A Routine Hurdle

I’ve had issues with my bladder for a long time, but just over a year ago they intensified. Since then I’ve been seeing a specialist neuro-urologist (neuro-uro), and with his help things have got a lot easier – particularly at night, largely thanks to using catheters at the end of each day to make sure my bladder gets a good empty.

In addition to using the catheters, which are prescribed for me by the team at the hospital, I’ve also been wearing pull-ups during the day to help catch any leaks. But the hospital weren’t able to give me a prescription for these and told me that I had to speak to my GP and get assessed for them locally.

This morning I had an appointment with the local continence nurse. It was a much more challenging appointment than I’d expected but thankfully I wasn’t alone and Jen, my brilliant new support worker, was there to help me through. The top three hurdles were:

1) The nurse spoke to Jen several times instead of to me.
2) Half way through the appointment she told me off for swearing, even though I’d carefully explained at the start of the appointment that I have Tourettes.
3) I was asked to give a urine sample. When I explained I’d find it hard to use the usual sample tube she gave me a tiny shallow bowl instead. This would’ve been ok if the toilet had been nearby, but it wasn’t. And to make matters worse the nearest accessible toilet was out of order! That meant I was expected to carry my wee in a shallow bowl right through a busy reception area. Not surprisingly this was humiliating. Jen had to push my wheelchair with one hand and carry my bowl of wee with the other. I joked that it was like the most extreme egg-and-spoon race ever.

I’m used to sharing personal aspects of my life in order to get the support I need, and over the last few years I’ve spoken with many professionals about my bladder. But not everyone will feel this comfortable, and for someone else this appointment might well have been more than a hurdle: it could’ve been very distressing and could’ve meant that they didn’t get what they needed.

What was most striking was how little understanding the nurse seemed to have of the intimate and sensitive nature of what we were discussing – and this turned the whole process into a real ordeal for me.

For a while it seemed likely that the nurse wasn’t even going to agree to prescribe me the pull-ups I need, pressing me to try other products instead. But thankfully in the end she heard the reasons why pull-ups work best for me. My constantly wiggly body and the poor dexterity in my hands make other types of pad much less effective.

Jen and I both breathed a massive sigh of relief when we left. Hopefully my new pads will arrive in the next couple of weeks.

A few years ago being treated in this way might’ve thrown me off for the whole day. But today I felt resilient, and in the end I got what I needed.

If your job involves making personal assessments, please remember that what might feel routine to you may well be a massive moment for the person being assessed. The world’s full of hurdles for disabled people and it’s our shared responsibility to get rid of them wherever we can.

“The U-bend’s into urine”

“Turing Test or urine test?”

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