without help.

I came home, at that stage I came home, I was coming home from hospital at weekends and that weekend I had to ask friends to come up every couple of hours to help me get on the bed and empty it. And I just realised that it

And also you had to wake in the night and empty it, and it was too disruptive. It was not my, you know, my husband couldn’t cope with it. And it wasn’t fair on anybody. So I reluctantly faced the inevitable and I moved to a suprapubic.