Almost all the people we talked to had wanted information after having a catheter fitted, though how much varied. Most had known nothing or very little about catheters before their own experience. At one time or another they had wanted to know more about:
How catheters work and stay in place
How to keep the area around the catheter clean
Which catheters and bags might suit them best
Different types of catheter valves
How to fix the catheter bag to the leg or to the stand
How often to change the catheter
How to prevent or get rid of an infection
What drinks were best
How to unblock a catheter
How to prevent leaking
How to manage pain caused by bladder spasms
How often to have a check-up with a urologist and an ultrasound scan
Having a sexual relationship with a catheter in place
People varied widely in how much they wanted to know and when. Several said that they hadn’t been told much, particularly at the time of their accident or when they had first needed the catheter. Stuart, for example, who broke his neck in 1997, aged 47, had lacked information. He was given a suprapubic catheter and spent almost a year in hospital.
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 to” 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.
Sometimes I think you get the information too soon. It’s because, certainly again in terms of my injury which is a very long term thing, and it takes you a while to realise just quite how grave it is.
You get given a whole bundle of notes and information and it’s as if it relates to somebody else, not you. You don’t really take it in. I sometimes think that maybe it could come a little bit later in the process or maybe it could be repeated later in the process.
I also think there isn’t nearly enough information given about the downside and the possibility of infection. I mean in all the literature I read on, I was given and I read on catheters, drainage, urine drainage, there is absolutely no, nobody’s telling me “Yes but you’ll probably get infections all the time.”
It’s not something that is, obviously the health service don’t want to talk about it. But it’s, I think people cop out a bit. I think there is an awful lot of turning a blind eye to it. Especially when you hear about the amount of resources that are devoted to treating knock on infection rates from bladders. So there’s a lack of forthrightness I think on the part of the information put out about different kinds of catheters, success-rates.
Stuart had to pick up information ‘ad hoc’ after he left hospital. He said, for example, that no one told him that catheters come in different sizes and that various types of valves exist for leg bags. Stuart also said that no one mentioned sex. Several other people said they’d also had to ask lots of questions to get information when first fitted with a catheter but information was not volunteered.
Do you want to talk a little bit more about looking after it?
Yes. I found that people don’t always explain to you what you need to do. So I found that, whereas for some time I’d wash the bags out so that they didn’t smell or leave any trace of urine, that actually you’re not supposed to do that because of the risk of infection. And I didn’t realise as well that, when you put the night bag on, you’re not supposed to take the day bag off. You’re just supposed to attach the night bag. And it was only last year that someone actually explained that to me. And that wasn’t in the hospital. I did find that the actual support side on catheters was quite limited.
And as well, not everybody explains that you can bath and shower exactly the same when you’ve got a catheter in. And in fact I’ve found having a bath to be such a relief because it’s the only time you don’t necessarily feel the pull of that bag or the tube in there. Having a bath, you know, the bag just floats on the top and it’s quite comfortable.
There seemed to be a serious lack of information. And this is when I was given information regarding you [Healthtalkonline], and I felt that it was important that other people hear about my experiences of it. Because I feel the whole way through, from the start of my MS, the various pills and potions which I was given throughout the last twenty-five years, and also when the catheter went in, there was very little giving of information.
For instance, the only information I was given when I was given the catheter was, “Drink lots.” That’s all. “Keep it clean.” But other than that there was nothing. You know, what I would expect, whether it would ever come out, who would be monitoring me.
For instance, one thing I was told by my consultant this year was that you should have a regular scan of your bladder and your kidneys and all the rest of it to check there is no backflow. But no one told me I needed that and no one has come back to me from the hospital to say, “That’s what we need to do.”
So I feel that it’s important that other people know this is what they need to do because no one else seems to be responsible for giving you that information.
What sort of information were you given at that time?
I was hardly given any information at all. When I got discharged I came home and the first thing we did as a family was start looking on the internet for things. And that’s really how at that time I found out about lots of different things because the nurses on the ward had literally said, “Here you go. Here’s a box of catheters to go home with, this is what you have to do.” And that’s it. They never said, “Oh there’s all these different ones, try them.” I was never given a selection; I was literally given one set that the hospital had, a box. So I did have more delivered a week later, and really that was it at that stage. So it really wasn’t the best way of handling it really.
Some people said that they had been given conflicting information. John Y, for example, said that he’d got conflicting information about whether or not it was a good idea to drink cranberry juice to prevent infections. Jack was originally told that his catheter should be changed every 12 weeks, but recently a nurse told him that it needed changing every four weeks. Roger also mentioned getting conflicting information.
Have you had any questions that you’ve wanted to ask them [health professionals]?
Well I ask them every time how long the catheter is supposed to last, see I was told originally it would have to be changed every twelve weeks and it never lasts for twelve weeks.
And the nurse, whichever nurse comes, says that they don’t last for twelve weeks. But I don’t know now how long it does last for. And the lady connected with the nurses is keeping a check on it. And she mentioned four weeks, which, is four weeks fair enough? I just don’t know. So I’ll have to discuss this with her.
Would you be happier with having, keeping the catheter permanently if it was changed every twelve weeks?
Yes. If it lasted for twelve weeks, that would be fine.
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.
Others had much better experiences. Gavin, for example, got information from health professionals and others in a similar situation, and said the advice had been ‘pretty consistent’. Alex said that she’d been given good information from her continence advisor and from her consultant. Ian had got excellent information in the hospital’s spinal unit and later from district nurses.
There was a lot of information given in the Spinal Unit. You would be taken into a room with others, told about different aspects of your care. So you’d be told about catheters. You’d be told about pressure sores, told about food and drink. And so yes, at the beginning, yes there was quite a lot of information, which was good.
When people struggled to get enough information from some of the professionals involved in their care, they either approached others with a similar condition and asked their advice, or they searched the internet for what they needed. However, Iain warned that the internet gives bad information as well as good. Other people went back to the specialist units where they had stayed as an inpatient for long periods. A few also looked at leaflets provided by the hospital, or looked at relevant books. Some people also sought advice from family members, carers, charitable organisations or their pharmacist.
Absolutely nothing. No, no. So you end up just, I mean my GP, I’ve known her twenty years now and she knows that if I need something I’ll shout. And she will very often by guided by me, which is good. And obviously the district nurses and the local continence service are a lot more clued up around catheters than the GP I think.
Have you had any advice from the local continence service? Have you had any contact with them?
No, I don’t really. Because I’ll invariably go back to my spinal unit and I find that because, if I’ve got any problems, it’s usually to do with the spinal cord injury side of having a catheter, I find it best to go back to my spinal unit to get any advice that I need.
I suppose because I’ve been fortunate with the spinal unit, most of the information I’ve had has come from there. But I’m also a member of the Spinal Injuries Association, which is a charity for people with spinal cord injury. And on the information side, they’re sort of second to none for being able to provide information on all aspects of daily living and certainly things around developments with catheter care, and also leg bags, night bags, all of the things that go with having a catheter. I find it very easy to get information from the charity itself.
Is that on the internet or do they send you leaflets?
Well if you’re a member you get a magazine every six weeks, and there’s hardly an issue goes by without somebody writing in about something to do with catheter care. Or there are articles in the magazine or there’s advertising from the big companies around developments in catheters and catheter care.
But also yes, the website is really good for information as well and there’s a telephone advice line that you can phone up as well. So I mean if I’m honest, it would either be my spinal unit or it would be back to the charity if I needed information on catheters or catheter care. I wouldn’t ask locally.
Truly speaking doctors and nurses also tell you about catheters and catheter care, but the thing is, it depends from person to person. Most of the time you are in shock or doctors do tell you so many things, but you don’t remember. And that’s why when, if you have a UTI [urinary tract infection], people might have told you lots of things. But if you go on the internet, immediately you will get four, five suggestions for it. And after looking at those suggestions, you discover that oh I remember the doctor or the nurse or my friend has told me about it. And you just go with that, like out of five choices you will go with the choice which has matched with whatever they have told, someone has told you in the past.
One of the best websites I found was probably one from the charity, we used to call them InContact, it’s now I think the Bladder and Bowel Foundation. Their website was very informative. Even looking back years ago you had, I’m trying to think of the name of the website, I honestly can’t remember. There’s quite a few websites. Google’s got some good information, but some very bad information as well. You have to be very wary of what you’re looking at. And really ask the question, ‘is that a veritable site’. You know, there’s a lot of good information there, there’s a lot of not good information too. It’s just the joys of the internet I suppose. You also have to watch and think, ask questions on what the site you’re looking at is.
The hospital doesn’t always give you the most up to date information on maybe what collection bags are available for you. And the one website I find very beneficial, it’s a company, it’s run by Coloplast, it’s one called Charter Healthcare. They do urological supplies, you know dispensing. All you do is to get a prescription from your GP and they send you the catheter bags at your house for free, and they’re fantastic. They do not just advertise their own makes but every other make of bags out there, and they’ve also got a very small selection of what they get in the hospital, whereas in the community, and there’s such a better selection out there now than there was maybe even say ten years ago.
What’s the website address?
Charterhealthcare.co.uk I think,
I’ll have a look.
But if you Google Charter Healthcare, you’ll find them straightaway. As I say, it’s run by Coloplast, they run it. But they’re on their own and they sell every urological bag there is out there. They do a lot of stoma stuff as well I believe, they do everything, delivered to your house and it’s very discreet.
I get this stuff sent to my work, for example, and I’m not worried about being seen by having that there, because there’s nothing of their name on it at all apart from the distribution address. It’s just a very small name on there, a distribution label. And only you know what it is, because it’s very non-descript, and Charter Health could be anything.
The internet is my friend. I read a lot of research papers. I don’t go to forums and things like that. I’m very distrusting of people’s personal views in the forum situation because quite often they’re quite angry and upset and quite negative. And usually it’s their own cathartic experience that they’ve performed or following through so you don’t necessarily get a balanced view.
I’m lucky because I can read research papers and roughly understand. Wikipedia is very good if you don’t understand the chemical makeup of something, it explains it quite well.
You lived with the pain for three years did you?
Yeah, and the doctors knew I’d got this enlarged prostate, but they didn’t do anything at all about it. And one day, I have a computer, and one day I went on the computer and I put in ‘prostate’ actually. And I read all about it and they said that, with an enlarged prostate, you can get a herb which reduces it. Well this is only about a year ago. And I got some and, in no time at all, that worked and it reduced it. And the catheter goes in and out with no bother at all.
So this was a herb?
Yes. I can recommend that to anybody. And that other one there, that’s a very good one. It has some of the saw palmetto in, but I don’t think I’ve, it wasn’t something that was for me anyway.
You found out about this on the internet did you?
I did yes, yeah.
Nobody else mentioned it?
No, and nobody seemed interested in it. But with doctors, herbs don’t come into it as far as they’re concerned. They’re not interested. But they work, they definitely work. I can’t begin to tell you how well they work.
Several women with Fowler’s Syndrome had found most of their information through a group on Facebook.
Where do you find most information, apart from your doctors? Do you ever search the Internet for information?
No. The most information we get is from each other on the Facebook group.
Yes, that is where you do find information. Because the doctors and nurses don’t, they don’t understand what it’s like because they’ve never had that problem. If they’d ever had our problem, they wouldn’t treat us the way they do. Basically they wouldn’t leave us in the amount of pain that we’re left in, and they wouldn’t leave us with catheters that are so uncomfortable and things. But because no one actually knows what it feels like themselves, they can’t give us the advice.
So we have to take advice from each other and learn from each other’s experiences, from people that actually have the issues, because that’s how we learn. Like I think, like we can say to each other, “Oh, try this catheter because this one’s slightly less painful” or, “Try this new antispasmodic drug because it’s worked for me” or, “Don’t eat this” or, “Don’t drink that” or things like that. Because the only people that can give you advice really that’s good advice are people that are going through what you’re going through. How can you give advice really when you don’t know what it’s like yourself?
So, yes, I do feel that every, most doctors that I’ve seen, they say, “To be honest, I’ve never heard of what’s wrong with you [Fowler’s Syndrome].” They look it up on the Internet. There’s never been a doctor that hasn’t said to me, “I’m really sorry but I’ve just had to Google what’s wrong with you.” I’ve never met someone that hasn’t had to Google what’s wrong with me. And there you go. So that’s how much they know about it. So they’re reading a little page on Google about Fowler’s Syndrome and then they’re trying to treat you.
Some people don’t like using the internet or prefer leaving decisions about their medical care to their doctors. Ann had not searched for information about catheters on the internet and had, on the whole, had enough information. She would have liked to have been told that the drainage bag can slip out of the stand by the bed at night. This happened one day and she woke in a flood of urine. Apart from that, she was satisfied with how much information she had been given. Indeed, she said that too much information at first might have overwhelmed her. Later, her daughter-in-law, a nurse, advised her to use a sleeve to hold her leg bag in place.
At that stage and throughout the years, were you given all the information that you would have liked? Was there much about the catheter?
Well they gave me this ghastly pack when I left hospital, which I’ve never read because it was so depressing I couldn’t read it. And the nurse who, each of us was designated one nurse to look after us as a special, I mean each nurse would have several patients, but you as a patient had one nurse to go to. And I had the most wonderful nurse who was actually the nurse practitioner on the unit. And she had a particular interest in urinary issues and bladder function and so on. And she was really the most marvellous girl and I could have asked her absolutely anything and nothing would have been out of her range. So that was very good. But I still felt really that a lot of the decisions were left up to me.
I do actually even now feel slightly, I do feel slightly I’m in uncharted waters. Because with a lot of the care I’ve had, it’s been initiated by me which, you know, I don’t know that I’m really qualified to be taking such a responsibility. I fall into the generation, I don’t want to be consulted about the decision. My choice is who to go and see, and after that I’d rather hand them all the responsibility for what to do with my particular medical care. I don’t want to be involved because I don’t have the experience. And I’m not, I mean I’m quite adept at using the internet, but I’m not somebody who will go and look up bladder dysfunction on the internet to find out how to manage my [condition], I just don’t do that. I would rather go and see a specialist who’s been looking after people with my kind of problems for several decades and go along with whatever he or she suggests. I don’t understand why the general public don’t follow that line.
More information about indwelling catheters can be found in the Bladder & Bowel Foundation booklet.