Q
How did you feel about having to catheterise?A
When I learnt that I was going to have to self-catheterise I was shocked and scared. I felt anxious, as if this was something serious and potentially life-changing. When I received my appointment for selfcatheterisation training, I was dreading it, but knew that there was no way out. This had been mentioned to me in my 20s, but now it was a real thing.Q
What were you shown and taught in relation to your condition?A
On the day of my catheter training, I met the continence nurse and she asked me to sit on the bed. There was a mirror placed in front of me, a light, and a plastic, kidneyshaped dish. She asked me to point out where the urethral opening was, which I guessed correctly and then I inserted the catheter and urine flowed into the plastic dish. I felt really elated at this achievement, as I could see this manual emptying of the bladder happening right in front of me. This gave me confidence that I had done it properly. When we finished, the continence nurse gave me a leaflet and asked me to come back in a couple of weeks.Q
What helped you decide on your catheter?A
I myself didn’t choose the actual catheter, the continence nurse showed me which product I would use. I had no prior knowledge, so I obviously went along with the recommendation from someone medically trained. I didn’t question what she offered me. After some time, however, I think that patients should be given the option to try out different products. But, at that time, I was just given the one type and size and I went along with that.Q
How easy did you find the catheter to use?A
When you do something so repeatedly, every day and every night, you can become complacent and take more risks with hygiene and even become less gentle with yourself. I have injured myself internally just from thinking about something else when catheterising. You have to stick to the same regimen every single time and be disciplined within that.Q
What were the downsides and upsides of using the catheter?A
The catheter that I use has practicality issues. The packaging is quite long and made of flimsy plastic and because there is a catheter and saline solution inside of it, the packaging could potentially be pierced and the solution leak out. Also, it is quite large in surface area, so when I go out and want to take 20 catheters with me, that takes up quite a lot of room in my bag. The upsides of the catheter that I am using is that it is well protected inside the packaging and also has a sticker on the back, which is handy as you can stick it on the wall inside a toilet if there is nowhere else to put it. I don’t have to use the actual catheter until the very last minute, so I know that it is protected in the saline solution and not exposed prematurely to germs.Q
What follow-up and support did you receive?A
After my initial training in 2011 on how to self-catheterise, there was not much follow-up. Any appointments were instigated by myself; for instance, I asked my GP if I could go and talk to a urological consultant to ask them about sacral nerve stimulation surgery. I also asked my GP if I could go and talk to a continence nurse about different catheters, as I had a whole list of questions that I wanted to ask. In fact, I was the one who instigated any future follow-up appointments and I don’t think anybody actually contacted me to see if I wanted any more guidance.I also don’t feel that I have received any psychological support, other than what I have gone to find myself. But, this is important, because it is extremely stressful at the beginning and even afterwards — it’s a new life and people need ongoing support to give them the reassurance and confidence that they are performing the technique correctly.
Q
Which learning aides did you have access to?A
When I left my initial training appointment on how to selfcatheterise, I was given a leaflet which I did flick through. But, I was more concerned about the actual medical procedure and not getting a bladder infection. This was what overwhelmed me, and I forgot about all the help that is out there on the internet, in publications or newsletters . To be encouraged and reminded would have been helpful, as when you start this journey you are concerned about doing it right and not getting ill because urinary tract infections can be painful and have an impact on your life and wellbeing.After some years of self-catheterising, I started to read patient stories and realised that maybe I could write my own. I looked at animated videos and read articles and became more interested in seeking out information, but this was only after I was more settled into life using single-use catheters.
Success!