Having an in-dwelling catheter, a suprapubic, it’s not something that you shout from the roof tops. It does have inevitably a mental consequence on sexual relationships because you’ve got this pipe sticking out of you unexpectedly. And a bag of urine on the end of it, which is not the most romantic aspect of oneself.

Once people get used to it, that’s fine. But it, particularly for a younger person, it could have a very substantial effect on whether they felt confident enough to approach the opposite sex in that manner.

Yes. And is there information, again, that health professionals could give about this, or is it more how you feel within yourself?

I was most interested to find that, when I was working on a panel of medical people putting together a questionnaire to do with long-term catheterisation, nobody had considered the aspect of sex. And that it might inhibit that, and the input on that came entirely from myself. And that was in a variety of I think about 8 different aspects of the medical field, not one of them had considered that side. And it doesn’t appear on any paperwork that one sees. Why they think because you’ve had a suprapubic catheter put in, or that any other form of catheter, that that means sex is now out of the window, I don’t know. It doesn’t have to be, but no information.

Is there any message you could give to somebody? You mentioned it could be particularly harder for younger people? But for younger and older people alike, anything, because they might not find this information anywhere else?

At the end of the day it’s something that you have got to overcome as an individual. But it could be helped if you are given some guidance in the form of even something as basic as you may feel inhibited with sexual relationships because you’ve got a catheter. There is no need to feel this way. It doesn’t affect your abilities and it’s clinically and physically quite separate from any inter-person contact.

Discuss it, explain it, and in the majority of cases I think one would find an acceptance. And that the more secretive it’s all kept, like most things, the more the mystery grows and therefore it becomes a taboo.

Certainly in my case, and I think it most likely would be true for many others, if it’s through an accident or something of that sort anyway, you go from knowing nothing whatsoever about catheters, to suddenly having one implanted. And the amount of information that you are given is grossly inadequate. I can only remember the most rudimentary things being passed onto me. And it was rather, You don’t need to worry about that, the nurses will do all that you need And, unless you take a personal interest and ask a lot of questions, you don’t get told. You’re just done t rather than become a part and a controlling interest in what is being done to you.

I believe it’s something like 37 years since the Foley Catheter was invented. The first thing is I think that every patient should be shown before the catheter is inserted in them what actually happens. Because you’re told there’s a balloon. You’re not told whether this is a balloon on the end of a sort of string that floats around inside your bladder like a party balloon or what. it’s not explained that it’s like a lifebelt, tightly round the catheter itself and how it’s inflated. All of these things, because it’s inside you and you don’t see it, I daresay most people haven’t seen a catheter with the balloon blown up. I think you ought to be shown so that you know how it stays in, why it stays in. How much of the tip of the catheter is there, if you pull on it, what you’re pulling against, and similarly that the tip of the catheter, if that’s rubbing against your bladder wall consistently, the irritation that that’s going to cause. All of that I think should be explained in the early stages, when you’re first fitted with it, or in a brochure that you’re discharged with.

At the beginning, had it [leg bag] attached to a leg strap, which was beneath my knee so that one needed to go down to the bottom of my trousers to be able to open the valve. That in itself was a complete impossibility for me because of my lack of balance. If I got down there, I could never have got back up on my own.

I was never told that there were various types of leg bag emptying valves, both the T-valve section and the flip valve. I tried the flip valve. I tried the T to start with and then later on came across the flip type. I had a lot of problems with the flip because when you pulled it up your trouser leg, it would flip open and urine would come out onto your trousers or elsewhere.

I now have taken to having this leg bag emptying device and, by cutting a hole on the inside of your trouser pocket, the pipe goes out through there and hangs in a container at the side of your chair. Now, even if you were able to operate it by hand, having it higher up like that could make life a lot easier for you emptying it instead of having it go down to your shoe level.

When I was in the hospital, there was always a nurse or somebody handy to empty my leg bag. When I got home, there wasn’t always somebody there. And, because I couldn’t either reach down to my leg bag, nor could I operate the leg bag which was a sliding valve type, I would have to be left in one position with my leg bag open over a jug or a receptacle where the urine could just drain into until somebody came back. That prohibited any movement around the house, to get to the phone or anything of that sort.

That stimulated me into working with an organisation called Re-map’ who, we ultimately arrived at building and, well designing and building a prototype leg bag emptying device that was powered by my chair, a battery, and which has been an absolute God-send to me.

I would say that the freedom that has given me in everyday life is at least equivalent to what my wheelchair has given me. And its successor is now being developed by an individual up north whom I have been assisting in its development, but it’s not yet to production stage.

Once I got on top of things and my leg bag device was operating so that I could open it when I wanted, that gave me a freedom to drink more. In drinking more, I had less infections, plus the additional freedom because I was in control of what was going on. Because I found that my blood pressure goes up and down a lot, and depending on my blood pressure as to what my urinary output would be. So that some mornings I needed emptying at 10 o’clock in the morning. Another day it might not want emptying until nearer to 2 o’clock. And, if I had to rely on someone coming and emptying it, what time do I ask them to come? If they always come at the same time each day, it could be too early, too late. And it wasn’t just a case of it being uncomfortable for me because I can feel the pressure build up in both the bladder and then back pressure through to the kidney.

I was told that I must drink substantial quantities of fluid and, to that end, that cranberry juice was very good for keeping urinary infections at bay. And it was later explained to me that, the description that I found helpful was that cranberry juice puts almost like a silicon lining onto surfaces. And if one imagines that the bugs are like the hooky part of Velcro, and that one’s bladder walls and the pipes are like the fluffy bit, the hooks don’t stick in so well and the bugs get washed through.

I was drinking, at that time, about 7 pints of fluid a day, and that was one third cranberry, and then watered down three quarters of a pint to a quarter. I have subsequently taken to adding two slices of fresh lemon into this, squeezed into every pint, and that combination has reduced my urinary infections very substantially. I also tried at different stages adding different types of cider vinegar to it, but that depends on what flavours you like or don’t like. But that has a similar effect.

I then found that, because of the volume of fluid that I was taking, I was diminishing my salt levels. So I was told to cut back on my consumption to nearer to five pints of cranberry a day. I did that, but found that there was greater sediment forming in both the catheter and the leg bag pipe.

I would say that the information you are given is, to say the least, sparse. I think that if you were told recommended amounts to drink, the timing of that.

The timing of drinks?

The timing of drinking through the day and what liquids are better and why. I think that the health service could help itself quite a lot by giving people this information. And also pointing out, giving them, people the incentive to help themselves by pointing out the effects of overuse of antibiotics and the greater probability of infections if one doesn’t do this, and the discomfort that the patient will endure.

I think my advice would be, before you leave the hospital, ask as many people as possible about their experiences. While there’s several of you in there and you’re in that environment, you’ve got people who are either experiencing it or at least have got the medical expertise.

Alternatively, or well, not alternatively, but also people who re-visit hospitals for annual check-ups or whatever, if you’re in contact with them, speak to them about it too because you’re all in the same boat and, like myself, they may have developed things along the line.

At the time that I broke my neck and until very recently, there hasn’t been the 21st Century Catheter website to go on. don’t be shy about it, get on there, have a look, put in your questions because there’s a lot of catheterised people out there. Therefore there must be anecdotally a lot of stories to be told which tend to stay under covers. Bring them out and help one another.

For nearly 37 years there have been no changes to the Foley Catheter. And the alternatives to it, such as the Conveen or intermittent catheterisation, that one is a non-starter for somebody like myself whose hands don’t work.

With regards to the Conveen, I’ve yet to meet anybody who has had a long term success story with that, either because of the irritation from the glues that are used to attach them, or from the variation in size of penis during the day, trying to keep them on at whatever the state of play is. And so of all of the alternatives, the suprapubic is much the most favourable, but does create a lot of infections.

Things have improved over the 14 years. I now have partial use of both arms but with very limited feeling and no use of my hands. No feeling or muscle function from the armpit’s down. I was told by the hospital I required an indwelling suprapubic catheter, which meant nothing to me. It was the least of my concerns at the time, and so they just went ahead and did so. I don’t remember, but I assume prior to that, I must have had intermittent indwelling catheters through my penis, but I have no recollection of that period.

At the beginning the catheter, as you say, was not a major issue. My lack of mobility, strength, and just being able to move around and in a wheelchair was paramount. And I don’t really remember, apart from the infections, very much about the catheter because I had no feeling from it, other than the infections which internally made me very sore and very uncomfortable, and made me feel very out of sorts.

I then found that, because of the volume of fluid that I was taking, I was diminishing my salt levels. So I was told to cut back on my consumption to nearer to five pints of cranberry a day. I did that, but found that there was greater sediment forming in both the catheter and the leg bag pipe. So I decided to use a pipe cleaner to clean my catheter on a weekly basis, when I changed the leg bag, which I do once a week.

My thinking on this was from my background being a builder. It seemed strange that you’ve got a fairly large bore pipe of the leg bag and the smallest one, namely the catheter, you didn’t rod. You rodded the larger pipe, but the blockage is likely to occur in the small one. So, if everything is passing through the catheter to get to the leg bag, why do I need to change the leg bag and not the catheter?

So I got the longest pipe cleaners I could, but they were about shorter than the catheter itself. I would sterilise them in an antiseptic solution and just insert them, or get my carer to insert them down the pipe and throw them away. And this would immediately give you a clear pipe instead of it being opaque.

I have just very recently managed to find a pipe cleaner manufacturer who will do them to whatever length I require. And so I have now, I do the shorter one first to remove the residue from the majority of the pipe. And there was an anxiety that if I got a full length one, it could push a pellet of sediment into my bladder. In order to check whether that was happening and whether I was forming any stones, I was given a cystoscopy on a couple of occasions and it was found this was not happening. And the pipe cleaner seems to have very effectively taken away, not just push down the line.

But I would say, from my own circumstances, I’ve gone with my various activities from being re-catheterised three or four weekly to now going the full twelve weeks, which has increased incrementally. It went from three or four to six, to eight then up to twelve. At twelve weeks, that is the extent of the warranty of the catheter. But I have done a trial whilst in hospital and took it up to seventeen weeks without any problem whatsoever, which I would definitely not be able to do without cleaning the catheter out on a weekly basis.

With the pipe cleaner because, by the end of a week, both the inside wall of the catheter and the leg bag have gone cloudy at best, or near to opaque, depending on the amount you’re drinking and what your state of health is. And if that keeps building up, obviously it’s only a matter of time before you get a blockage.

I broke my neck in 1997. Prior to that, I had been a very active, fit individual, running my own business. Life changed totally and, having been very independent, I suddenly became totally dependent, spending a day under a year in a spinal unit. During that, my injury was a spinal injury, C5-C6. Namely, I broke my neck.

How did you break your neck?

I had a fall on a river bank and just landed wrong. I lost the use of my hands, was paralysed on my right hand side, had little use of my left arm. I had been right handed. And no feeling from the armpits down.

Things have improved over the 14 years. I now have partial use of both arms but with very limited feeling and no use of my hands, no feeling or muscle function from the armpit’s down.

I was told by the hospital I required an indwelling suprapubic catheter, which meant nothing to me. It was the least of my concerns at the time, and so they just went ahead and did so. I don’t remember, but I assume prior to that, I must have had intermittent indwelling catheters through my penis, but I have no recollection of that period. I was fitted with a size 14 channel catheter and I remained with that for most of the time.