ALLOW me to share you a true story about a friend, one with a sad beginning and a looming ending that gets sadder by the hour. In part, it also provides a perfect summary of our unfit wider NHS which ought to adopt a new slogan: ‘I’m sorry, but . . .’
It starts with an argument on a golf trip in 2021, when this fabulously successful and very early retired gent and I had a verbal fall-out over the experimental covid jabs. Luckily – unlike some – our friendship survived his zealous support for them, while I spent a couple of years getting cancelled, on and offline.
Some months later, at another golf club, I noticed him repeating himself and falling into disturbingly vacant moments. Before long he’d been diagnosed with an ultra-aggressive form of frontotemporal dementia. Of all the brain disease family, FTD is singularly the one the medical establishment hasn’t the foggiest clue about. He was basically sent home for his family to suffer and him to die.
I’d take him out while he was still mobile, and latterly ‘babysit’ him to give his devoted wife a break. For quite some time now he’s been in a specialist care home, bed-bound, non-verbal, incontinent, his ability to swallow the only thing keeping him alive, basically. And then he had a couple of seizures (possibly strokes, no one can tell). A GP wrote two prescriptions and off I went to get them filled.
The local Boots had neither and when the pharmacist checked, she saw that one medication was not just unavailable across the Boots chain, but beyond. The doc had prescribed a drug no one can get. Attaboy/girl! Neither had any of them got the other drug, midazolam. If you’re familiar with it, care homes got through years-worth of midazolam in months when they were putting to death thousands of their elderly residents during the first covid winter. It doesn’t have to be a terminal dose, I should point out.
I rang York hospital and eventually got through to the pharmacy. After about 20 minutes of their phone line – not mine – cutting out, and repeated ‘I’m sorry buts . . .’ the pharmacist managed to get my number and ring me back on another phone. Good job it wasn’t a 999 call, eh? No, the biggest hospital for 30 miles didn’t have the medication either, but they called York city centre’s 24-hour methadone dispenser, Monkbar Pharmacy, who confirmed they had the more immediately required Midazolam. Off I drove.
The pharmacist there took the scrip, told me it would be 30 minutes, and 45 minutes later I got to the front of a queue halfway down the street (only three people allowed inside at a time!) entering as a haggard-looking addict exited. My medication still hadn’t been filled, and then came back Mr ‘I’m sorry but . . .’ Their drug was a fraction stronger than the one requested by the clearly clueless GP, and he had no idea where I might get some, but if I went back and got another prescription written, he could probably get some in two or three days. He couldn’t just issue what he had, I asked, and reduce the recommended dosage? Nope. Against the rules.
‘So,’ I inquired – and this is how it went – ‘because you couldn’t be bothered checking when York Hospital called, my friend will likely die a quivering, distressed wreck?’ ‘Yes,’ he replied. ‘I’m sorry, but . . .’ I’m aware it’s unacceptable behaviour, but I did almost take the pharmacy door off its hinges as I departed in furious frustration.
Back in the care home, with his temperature touching 39C, his hands and feet shaking uncontrollably, and occasionally spasming, he was fed a spoonful of liquid paracetamol – Calpol, in effect, which we give toddlers. His carer was on the phone trying to get the emergency District Nurse/doctor out. I listened in as his case was discussed. The NHS professional didn’t sound overly concerned and casually mentioned that according to their notes he’d been receiving Midazolam throughout the day before. He’d had none. How does that even happen?
My visibly suffering friend is way beyond conveying any thought, emotion or even sign of pain. He’s dying, most likely sooner than later given his rapid deterioration in such a short time, but nobody knows. The GP kinda/sorta offered that they could try to get him into an ambulance, put him on a hospital trolley, park him in a soulless corridor for a few hours and – if he survived all of that – give him another brain scan that hasn’t told them a single helpful thing since day one.
His wife declined. He’s in a comfortable room that feels like home, cared for by attentive and sympathetic staff and while the only positive outcome is for him to pass quietly and peacefully, even that surely simple prospect is constantly thwarted. His sons were making their way across the country to be with him. She however was being made to sit at his side and suffer the most unimaginable mental agonies, bearing distressed witness to an incompetent, uncaring and unfit for purpose National Health Service.
