Failure to get a grip on treating urinary tract infections is an affront to the dignity of elderly women

I never thought I’d ever sit down to write something as brazen as an appeal for help, advice, or mere human contact. Yet sometimes, in recent days, I’ve wondered if I’ve been suffering from delirium. I thought I believed in a world where experts know more than juniors, where logic runs the course from A to D through a series of simple proofs. Mine had always been a world in which people look at the whole picture and don’t just rely on a single small detail. It’s a world where peer-reviewed scientific literature means something…

Yet, instead, I’m sitting here, as I type this, watching a baby monitor next to my screen. On the baby monitor is the black and white image of my mother as she lies in bed in the next room. She doesn’t know I’m watching but here I am, distracted because I fear she’s about to wake, become disturbed, and then cry out my name so I can go ease the terrors of the devils that haunt her.

This is all a long way from last night when she had been cracking jokes in front of the TV and catching up on the US election coverage she’d missed during three weeks in hospital. She had even praised Jill Biden for the “work she does for children in the inner-city projects”, having read her biography a few weeks ago. Those were her exact words. Not exactly ground-breaking political analysis, I know, but my sister laughed (first time in a long time) and I just looked shocked. My mother, you see, is the one suffering from acute delirium and, after spending three weeks in the care of the NHS during Covid-19 epidemic, doctors haven’t cared to explain why. Nor, l as far as I can tell, have they really bothered to look…

Medicine doesn’t know all the answers, I’m sure some will reply. Others will answer: trust the experts (and I’d normally agree with you on that one). Or perhaps it really is “just Covid”. Yet it could also be something else, symptomatic of the NHS I was taught to love (my father was a nurse). My mother came home in an ambulance yesterday, still dressed in her hospital gown despite having a bag of clean clothes. Only her coat thrown over her saved her dignity.

For the amateur sleuths among you, let’s see if you can guess what might be wrong with my mother…

She’s now presenting acute delirium (sleepiness, confusion, hallucinations, with periods of lucidity) but on the day of her admission to hospital we’d had trouble waking her. That morning, she had been sick and feverish before urinating (but always felt better upon completion). She said it was “stinging” when she passed water but also said that she was having trouble “finishing” and would often have to go again within minutes. She’d also suffered night-time incontinence for only the second time (the first was two nights earlier) in all the period I’ve been caring for her, which is a number of years since my father died.

If you’re stuck, let me give you a clue: she’d been treated for an acute UTI – a urinary tract infection – two years earlier, which also presented itself as hallucinations.

I remember holding her hand in A&E that day and wondering why she was mistaking me for my sister. It was unreal. My geeky, hyper-logical, science-friendly brain couldn’t fathom how that could happen but that was the very first time that I’d ever heard the term “UTI”, which has since become ever present in my life. I’ve now muttered to friends so many times that “if men suffered from urinary tract infections with the intensity they’re experienced by women, there’d be hospitals in every town to ensure they’re eradicated forever”.

After that first encounter with the UTI devil, I found it remarkable speaking to friends and relatives and discovering how many others had similar stories about loved ones who were fine one day and then intensely sick the next thanks to a “brewing” UTI and treatment that was withheld because The Man From Microbiology said “No”.

UTIs are nasty little things to spot, you see, or that’s how it was explained by a consultant urologist I queried (privately). Dip-sticks (little coloured strips of paper that change colour when dipped in urine) are only accurate about 30% of the time. Even the “gold standard” (I’m sick of hearing that phrase) lab test is only right about 50% of the time. Yet many doctors (notably the kind of unimpressive GPs you find in smaller towns, as well as too many junior hospital doctors) rely on both and cite a fear of antibiotic resistance (which experts say is another myth) as a justification for ignoring the plight of many women over the age of 65.

This surely is unacceptable. Public Health England guidelines provide two flowcharts for the treatment of UTIs – one for people under the age of 65, another for people who are older. The latter chart warns against using dip-sticks (“ditch the stick” has become a motto in the UTI community). It even warns against reliance on lab tests. Look at the bigger pictures, doctors are instead told. If a patient presents with any two of six classic symptoms, treat it as a UTI.

Except that clearly doesn’t happen. My mother originally presented with three of the six symptoms and now lies in bed talking gibberish in the dark while still presenting at least one of the symptoms. As a result, I find myself doubting not just the NHS but the medical profession entirely. It’s not that I’m unwilling to accept something that might be inevitable, or I think relatives of mine should be special cases. Yet I simply can’t live with a logic where 1 + 1 =  47, or, to be precise, a consultant urologist tells me that sometimes a mood change is the “only indicator” of a UTI in an elderly woman, yet a junior doctor can decide something isn’t a UTI because of “inflammatory markers” or lab cultures.

I now doubt the fundamental beliefs I’ve held throughout my life. What is the point of science when supposedly rational creatures expound myths in the place of peer-reviewed science? What happened to the belief that we deserve dignity in our old age? Surely Public Health England’s guidelines are worth more than the Powerpoint slides they’re written on? Or it is just some awful lingering misogyny that means female health is considered less important than that for males?

Tweets James Malone-Lee, Emeritus Professor at URL and a leading authority on UTIs: “There are abundant data in peer reviewed literature which show that urine culture, dipsticks and their derivatives are too inaccurate to guide UTI treatment. There is a glut of healthcare bellwethers with fingers in their ears whilst they hum loudly. The patients pay for this.”

So, take this as a warning, you men of my age with elderly mothers. She might one day start to talk nonsense for no apparent reason (perhaps, like mine, after a hot summer when inadequate dehydration is always a danger) and you’ll naturally fear a stroke (another common misdiagnosis). It might not be that, but doctors will admit that they just don’t know why her sanity hasn’t returned. The lab tests came back negative, they’ll say, so perhaps it’s just dementia.

But enough. I see my mother waking in the monitor. Her infra-red illuminated eyes are staring empty black towards me and I feel my failures as a son so acutely. I’ve spent six weeks crying, flailing, fighting this battle to get my mother a proper diagnosis and now I only have futile gestures. Tonight, she wanted to go “dancing on the ceiling” with my late father, so I held her hands as we danced an imaginary foxtrot.

I cannot help feeling that this is yet another futile gesture. I know in my heart this is a UTI, but I’m powerless to stop it consuming my mother, who will soon shout for me and I’ll spend the next six hours trying to comfort her.