If you’ve been following the intervals between my stories, you’ll know we’ve hit that time again—yes, the reason for the two-week absence.
July was anything but easy. In fact, it was the hardest month I’ve ever experienced, even tougher than a breakup or losing a job. I not only faced challenges in my freelance work but also underwent
Urodynamics testing, which was every bit as awful as the Google searches had led me to believe. If you want the full details of that medical ordeal,
click here. I also ended up in A&E again, this time due to a poorly fitted indwelling catheter from Mr. Urodynamics, which ruptured and caused bleeding in my urinary tract. That night, I had four different catheters inserted, four rounds of numbing jelly, four saline water administrations, and heard “Don’t worry, we’ve seen it all before” four times. In one month, I went through five catheter fittings—calling my urinary tract “tender” would be the understatement of the year.
Shortly after, I met with my Consultant Urologist, having previously been under the care of a Registrar Urologist. This consultation restored my faith; not only was I validated and reassured, but the Consultant acknowledged, “Catheterising women is traumatic. Yes, we prefer patients to self-catheterise because it reduces infections and improves quality of life, but the fact is, many women find this skill difficult due to pain and swelling.” He then moved on to discuss the next steps. He advised me that my test results and symptoms point towards
Fowler’s Syndrome, a condition I was unaware of until Influencer
ElleNextDoor shared her diagnosis and experience in a video. Ironically, the night I was admitted to A&E, Elle’s video popped up on my TikTok feed. The Consultant admitted that neither he nor his colleagues had the expertise to treat me and made a referral to UCLH, a leader in female urology specialising in Sacral Nerve Modulation—a pacemaker that helps the bladder and urethral sphincter function properly. However, I’ve seen mixed reviews from women on social media regarding their treatment experiences with this condition.
I know the referral and appointment won’t come through in the next week, and I’m managing my expectations, accepting that any surgical interventions might not happen until next year. So, what’s next? Essentially, I’m managing my catheter care until further notice. However, this management has been a major source of frustration. Only in the past two weeks have I won the battle to receive access to Community Catheter Care. Thankfully, I’m not house- or bed-bound, which means I’m not entitled to home visits unless I need urgent assistance. But I’ve been allowed to visit the local catheter care facility, which means I don’t have to go to A&E for every catheter change. Recently, I had an infection that was immediately treated in the community, avoiding an A&E admission for antibiotics. A study published by the
British Journal of Community Nursing revealed that 48% of catheter patients are admitted to A&E with an infection. Progress has been made, but it’s taken a lot of formal complaints, coordination with my newly elected MP, and a paper trail between urology and my GP.
Enhanced Community Care
The more I talk about catheter care, the more I realise this is a national issue, not just a regional one. Many patients aren’t receiving the support they need, leaving A&E as their only option, which burdens both the patient and A&E departments across the country. Initially, my GP practice refused to refer me to the Community division because I was under 65 and “shouldn’t need a catheter” at my age. The sad reality is that
community catheter management is typically for men over 70 or those in care homes. I don’t fit into either category. As I’ve previously shared, community catheter management is far cheaper for the NHS than admitting patients to A&E—I believe the cost difference is around 10%. It would be naive to think I was denied care because they didn’t like me; it’s not that, or at least as far as I know. Community services are overwhelmed, with many patients unable to receive care even if they need it.
Community care will vary from patient to patient, but for catheter care, it’s straightforward: catheter changes at local facilities, access to antibiotics/infection prevention as needed, and support. I’ve noticed that few people know what to say to me because it’s such a difficult condition to live with. In fact, one of the nurses who has been helping me since my complaint said, “As hard as this situation is, remember your catheter might feel life-changing, but it’s also life-saving,” which helped me develop a more positive relationship with the silicone tube between my legs. But that conversation was the best support I’ve received in the four months this has been going on. Access to community care shouldn’t be determined by a patient’s age or living arrangements but by their medical history.
Training and Education
While feeling like I was going in circles, I spoke to a school acquaintance who is a Practice Nurse—the nurse you see at the GP. Unlike my Practice Nurse, my acquaintance was helpful in explaining that catheter care isn’t typically covered in GP nursing because most catheter patients are referred to the bladder and bowel community service. I know, someone get me on the NHS commissioning board. This conversation made me realise that even our beloved medical professionals have limited access to training and education on catheters and their maintenance. Catheter care feels a bit like ME management, in that expertise varies greatly depending on location. The sad fact is that all but one of my A&E admissions this year could’ve been prevented with adequate support in primary care. For example, it still bothers me that Pharmacists are often unable to assist with
Catheter Urinary Tract Infections, even though they’ve been more helpful than the GP in many cases.
Education shouldn’t be limited to the healthcare space—this is where patient advocacy plays a huge role in catheter care. Most of my family didn’t know that someone could live with a catheter long-term. My disabled Nanna, for example, was discharged from the hospital with a catheter for six months, but she was bed-bound. She also remains the only person I know who has had a catheter fitted and not experience any form of infection or complication. The resources available are lacking, and few NHS trusts publish up-to-date materials to support the patient and their caregivers. When self-catheterising became impossible, my catheter nurse fitted a flip valve, making the need for a leg bag redundant—a far more dignified option. No one should have to walk around with a urine bag that looks like an ankle bracelet. But was this flip valve given its own PDF? No, it wasn’t. Nor was I given adequate advice on whether I should be using a night bag—only recently was it confirmed that doing so could help prevent infections.
Improving Access to Supplies and Resources
As mentioned earlier, accessing basic supplies has been like doing a bikini wax with a blindfold on—absolute carnage. After making a formal complaint, I was delighted to receive a home visit from a local catheter nurse, who brought every catheter product imaginable: night bags, female-specific catheters, and straps. Only recently have I learned that there are different types of catheters. A Catheter Nurse
explained, “If a man is fitted with a female catheter, it can be fatal due to the biological difference in the urinary tract, which is why all patients are given male catheters to prevent mistakes.” There’s probably a gender health issue here, but for now, appropriate supplies could’ve made the experience much more bearable for me and other patients living with Urinary Retention and other urological problems.
I know you’re eager to hear this—I can now conclude. Thanks for sticking with me this far. Not all heroes wear capes.
