Comfort, confidence and choice:
a patient perspective on ISC

 

Here, we talk to Kiera McGarrity, an intermittent catheter user and patient advocate for Convatec, about what impact catheter choice can have on comfort and wellbeing, and why it is vital that individuals are fully informed about the options available to them.

Although people should be supported to make an informed choice about their catheter product, in reality, the options discussed can be influenced by factors such as clinician time and the products available. As Kiera explains from her own perspective and experience, having the opportunity to understand, try and review different options can make a real difference to comfort, confidence and quality of life. For her, catheter choice has been an important part of being able to manage her condition in a way that works for her body and day-to-day life.

Q. What does intermittent self-catheterisation (ISC) actually mean for someone’s comfort and wellbeing?

A.There are two areas that stand out to me: the physical comfort of using the catheter and the impact that it has on everyday life. Physically and practically, ISC allows me to empty my bladder without straining, but finding the right catheter for your body is vital. Size, design, and lubricant can all make a difference to how comfortable and easy it is to use. It is very much about finding out what works for you, as it becomes part of your life.

Previously, I was constantly worrying about where the nearest toilet was and planning my day around access to one. That was incredibly stressful. Finding the right catheter has given me much more confidence in my body and has taken away much of that anxiety. I can now travel and attend work sessions without constantly worrying that I will need to rush off to find a toilet. I can also take part in different types of exercise and feel more relaxed about everyday activities.

I still have symptoms, but finding a catheter that works well for me has made a significant difference to my overall comfort and wellbeing. It has given me a level of freedom and independence that I did not have before.

Q. When talking about catheter choice, the focus is often on clinical outcomes – should it be more about comfort and impact on a person’s wellbeing?

 

A.Definitely, as catheterisation affects every part of my life and is something that I’m never going to get rid of. I think that comfort and wellbeing need to be central to any conversation around catheter choice. Clinical outcomes are, of course, important, but they are only part of the picture. If a catheter is uncomfortable, difficult to use or doesn’t fit easily into someone’s routine, that can impact their confidence, independence and quality of life.

For me, finding the right catheter has meant being able to get on with my life without constantly thinking about my bladder and where the next toilet is. Catheter choice should be about more than whether a product works clinically, it should also be about whether it works for an individual person and allows them to feel comfortable and in control of their everyday life.

Q. How much influence does the clinician have over the catheter a person uses – how can clinicians make sure that they are presenting catheter choice as a genuine choice rather than simply offering the product with which they are most familiar?

A.Clinicians have 100% influence, particularly when someone is new to catheterisation and knows very little about what is available. When I first started using catheters, I assumed that they worked in much the same way as medicine – you are prescribed a product and you use it because that's what you’ve been given. I had no idea that there were different options or that I could ask questions, try different products and have a say and be involved in what I used.

That is why clinicians have a role in making sure that catheter choice is presented as a genuine choice. If someone is only offered one or maybe two alternatives, they're choice is restricted because they may not have been given enough information about what else is available or may suit them better. For genuine, informed choice, there’s an element of trial and error by using different products, so that ultimately you choose the one that is the best fit for you.

I was really lucky when I started using catheters during the Covid pandemic. The nurse sent me a pack containing six different catheters, which meant that I could try them all and compare them for myself. I'm so grateful to that nurse because it helped me understand my own body and what worked for me. Some of the catheters I tried were not suitable – they were painful, and felt as though they were pulling or sticky, and some caused irritation. But I would not have known that if I had only been given one product. Having the chance to try different options enabled me to make an informed decision based on my own experience.

While clinicians have the clinical knowledge, the person using the catheter knows how it feels and fits into their life, so both perspectives need to be part of the decision.

Q. What do you feel are the most important factors to consider when choosing an intermittent catheter, and how can clinicians ensure that the choice is guided by both available evidence and the individual needs and preferences of the person?

A.For me, the most important factor is comfort. The nurse who I had was really helpful because she gave me a piece of advice that I still remember today – pick the catheter based on how it feels, not how it looks. I'm so glad she told me that because I probably would have chosen the pink one simply because of the way it looked, but it wasn’t comfortable for me.

Some catheters look amazing, but that doesn’t necessarily mean they are the right ones for you. This surprised me and was quite misleading.

If clinicians understand the evidence, they can help patients make more informed choices. For a new user, it can be quite daunting understanding why one catheter might be different from another. Clinicians don’t need to go into lots of technical detail, but explaining key factors such as catheter size, shape, design and lubrication and how these can affect comfort and ease of use, can help patients make an informed choice. And, of course, the evidence can help clinicians to describe the different products and what they are designed to do. In effect, it’s about bringing these two things together, the underpinning clinical evidence and what works for the individual.

Q. What are the risks of simply accepting the first catheter offered and how can patients be encouraged to revisit their catheter choice if it isn’t meeting their needs?

A. This might well have been something I would have done if I hadn’t been given different options. Even with that choice, I still changed catheters after two years. It is all too easy to tolerate pain and discomfort because you assume this is what happens when you use a catheter. I just thought that, of course, it’s going to hurt because you’re putting something into your body.

When someone explained to me that I could change products, it was mind-blowing. Initially I wasn’t sure whether I trusted the idea. It had taken me so long getting used to the first catheter that I wasn’t sure that I wanted to go through all that again. But when I tried a different one, instantly I felt nothing. There was no pain, no pulling and no irritation; it didn't bother me.

That might not sound like much, but it was a huge moment. I have now been using my current catheter for three years without discomfort, but I would never have known that there was another option if I hadn’t been encouraged to try something different.

Patients should be told that they can change products. If something isn’t working, they should feel able to raise it with their clinician and look at other options. It is also important to let them know that pain isn’t normal when catheterising and does not need to be accepted. People living with chronic conditions become resilient. But they need to know that they can speak up, ask questions and reconsider their catheter choice. Had I not done that, I would never have known how much more comfortable catheterisation could be.

Q. If someone has been using the same catheter for years, what questions should they be asking themselves, and their clinician, about whether it is the right choice for them?/h2>

A.There should be opportunities to review how people are getting on with their catheter, because symptoms can change. I think just asking, ‘are you in any pain or discomfort?’ can help to open up conversations, or exploring specific symptoms, such as whether the catheter feels sticky, or if there is any pooling when using it. I think it is incumbent on healthcare professionals to ask these questions rather than assuming that because someone has been using the same catheter for years, it must be working for them. Patients need to be given the chance to flag things up and to know that they can revisit their choice. I understand why people might be reluctant to change. I was scared of making things worse. Even though my catheter wasn’t 100% comfortable, I had spent so long learning how to use it that I didn’t want to go through that again. When you are a new user there is so much to deal with, learning about the catheter, worrying about UTIs and dealing with problems along the way, that you don't want to change after you've started.

That is why choice needs to be talked about more. People need to know that using a particular catheter for a long time doesn’t mean they have to continue with it if it is no longer meeting their needs. You can’t after all make a different choice if you don’t know that choice exists.