“She’s old, and she has MS, and now with the diagnosis of cancer,” he began, making no effort to stop it sounding like a list. “I know it is hard to accept …” Hard didn’t quite catch the emotion, but no matter, that wasn’t my problem right then.
I knew about my mother’s health problems. She had had minor surgery on the Friday and her consultant had been pleased, and was talking about her going home soon, with plenty of time to confront the inevitable, whether it be months or years away. But here we were, two days later, and she was deeply distressed, talking gibberish, singing what sounded like Gregorian chant, and obviously at death’s door. Why so quickly? Were these the standard symptoms of cancer? I wanted a specific medical explanation and none was forthcoming. I needed to speak to the consultant, if only to understand.
“He doesn’t work on Sundays,” the young doctor replied, and with that made ready to go. My mother clearly wasn’t precious enough to him to merit further exploration of the reasons behind her alarming decline, but she was to me. “Who deputises for him, then, when he’s not here?” I persisted. “Me,” came back the reply, aimed at closing that door for good.
I may not be an expert on hospital rotas, but had enough faith in the basic organisation of the NHS to suspect this just couldn’t be true. There had to be a consultant somewhere in the hospital, or at least on call, if only to satisfy the insurers. I simply refused to be fobbed off.
It resulted in a very awkward stand-off. My elderly father, devastated by my mother’s unexpected, unexplained but imminent demise, looked at me pleadingly as if to say: “Let it go. Why must you always make a fuss?” He came from a generation born before the NHS and had a natural deference to doctors.
But my redoubtable aunt, Rita, my mother’s favourite sister, was there too. Her protective instincts towards her sibling knew no such constraints, and she backed me up. In the end, I think the young doctor realised that, since he had no satisfactory medical explanation to my questions, the only way I was going to let him go was if he conceded something. Reassuring me that the consultant would deal with it on Monday cut no ice since he had already told me my mother would probably be dead by then.
The tipping point came when the wonderful nurse who was caring for her, silent throughout this stand-off, spoke up on my side. In all my mother’s time at that hospital, the nurses were outstanding, not just in their care, but in treating us as people who needed to be told the facts, but told them sensitively.
Finally, it was agreed that the consultant could be contacted by phone. He was, it turned out, on call. “He’s going to drop in,” the nurse told us. It was on his way home from the golf course. The best clichés contain an element of truth.
When he arrived, it took him no more than two minutes to diagnose the problem. Not old age, not cancer and not MS. Or not directly. My mother had had the progressive form of MS for 40 years. As her body slowly stopped working, she took an ever-increasing cocktail of pills to maximise what movement – and independence – she still had. To prepare for her operation on the Friday, they had stopped these drugs temporarily – but then had forgotten to restart them.
Without that consultant’s Sunday visit, she might well have been dead before the night was out, the shock of the withdrawal of her MS drugs sending her body into a tailspin. But when they gave her the pills, she was back to her old self by morning – no confusion and no chanting.
A couple of weeks later, she was discharged. She spent the last months of her life at home with her family and friends. Those months gave her a chance to tell us what we already knew, that she loved us, and to spend time playing with her first grandson. Those memories are more precious to me, and my son, than I can possibly describe now she is no longer here. And that hospital, because of its sub-standard “Sunday service” practices would have stopped us all from having that time. It still makes me furious.
So much in our world now runs on a 24/7 basis. I can go to the supermarket in the middle of the night, even on a Sunday, or call my bank, and get exactly the same service I would at 10 o’clock on weekday morning. The irony is that I could happily wait for such services, but when you’re critically ill, or going into labour, you need to be sure that there are expert staff on hand whatever time they are required, not a youngster just out of medical school.
That junior doctor – and I don’t blame him individually, but regard his behaviour as symptomatic of the attitude of too many parts of the medical establishment that had trained him – made a calculation that Sunday. He didn’t understand why my mother was dying, but he preferred to let her die rather than disturb the consultant who was being paid to be on-call.
That experience, and many more since, have convinced me that the patient doesn’t always come first, which is unforgivable, medically, ethically, and financially, because as a taxpayer I am the customer and funder of the whole system. I don’t use it a lot, but when I do, I expect it to respond properly, not fob me off with excuses about it being a Sunday.
I complained, stuck to my guns, and in the end was listened to. That may have been the moment I realised that, when dealing with the NHS, it helps to be middle-class, articulate and – it feels shameful even to add it to the list, but – white. That has certainly been my experience since, going along, for instance, with a family friend who isn’t in any of those categories, and whose deep-seated (and, it turned out, entirely correct) fears about the symptoms her nine-year-old son was displaying were dismissed as groundless by consultants at no less a place than Great Ormond Street Hospital in London.
There are dangers, I know, from extrapolating widespread problems from individual incidents, but I have heard too many similar stories to convince me these are isolated cases. After that Sunday, my Aunt Rita took me to one side. “Make me a promise,” she said, “that if I’m ever in the same fix as your mother was in there, you’ll be at my side to speak up for me.” But I shouldn’t need to be, and she shouldn’t need to worry.
'All alone in my room, I feared I would die’
Thursday afternoon, 10 days ago, I was languishing in bed feeling increasingly strange. On the previous Friday, I had been given chemotherapy to control my lung cancer. I felt odd enough to ring the chemo unit at the hospital, but when I asked about stronger painkillers the nurse at the other end didn’t think to ask about my temperature.
Two hours later it occurred to me to take it just in case. The threshold for going into hospital is 38 degrees. My thermometer said 39.7. I needed help, and fast.
Four calls to 999 failed to elicit a response so a friend took me to A&E, where they responded at a leisurely pace. Eventually, five hours later, I was on a ward at King’s College Hospital being treated for pneumonia and septicaemia.
On Friday evening, the nurse announced that I would be moved to a special room near the nursing station. As the sickest person on the ward, they needed to keep a close eye on me.
So far, so encouraging after the nightmare of getting into hospital in the first place.
Friday in hospital was a hive of activity with nurses, doctors, medical students and social workers swarming. Come 5pm, all that ceased. Alone now in my special room, I was petrified that I would die in the night because, far from monitoring me constantly as promised, the ward had gone quiet, apart from the cries of a confused old lady, hiding under the bed.
Getting attention involved pressing a buzzer and waiting a very long time. Such nurses as there were, had too much to do. They administered drugs but there was little time for anything else – and this in of the most highly rated hospitals on Dr Foster’s list.
I longed for Monday. Then, indeed, everything cranked up again. The sister in charge was duly shocked to learn that no one had offered me a wash or cleaned the room since Friday.
By then I scarcely cared because I had survived. The antibiotics had worked. Everything else was detail – but not perhaps to the older and more vulnerable patients.
Cassandra Jardine
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