Peter Y

Age at interview: 65

Brief Outline: In 1969, Peter had a car accident and broke his neck. He became paralysed and lost use of his limbs and torso (tetraplegia). After using a condom catheter for over 30 years, he was fitted with a urethral catheter. Peter lives with a full-time carer.

Background: Peter manages the 21st Century Catheter Project website and is single. Ethnic background/nationality: White British.

More about me...

In 1969, Peter had a car accident and broke his neck. He became paralysed and lost use of his limbs and torso. This is called tetraplegia.

 

From 1969 to 2002, Peter used a condom catheter. This is a urinary incontinence device for men, which consists of a flexible sheath that fits over the penis just like a condom. The condom part is then attached to a tube that drains the urine into a drainage bag. The condom catheter is easy to use as it is simply rolled onto the penis. It is then attached to the penis using one of several methods. Sometimes this external catheter is secured using double-sided adhesive. Another way of securing the condom catheter to the penis is with a jockey-type strap or a foam strap.

 

The first ten years, Peter said he was free of infection but, at a very stressful time in his life, he got a urinary tract infection (UTI). Another stressful time later in his business life led to him passing ‘filthy looking’ urine only at night. Peter visited his GP but it took nine months for him to be referred to a consultant. He felt very groggy much of this time.

 

At the first appointment, around 2003, the doctor told Peter that he would be fitted with a urethral catheter. No other options were mentioned or discussed. The catheter worked well for about three years. Peter said he also had very good private care during this time, including a full-time live-in carer with fifteen years experience. His catheter was changed every twelve weeks and he was free of infection. When he changed to Primary Care Trust supervised agency care, however, Peter said, ‘There was no continuity of care. The standard is very low in terms of hygiene and, within six weeks, I started to get blockages. The first time it happened, I had no idea what had happened. I just knew I needed a nurse very quickly because it hurt, you know headaches and so on. It just got worse and worse and worse. So then I was having catheters changed every week, every two days.’ Peter said he had nine months of ‘bad care’ and, on one occasion, ended up with a 12-hour blockage. During this time, he often had infections. A carer visited him at home three times a day.  

 

Although the process took about nine months, approval to have a live-in carer through the NHS was finally granted and Peter’s catheter care started to improve. Peter’s carers came from an agency in which the carers were trained in spinal injuries. He said that self-managing his catheter was very important and he found that acidic drinks, such as water and fresh lemon juice, particularly helped. Peter empties his bag three times a day and changes it once a week. Fortnightly, he has citric acid bladder washouts. Since around 2009, Peter has had his catheter changed every twelve weeks by a district nurse. He said that, despite any problems with his catheter, ‘the catheter did save my life’.

 

Peter now manages a website called 21st Century Catheter Project, which aims to help improve the design of the Foley catheter. The Foley catheter was invented in the 1930s and its design has not been improved since then. Peter feels that a new catheter should be designed, one which would allow the bladder to empty and fill in a normal way and interfere with the natural working of the bladder as little as possible. The 21st Century Catheter Project aims to publicise the issue and the impact on health care costs, as well as highlight the health benefits and cost savings of a newly designed catheter. The Project hopes ‘to bring together a team to provide users with a system that gives them personal control over their bladder, enabling the bladder to fill and empty regularly and, in that way, reduce the complications.’

Peter Y had no infections in the first 10 years he used a condom catheter. After a stressful time...

From 1969 till about 2002, I used a condom. In fact two or three different kinds in that time, and connected to a leg bag. And I remember going for the first ten years with no infection. 

 

I had a period of stress at that time and got an infection. And I also had some difficulties with some relatives who had chicken pox who came very close to me. And, although I’d had chicken pox as a child, the side effects I got from that went straight into my kidneys in that I blew up like a balloon and my water balance was completely shot. Those were minor issues afterwards in that I did recover quite well and was still using a condom in 2002/3. And so I got a long time using that system. 

 

Then I had, this is a recurring theme, I had another quite big period of stress in my business life because I have, although I’m in a wheelchair, I have worked all my life more or less, not immediately after the accident but very quickly afterwards. As a result, I found I wasn’t passing water during the day. I was passing water at night, fairly filthy looking stuff, but I wasn’t passing it during the day which was yeah, is bizarre. 

 

So I went to my GP and it actually took nine months to refer this to a consultant at the local hospital, which was too long. And I was feeling pretty groggy by the time the urethral catheter went in.

 

Peter Y saw his GP because he was passing no urine during the day. When he eventually saw a...

I had, this is a recurring theme, I had another quite big period of stress in my business life because I have, although I’m in a wheelchair, I have worked all my life more or less, not immediately after the accident but very quickly afterwards. And, as a result, I found I wasn’t passing water during the day. I was passing water at night, fairly filthy looking stuff, but I wasn’t passing it during the day which was yeah, is bizarre. 

 

So I went to my GP and it actually took nine months to refer this to a consultant at the local hospital, which was too long and I was feeling pretty groggy by the time the catheter went in. The approach I take with all general hospitals is that get in and get out as soon as you can, for all sorts of reasons.

 

The first consultation with the first consultant I met at the interview, before I went into hospital, although I went in within two or three days, was that I’d got one option. There was no choice. It was simply a urethral catheter. I was unhappy about that really and wondered if, you know, what’s the problem? Why can’t I have something else after all the choices there were. I haven’t done my Googling and so I wasn’t aware of various choices. Which I wish I had.

 

Peter felt at first that the urethral catheter was a permanent intrusion. He disliked the idea of...

So you had a urethral catheter for how many years?

 

It’ll be eight now.

 

Eight now. Yes. And right at the beginning what were your main concerns right at the beginning about it? And how have they changed over time, now that it’s been eight years….

 

I think the first reaction I had was that it was a permanent intrusion into my body. And that is a psychological step. Rather like when I had to have a tooth out at the front of my mouth for the first time ‘cos I’d broken half of it off on a cricket pitch. And eventually it had to come out and so effectively I had a small false tooth for the first time. And I felt very sort of awkward about that, you know these foreign bodies in your own body. I’d rather have gone around with no tooth as it were, but apparently that was aesthetically not a good idea. 

 

But having said that, I did feel that with the catheter, I mean I did, I broke my tooth at fifteen or some such age. And I did recall that time when the catheter was being, you know I knew it was going to have to done. And I thought, well you know I’ve got two choices' if I don’t have it I’m not going to be on this earth very long, so you know get used to it chum. And I did. 

 

But, as I’ve said two or three times, I would prefer it not to be there. I think that feeling is doubly so when the damn thing isn’t working as well. Well I’m making it work as well as it can but, you know, a lot better could be done.

 

Before having a urethral catheter, Peter Y was showing signs of anaemia, feeling lethargic and...

It’s fair to say it [urethral catheter] did save my life because I was, I now know that I was going to die if I’d continued in the vein I was in because, one, I was showing signs of anaemia, which is a side effect I think of the back pressure on the kidneys. And I’d taken the odd iron tablet for that. 

 

I’d also, I know from the blood tests that were done then, and then fortunately over the next year the blood went back to normal. But there are chemicals in the blood which are not taken out when the kidneys are under back pressure, and they were building up and building up. And so I did notice I was more lethargic, found it difficult to think before I got the catheter. 

 

And so when the catheter goes in, there’s this enormous pleasure, “Well things are back to normal.” You can actually think straight, and you’ve got energy again.

 

Peter Y started getting blockages when his care changed. He had to have his catheter changed...

Everything went fine probably for two and a half or three years. I had very good care. I changed catheters every twelve weeks, on the day and there was never any consideration of doing different. I was obviously free from infection of any kind for two and a half to three years, and that was a period of good care.

 

Then I had to change my care system. I simply couldn’t afford to pay for my own care all the time. Which I’ve not, because I had been given supplemented, a little bit for four or five years, but I’d been paying the full amount basically. And as my business had stopped, I couldn’t afford to do it anymore.

 

I then went onto local authority care, so there was no continuity of care. The standard is very low in terms of hygiene and, within six weeks, I started to get blockages. The first time it happened I had no idea what had happened. I just knew I needed a nurse very quickly ‘cos it hurt, you know, headaches and so on.

 

Then I went, just got worse and worse and worse. So then I was having catheters changed every week, every two days. And it got so that the situation became untenable. I did have acetic acid bladder washes, a series of six for six weeks, and that did work. And that demonstrates that perhaps what the nature of the infection was I think.

 

This period of care ended in November of that year which was about eight months, nine months, and that basically nearly killed me. I ended up with a twelve-hour blockage of the catheter. And because I was unattended overnight, all I can say about that is I don’t recommend it to anybody. And secondly, apparently it’s not enough to kill you but my God it feels like it. And I think such events do leave you a bit mentally scarred, you know I had to fight pretty hard to get rid of the nervousness it might cause. 

 

The next day I started, through the National Health Service continuing care, to have a full time live-in carer. And that’s why it lasted nine months because it took so long to get approved and so on. Immediately we were able to think sensibly about the situation and the situation improved. It did take eighteen months, and now we’re in about 2009/2010, 2009 actually. It took, generally speaking, bearing in mind a twelve hour blockage causes problems for kidneys, bladder, everything in that area. And it took about 18 months to get back to some sort of normality. 

 

Peter Y talks about the importance of hygiene and drinking lots of fluids to help prevent urinary...

The best advice I think I could say is to manage the situation yourself. Try to understand what’s happening and to be not concerned about it. Place an emphasis on hygiene; place an emphasis on monitoring your urine. Just, especially in the beginning, make sure it’s working alright. 

 

But you’ll soon become quite confident of it I think, in that if it is working well. If you get an infection, get it treated quickly. You might be able to get another start as it were, but acidic drinks are a good idea especially if you do get an infection. Get some acidic drinks into you. As I say, I drink six pints a day which might be a lot for some people, but that’s what I do. And do that at the same time as the antibiotics again as well. If, you know, and they can argue who cured you, the antibiotic or your acidic drink, but make life as difficult as possible for the bacteria that have entered the bladder.

 

So that’s the main advice I’d give is general hygiene, and prevention is much better than a cure. And I think for some bladder infections cure is extremely difficult. 

 

Peter Y helped set up the 21st Century Catheter Project which aims to improve the design of the...

The 21st Century Catheter Project started a year ago now, which is the middle of 2010. But we got up and running and got a full website up at the beginning of this year. And we really, the focus is to improve the design of the catheter, of the Foley catheter, to improve that design. 

 

But we knew if we put the website up, we would get a lot of people saying, “Help me with what I’ve got.” And so there’s a forum there. There’s all the science of problems with catheters, in terms of proteus mirabilis infection, how it occurs. There’s some graphic pictures which, unless you’re a, if you’re a member of the general public we should probably put an x-rating on it. 

 

But, apart from that, it’s a website to help current users. And it’s also a website trying to promote a new design and actually to get people to accept that professionals in the industry and in the medical profession, to accept how limited the existing catheter is. It’s rather, it’s one of those things which, if brought forward now as a new invention, would simply not be approved in its current state. And the only reason it’s being used, it seems to me, is because no one can be bothered to get anything better. And I think part of the problem, the other thing we wanted to raise was, or to demonstrate, was that existing users are not happy with what they’ve got, but there’s no alternative.

 

What would the ideal new catheter do?

 

An ideal solution would interfere with the bladder as little as possible, in other words we’d want to retain its elasticity, so that it empties and fills in the normal way. But the bladder must empty completely or so completely that there’s, again the normal level of residue left. And so of course the magic one would interfere very little with the body. But I appreciate there’s got to be some mechanism of dealing with the problem. I mean I’m assuming that the problem is that the sphincter is not working properly and there are other reasons for catheterisation. But the problem with this catheter is that it damages the lining, the wall lining of the bladder and so that an infection can get into what is effectively an open wound. That has been videoed and shown to be true.

 

And also it’s impossible for the bladder to empty properly with a circular balloon as a retention mechanism. To get rid of the tip of the catheter and alter the shape of the balloon or use a retaining mechanism which doesn’t keep the bladder full of 100ml or so of urine, would help a lot. But that’s easy for me to say.

 

When Peter Y had more infections than usual because of poor care and bad hygiene his catheter got...

Everything went fine probably for two and a half or three years. I had very good care. I changed catheters every twelve weeks, on the day, and there was never any consideration of doing different. I was obviously free from infection of any kind for two and a half to three years, and that was a period of good care.

 

Then I had to change my care system. I simply couldn’t afford to pay for my own care all the time. Which I’ve not, because I had been given supplemented, a little bit for four or five years, but I’d been paying the full amount basically. And as my business had stopped, I couldn’t afford to do it anymore.

 

I then went onto local authority care, so there was no continuity of care. The standard is very low in terms of hygiene and, within six weeks, I started to get blockages. The first time it happened I had no idea what had happened. I just knew I needed a nurse very quickly because it hurt, you know headaches and so on.

 

Then I went, just got worse and worse and worse. So then I was having catheters changed every week, every two days. And it got so that the situation became untenable. I did have acetic acid bladder washes, a series of six for six weeks, and that did work. And that demonstrates that perhaps what the nature of the infection was I think.

 

When Peter Y could no longer pay for his own care he had to accept care provided by the local...

Everything went fine probably for two and a half or three years. I had very good care. I changed catheters every twelve weeks, on the day, and there was never any consideration of doing different. I was obviously free from infection of any kind for two and a half to three years, and that was a period of good care.

 

Then I had to change my care system. I simply couldn’t afford to pay for my own care all the time. Which I’ve not, because I had been given supplemented, a little bit for four or five years, but I’d been paying the full amount basically. And as my business had stopped, I couldn’t afford to do it anymore. 

 

I then went onto local authority care, so there was no continuity of care. The standard is very low in terms of hygiene and, within six weeks, I started to get blockages. The first time it happened I had no idea what had happened. I just knew I needed a nurse very quickly ‘cos it hurt, you know, headaches and so on.

 

Then it just got worse and worse and worse. So then I was having catheters changed every week, every two days. And it got so that the situation became untenable. I did have acetic acid bladder washes, a series of six for six weeks, and that did work. And that demonstrates that perhaps what the nature of the infection was I think.

 

This period of care ended in November of that year, which was about eight months, nine months, and that basically nearly killed me. I ended up with a twelve-hour blockage of the catheter. And because I was unattended overnight, all I can say about that is I don’t recommend it to anybody. And secondly, apparently it’s not enough to kill you but my God it feels like it. And I think such events do leave you a bit mentally scarred, you know I had to fight pretty hard to get rid of the nervousness it might cause. 

 

The next day I started, through the National Health Service, Continuing Care, to have a full time live-in carer. And that’s why it lasted nine months because it took so long to get approved and so on. Immediately we were able to think sensibly about the situation and the situation improved. It did take eighteen months, and now we’re in about 2009/2010, 2009 actually. It took, generally speaking, bearing in mind a twelve hour blockage causes problems for kidneys, bladder, everything in that area. And it took about 18 months to get back to some sort of normality. 

 

Peter Y has a urethral catheter. He goes out regularly and meets his friends. They feel a bit...

I have no difficulty with a catheter and the leg bag. I have no problems emptying it. But because of my physical state generally, I’m rarely without someone with me. And so I’m totally facilitated if you like all the time. So that I don’t have, I mean I do have problems with it kinking occasionally. But as soon as there’s any sign, we put it straight and it’s not a problem, you know there’s no serious problem like that. So I do go out regularly and, in inverted commas, have a good time. And my friends that are with me are often having to go to the loo more often that I do, and feeling rather jealous about it. 

Peter Y describes the 21st Century Catheter Project, which started in 2009.

The 21st Century Catheter Project started a year ago now, which is the middle of 2010, it was probably the middle of 2009. But we got up and running and got a full website up at the beginning of this year [2011]. 

 

The focus is to improve the design of the catheter, of the Foley catheter, to improve that design. But we knew if we put the website up, we would get a lot of people saying, “Help me with what I’ve got,” and so there’s a forum there. There’s all the science of problems with catheters, in terms of Proteus mirabilis infection, how it occurs. There’s some graphic pictures which, unless you’re a [catheter user], if you’re a member of the general public we should probably put an x-rating on it. 

 

But, apart from that, it’s a website to help current users. And it’s also a website trying to promote a new design and actually to get people to accept that professionals in the industry and in the medical profession, to accept how limited the existing catheter is. It’s one of those things which, if brought forward now as a new invention, would simply not be approved in its current state. And the only reason it’s being used it seems to be, is because no one can be bothered to get anything better. And I think part of the problem, the other thing we wanted to raise was, or to demonstrate was that existing users are not happy with what they’ve got, but there’s no alternative.