Community Catheter Care is Failing Patients

As I type, the country is casting their vote in the General Election. And while some might think I’m mad for writing this on that day, I see it being a classic case of striking while the iron’s hot. There is never a right time when advocating for yourself and countless other patients up and down the country.

Dearest readers will know that, I’m currently living with an indwelling catheter having gone into urinary retention. I naively thought after 10 days of having a drainage bag attached to my ankle that my bladder would naturally kick into working but that backfired. I simply couldn’t expel 2 litres from my bladder. So, since then it has stunned me the failings that catheter patients like myself are tolerating. Readers might see this article as a lobbying post or even me showing political bias, but the reality is, it needs saying regardless of the new government gunning for Number 10.

Here is the letter I wrote-> Writing to the MP to read the letter I issued to the MP and Secretary of Health and Social Care Wes Streeting.

What’s a catheter?

I stupidly thought a catheter was a cannula so I was shocked when the A&E on-call urologist asked me to take my knickers off and spread my legs without asking me for a drink first. So, to cut to the chase, a catheter is a flexible tube inserted to remove urine. The tube is inserted with large amounts of numbing jelly via the urethra into the bladder. Two catheters I’ve had fitted were less painful than the two smears I’ve had. A catheter is held in place by a balloon that’s inflated with sterile water. When long-term catheterisation is required, patients are encouraged to learn to self-catheter because it reduces infection risks and allows the patient to live a relatively normal life. Or as normal as a dysfunctional bladder can be. I failed self-catheter lessons twice and I hate failing anything. I beat myself up about it numerous times but was reassured by my nurse that it’s a skill that not all of us can pick up and that’s OK. On average, men find self-catheterising a much easier act than women. 88% success rate for men, while women come in at 76%. Are you surprised? No, I wasn’t, men are looking at their water pipe every day, us girls don’t have a mirror in the pan pointing to that tiny hole. For other patients, they might be offered Suprapubic catherisation which is a minor surgical procedure that inserts that tube via a tiny incision in your tummy button.

A recent poll revealed that there are 90,000 people in the country living with a catheter similar to mine. For most patients, indwelling catheters are inserted as the first port to expel as much urine as possible. I’ve had some engaging conversations with nurses, and they all share the same frustration, catheters are infection magnets. Catheters are a foreign body, your water pipe is a one way so it’s not used to having two way traffic, this means that catheter patients are prone to contracting infections. Approximately 5% are at risk of developing bacteriuria. 7% of catheterised patients will acquire bacteriuria every day despite best practice. Regular valve changes in sterile conditions are key but even the most cleanest of patients will be dealt their fair share of infections. Medically, these are known as Catheter Associated Urinary Tract Infections (CAUTIs) and on average, account for 17.2% of catheter complications. Since my first catheter was fitted I’ve had three infections, and most recently became resistant to the long-term antibiotics I was prescribed to prevent more developing. Unfortunately, antibiotic resistance is just as common with up to 58,224 people in the same boat according to last years UK Health Security Agency conference. (UKHSA)

Living with a catheter

When self-catheterisation became a no go, I was advised that I could be referred into my local community nursing team. As the days past, I hadn’t had any paperwork or contact from that team so I re-approached the GP. I have made no secret, that this health complaint has been badly managed by my GP practice and the urology team have agreed. Several markers were identified that should’ve instigated a much earlier urology referral. I don’t want to blame the GP because they get enough stick without having to take ownership of my dysfunctional bladder. In fact, the GP is one part of a process and there were administrators, practice nurses and healthcare assistants who made mistakes. One was that, the urine sample that was submitted the week my bladder shut down had traces of an infection. The infection was not flagged so I only found out recently when I gained access to my NHS app. Word of advice reader, get your NHS number and take back control of your health.

When I chased the community care, I was left stunned when the GP surgery said ‘we have made a referral to our district nursing unit but they have rejected your referral. You’re 28 and they do not offer community catheter care to you or anyone under 65’. I also asked why, with even more amazement she said, ‘Community care only support over 65s who are house or bed bound, if we make another referral and you answer the doorbell or out you’ll be blacklisted for life.’

Discrimination in healthcare

I don’t want to use the word that GB News label as woke but I’m experiencing discrimination from a system that prides itself on inclusivity. I was stunned, and I believe the discrimination is the bottle neck in me receiving adequate support. Statistics and conversations with health professionals point to the fact, men and/or over 65s are living with a catheter like mine meaning they instantly gain access to community care that I’m being denied. And like we said earlier, men also find self-catheterising a much easier skill to acquire leaving them no longer dependent on community care. I have, had to accept that an indwelling catheter leaves me higher at risk to infections. Accepting is one thing, but tolerating it, is harder. Every change in my urethra has resulted in a hospital admission; those admissions have come with 12 hours sat in a waiting room, unnecessary cannulas and fainting episodes. Yet, it’s something I am tolerating. CAUTIs present differently to a standard UTI, for me the biggest difference has been the foul smelling urine which has been the best marker for me that I have an infection. While without a catheter, my symptoms were lower back pain and a frequent urge to pee. Oh the joys. That being said, the out of hours care I receive is like banging your head against a wall ‘are you sure you’ve got an infection?’

Catheter Care needs reforming

In the last week, I have plotted my health as a timeline to identify trends and patterns in my condition. In my case, we’ve seen that my catheters become infected at the 4 week point, a change in catheter often comes with the best relief. Numbing jelly hits differently, it’s dreamy to not have any discomfort bending down or over. God, that sounds crude. In the UK, patients living with my type of catheter will be entitled to a catheter change every 12 weeks, but in the States, catheters should be changed every 4 weeks. It begs the question, why are we not adopting the same procedure? The average cost to the NHS of catheter management amounts to £1191 a year. Community care is costed at £200 per appointment. Ok, catheter folk are expensive. But, surely the frequent antibiotic prescriptions, admissions and car parking adds a whole new layer of cost to the NHS? The reality is, catheter care is built on a lot of outdated beliefs, similar to the management of ME/Fibro/Functional Neurological Disorder. Urologists see a patient like me, urgently react through requesting the appropriate tests but hit a dead end when community care are needed to support the patient.

Community Health Services differ between trust and location, but they play a pivotal role in supporting patients with complex health conditions. Whether that’s palliative care or even child birth. Catheter care falls under this provision but my age prevents me having access to the team. Abrupt big heads would say, but what do you want Ev? I want, answers to my questions; can I swim? Can I prevent infection? What happens if I develop an infection on weekends where I can’t access my urologist? What can I do to manage bladder spasms? Is constipation a complication with a catheter? Will I be left with a catheter for the rest of my life? Are there alternatives? Is it normal to experience UTI symptoms without an infection? I also want someone to check my catheter when I’m experiencing irritation to confirm if its thrush or urethral. I know, I’m down with the urological programme. I also want some mental support, I am privileged to work with a private therapist who has supported me through this process, but like with anything I need a health professional to see the impact the catheter and it’s complications have on a person’s quality of life. I want someone in the NHS to hear me and give me a road map. How long am I to wait? Am I eligible for Sacral Nerve Modulation? At the moment, it’s a very lonely experience battling a system that’s overcrowded with white middle class men and their prostates. I say that, because it’s important to emphasise the fact that urologists and catheter teams do not see many women my age with the symptoms.

Since April, I have been admitted to A&E 5 TIMES. Four of those admissions could’ve been avoided had I had access to appropriate catheter care. 43% of catheter patients will need to access out of hours care, with 15% accessing A&E for catheter complications. For me, constipation and infections have been the bulk of mine. While, other patients could experience blockages, urethral erosion and inflammation. In May 2023, Sunak’s Government announced the Pharmacy First which was designed to free up GP appointments for patients who needed them. Pharmacists could then supply medicines for UTIs and other common conditions. Rishi’s plan didn’t have a consideration for folk living with items like catheters and stoma bags. Why am I not surprised? Sadly, catheters add a layer of complexity leaving patients like me being admitted to A&E taking up room for someone who might be having a heart attack or stroke. It’s not sustainable for the health system or patients.

I recently spoke to a nurse who shared similar frustrations, when we went through my case notes she said if you’ve had access to community nursing you could’ve been prescribed stronger laxatives to have prevented the need of two enemas. She also told me that my area was notably poor in community care but that didn’t make it right for me or countless other patients experiencing similar problems.

Improving Catheter Care

The current state of Catheter Community Care is unacceptable and calls for immediate reform. I don’t work in policy or healthcare, but a patient advocate is yours truly. So, policy experience aside, here are some thoughts that need to be considered for the new government that’ll take over from tomorrow. Improved Communication Channels, we must establish a clear link between patient care giver and a health professional both in and out of office hours. For the majority of us, our complications seem to strike when you’re watching Saturday Kitchen. Let’s not forget the 43% we mentioned earlier. All catheter patients present differently, so personalised care plans are imperative. I’ve noticed that the second my urethra said ‘heck no’ to self-catheterisation I was left to ride solo like Jason Derulo. GP practice swiped left leaving me banging my head against a wall. These are two very different proposals but could make a huge difference for those accessing a very white man environment not fit for the rise in women developing fowlers or similar diseases.

Demand Dignity: Reform Catheter Care Now

Jesus, Mary and the wee Donkey you’ve got this far, well done. Thank you for coming to my ted talk. As you hear through this, I’m frustrated and emotionally scarred from the last three months. More must be done, and it doesn’t have to cost more money we need to improve community care to ensure patients of all ages, race and gender access appropriate catheter support. If you’ve got to the end of this article, well done but please leave me a comment or hit share on your Social Media/WhatsApp. It’s time for change folks and I need your help to ensure the right eyes read this.

Leave a Comment

Your email address will not be published. Required fields are marked *

  • My Darling Beautiful Ev, SO Brilliantly written and such informative content!!! I think you are Amazing. This needs to be sorted out and fast, it really is so unfair and wrong. I hope the people who read this (let’s hope it’s a lot of people) will agree how unbelievably hideous this all is for you and it should not be!!!!! Whatever age you are you still need and deserve the help and treatment!!! Let’s all get behind you and make this right.