Backstory
I love the UK’s NHS and use #ourNHS as my hashtag of choice most days.
This is a personal narrative based on recent experience.
When a catheter becomes a necessity…
In November 2016, I wrenched my back and hip pretty badly, even for me, and after being advised by GP and physios to take myself to A&E, I did so in early December. After a couple of days in A&E/CDU my problems ranged further to include a significant worsening of my already wild post-Parkinson’s-drugs urination problems which now ranged from outright retention to the zero control of a newborn. An indwelling urinary catheter was installed, removed for a “TWOC” (no, not a taking-without-consent of a motor vehicle but a trial-without-catheter!) and re-installed and I was sent home with the advice that community nurses would contact me and be there to support me in managing this new experience.
As always, I focus on the positive and think about all that I have to learn about the world of catheters which is a mystery to me at this point!
I meet the Community Nurse(s)…
Three days later I was called by the community nurses, a service provided these days in my area by a private company, and an initial home visit was arranged for the following week. The nurse who attends me on this, my first ever interaction with community nurses, tells me she has had no dealings with urinary catheters since her initial training – her expertise is in wound care. I appreciate her honesty but feel somewhat concerned that she should have been sent to a new patient with their first indwelling urinary catheter. As I have been googling for some days to try and figure out how to manage my catheter and its tubes and bags, as I am determined to come to grips with this extra nightmare, I had actually been hoping for someone to review what I was doing and advise on anything that could be done better. I realise that this very pleasant individual is in no position to be of direct help to me, and wonder why she was sent and how much this non-visit is going to cost the local NHS budget.
…a scrap of paper…
We sit down (well, I loll on my bed / centre of operations and the nurse sits on my bedside chair) as she has brought some paperwork – a couple of forms, it would seem. I establish that the only information she has been given about me on a scrap of paper is my name and address and that I have a urinary catheter. She has no knowledge of my medical history at all and starts by asking a few ridiculously basic questions. I find this all very puzzling – this is 2017 and all this information is readily available at my GP practice and with the two hospitals I attend (which are part of the same #ourNHS Trust). Clearly there is no interconnection of records or even basic data and it dawns on me that while such a situation would be unacceptable in a 21st century public health and social care system, this nurse is, of course, working for a company that is no more part of #ourNHS than my mobile phone provider!
My visitor jots down my answers on one of the forms (apparently the wrong one for a new patient but it is the only one that was available that morning), is not interested in noting any information other than that relating to the catheter (date installed, make, model number etc) which is, presumably, the “billable task”. There is no inspection or check made of the catheter itself, but as I am now the catheter expert out of the two of us, that doesn’t really bother me too much.
… I am patient # x of a list to be seen that day…
A week later, my second Community Nurse contact is by way of a phone call from someone else to check that all is ok and then, a week after that a different nurse turns up at my door, without any advance notice. At this third visit, the nurse is clearly expert, tells me that the nurses choose when they work, as many also work in #ourNHS or private hospitals, and on any day are just given a list of who they are to visit by the company providing the community nursing service in the area. There seems to be no “team” as such – I don’t press for more details as I don’t wish to appear critical, but this is very different from the team of nurses that helped my mother in her last months 15yrs ago. This nurse is impressed with my “process” (there’s a lot of handwashing and bag-maintenance and leg-strap wearing associated with catheters, believe me!) and tells me that I won’t be visited at home again. If I need help with the catheter at any time, I am told to call the general number and someone will be able to help, or if something appears to be brewing as an emergency, then I should take myself to A&E. It is an odd feeling to realise that the nurses who did come to see me will probably have no memory of even meeting me, as I was merely #x on their list of people to see that shift. There is no sense of continuity. Each visit has been like a supermarket transaction, imbued with no more compassion or care than checking out one’s groceries.
…so far so good? …
At this point, however, my priority is trying to manage the catheter, so I am pleased that my muddling-through appears to have led me to do things correctly, but I remain concerned that it really has been up to me to get to this point as best I can. There is huge discomfort and abdominal pain, heaps of bypassing and I am feeling more actively unwell than I have for a while as, in addition to everything else, my back, pelvis, hips and knees are protesting because the discs I slipped in November (which didn’t need neurosurgery) are stuck half in/half out of place and attempts at exercise just make my joints yell.
…we expect everyone with a catheter to have an infection…
Weeks pass and I begin to be concerned about a possible UTI – I really feel rotten a lot of the time and dipsticks I have bought indicate lots of things are not normal, so I call the Community Nurses and after a few days of telephone tag get to explain the situation and am told that a nurse will visit to take a sample to be sent away. A week later another new-to-me nurse arrives and proceeds to do a dipstick test. I presume this must be a precursor to taking a fresh sample from the catheter port to send away and imagine the sample kit must be very small because she’s only wearing a coat and is not carrying a bag of any kind. The dipstick shows major changes in colour along the strip, as I suspected it would, but the nurse then tells me that this is all normal, that everyone with a long term catheter has a permanent infection and there is no need for sample taking, which is convenient as she hasn’t brought a sample kit with her. Unusually for me, I refrain from commenting (my excuse is I was feeling too rotten, OK!). But I really wanted to remind her that the purpose of her visit was to take a sample, to tell her I’m perfectly capable of reading dipsticks myself and that for me to go out of my way to seek help would suggest I must be feeling pretty unwell. I say none of this, but I do mention feeling more unwell and uncomfortable than usual and that I am concerned at how bypassing is causing BP spikes and transitory chest and arm aches (worrying to me because of my chest pain/ head-pressure emergency in September 2016) and that the chest ache occasionally needs GTN spray to resolve it. I am told, efficiently and positively, that all this is completely normal and I am not to worry.
But I do.
If my chest/arm pains, discomforts, spasms and BP spikes triggered by the bladder/catheter are all “normal”, then why aren’t they findable via Google? Everything else to do with urinary catheter stuff is there… but I tell myself not to worry. In extremis, I know my utterly brilliant GP will be there for me.
…the potential to be amazing is irrelevant…
Ultimately, of course, if I become horribly unwell and then a mere statistic, the Secretary of State for Health and his Government can rejoice that their shameful underfunding and fragmenting of #ourNHS has one less chronically unwell/disabled individual to deal with. I believe I still have the potential to be amazing as an individual and perhaps even may be able to improve my physical condition with the right support and investigations, but these factors and my well-being are entirely irrelevant to this current system.
…urodynamics … outpatient clinic urine test …
In January 2017 I have urodynamic tests which reveal severe neurogenic bladder dysfunction and some structural issues but … I get a bonus catheter change by an excellent urogynae nurse. This means I have until April before I need invite the community nurses to intervene, as urinary catheters are left in situ for 12 weeks in my part of the country.
Then in March 2017 I have an out-patient clinic appointment where I am asked to provide a leg-bag sample which is dipstick tested. I am told that the stick revealed anomalies so the sample will need to be sent away for analysis. I thank the nurse who tells me this, and she is surprised when I mention I had been concerned for weeks about my own dipstick results but told to ignore them. Even now, though, the sample being sent away is the one I gave from the leg bag, not a fresh sample from the catheter port itself, but as the hospital I am attending is one of London’s top teaching hospitals, I have to assume they do know best! The specialist I saw is adding me to the waiting list for a suprapubic catheter and prescribed some meds for “system maintenance” which I hope won’t have too many side effects, as my system is prone to react atypically to prescription drugs.
…I would prefer a robot to change my catheter…
Hopefully, I can learn to change my suprapubic catheter myself in future (the first change will be done in outpatients), although right now, the thought of removing/inserting a tube in my own abdomen is pretty freaky, but the knowledge that a completely disinterested stranger under time pressure may end up doing it, without any awareness of me and my medical issues, is likely to overcome my concerns here. I think I would almost prefer a robot to such a person!
…continuity of care is history when #ourNHS is privatised and fragmented …
It is actually frightening to realise that so long as #ourNHS continues to be broken up, there will be no continuity of care, no assured level of expertise in those dealing with my catheter and every other issue going forward, no knowledge of my overall medical situation, which is complex, and neither the time nor interest in me and my comorbidities as the individual on any given visit will have no expectation of seeing me again. The same is true for everyone in a similar position.
…Chinese whispers and a sea of discontinuity…
If I find myself incapable of looking after myself completely independently, I have no doubt that I will be adrift in a sea of discontinuity. Each visit will be a brand new encounter, with assumptions being made about me, without any full knowledge of my medical history (what records are shared appear inadequate at best and otherwise, downright inaccurate). Should I get to the point where I am truly unwell and become reliant on these strangers in a fragmented privatised one-issue-one-provider system with notes fractured and spread in a fashion akin to Chinese whispers across umpteen different organisations, what will that do to my quality of care.
What is it doing now to peoples’ quality of care who are already reliant upon it.
For anyone relying on consistent medical care in the community this must be terrifying, with the burden of these inadequacies adding to those of our wonderful GPs who each represents a bastion of reliability in the whirlpool of chaotic medical agencies.
…the UK deserves the compassion and care of a single, uniform health and social care system untainted by the need to profit-take…
This, among many other reasons, is why as a lifelong-until-now left wing Tory, I have become even more outspoken about keeping #ourNHS as a truly public and not privatised service for the people of this country. While fit, healthy and busy working, I had no clue about the world of the sick, injured, chronically unwell, and disabled. It could so easily become a very dark place indeed, without the compassion and care of a single, uniform health and social care system untainted by the need to profit-take and healing for love not profit.
Post scriptum
20 March – I am called late afternoon by my GP surgery and told I need to collect a urine sample kit as the hospital advised on 17 March that the clinic sample was contaminated. I ask about how to do this correctly as I am catheterised, but get an “oh, I don’t know about that” reply. No-one seems to know anything! So… I Google for what to do!
21 March – I call Community Nurses /local healthcare company as I don’t think my tremor will let me stick a needle (even if I had one) into the catheter port and ask if someone can come and do this. I am told that someone will be with me “sometime on Thursday”.
23 March – a person arrives late-morning. She used to be a nurse and is retraining, and seems v sweet and kind, BUT it transpires that she can’t change the catheter (it has been in situ for 8 weeks now) and she also doesn’t have a syringe with a needle or a syringe of a size suitable for the port of any of the three leg-bag types I have to offer (despite the fact that the bag I have deliberately chosen for this week is one of those originally ordered for me by these very same “Community Nurses” so they would know which syringe would be needed!). The nurse-in-retraining tells me that she has been told that if no syringe works, then her “boss” has said that the sample will have to be taken from the catheter itself. I am somewhat surprised at this as the rule is usually that there should be no air/germs accessing the catheter and bag-change should be effected as rapidly as possible. My leg bag is disconnected and my catheter left to hang in the wind (well dangle into the sample pot) in the forlorn hope that some dregs can be caught. My catheter is completely empty and I explain that my neurogenic bladder no longer acts as a reservoir and will vigorously expel/by-pass as little as 50ml, so waiting for something to trickle out of the catheter may take a while. This doesn’t seem to matter and my catheter is left open to the elements for about 20mins or so. Less than 2cm is captured and a new leg bag then attached. Oh, and a dipstick test was also done to verify that the test was needed, notwithstanding the fact that the regional hospital had told my GP to order the urine test AND I have been reporting an extreme range of dipstick results since February!!!
If I didn’t have an infection before, then I probably do now!
It is all so time consuming, inefficient, unhelpful, stressful and plain wrong and wouldn’t happen if we didn’t have a fragmented/privatised health system. All this ridiculous to-ing and fro-ing is just for one urine sample to be taken correctly from one catheter.
I think I am going to suggest that the healthcare company thinks about providing a nurses room at the local medical centre, where their Community Nurse team is based, so that, perhaps one day a week, folks can make appointments for urine testing and catheter changing and other simple procedures. Quite apart from the convenience of having an appointment time (or they could operate on a drop-in basis), instead of potentially waiting at home all day, I really don’t like watching nurses put on gloves that have been stuffed in pockets that, for all I know, contain used tissues or car keys, or taken out of a medical bag that has been to who knows what pest-ridden dwellings before it gets to me!
I am so fearing my catheter change on 14 April….
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@joannekarma
#RCtheParrot
