‘All I want is to lie on my bed with Jasmine like I used to and chat and hold her hand,’ said Theresa.
At the end of my first week at work, Theresa attempted her visit. I held her hand and calmed her nerves before she departed, and on her return I went to her room to find out how she had managed. Her face was unrecognisable. The drawn, grey, defeated mask had been replaced by exhausted radiance.
‘We lay on the bed together and we chatted, just like we used to,’ she said, tears brightening her eyes. ‘I didn’t think that was possible. I never believed I’d get home again.’
I smiled. How could I not? With the support of the entire team of staff at the hospice, a mother had shared at home with her daughter time she never thought she would have. The overarching frame of her cancer remained every bit as bleak and brutal, but within that we had enabled Theresa to experience more of what mattered than she knew was possible, and her joy at the realisation shone out of her.
In a parallel universe, the intensely personal care of the hospice would be everywhere in the NHS. Finite resources, of course, preclude that. Nor, in acute or emergency settings, would I wish too many of them to be diverted away from the fundamentals of addressing patients’ urgent, life-threatening needs. Nonetheless, it is perfectly clear that, as resources are squeezed ever tighter, compassion, kindness and attention to patients as individuals are being rationed as surely as the cataract surgeries, hip operations and the latest expensive cancer drugs. Staff may continue to remove themselves from brutalising conditions of work – as I did temporarily – or, with their compassion and commitment to the NHS fatally worn down, they may morph into burned-out clock-watchers. Either way, the health service is compromised, moving a step away from what it should – and still could – be.
Like the other great schisms in British politics in 2016 and 2017 – over Brexit, Nigel Farage, the price of Marmite, the shape of a Toblerone – the National Health Service is one of the great polarising forces of national life. In polls, the NHS consistently tops the list of things that make us most proud to be British, beating our history, the royal family, our system of democracy and our culture and arts. A cradle-to-grave health service, free to all in need, irrespective of their bank balance, clearly chimes with something deep within us, our sense of kinship, perhaps, with our fellow citizens – or a more basic human response to pain and suffering, a primal instinct to look after each other and be kind. Yet, though we love the NHS, we cannot escape the evidence that the health service is increasingly struggling to deliver good care.
In his final piece of writing, produced in the days before his death from inoperable lung cancer, the Times newspaper columnist A. A. Gill captured beautifully the strengths, ambitions, paradoxes and failings of our sacred, yet threadbare, NHS:
It seems unlikely, uncharacteristic, so un-‘us’ to have settled on sickness and bed rest as the votive altar and cornerstone of national politics. But there it is: every election, the National Health Service is the thermometer and the crutch of governments. The NHS represents everything we think is best about us … You can’t walk into an NHS hospital and be a racist. That condition is cured instantly … You can’t be sexist on the NHS, nor patronising, and the care and the humour, the togetherness ranged against the teetering, chronic system by both the caring and the careworn is the Blitz, ‘back against the wall’, stern and sentimental best of us — and so we tell lies about it.79
The lies, or at least exaggerations – that the NHS is uniquely brilliant, second to none, simply the best in the world – were painfully brought home to Gill when he discovered he was ineligible on the NHS for an expensive, novel cancer drug, which, though unable to cure him, might have given him more time with his loved ones. Had he lived in other European countries, the new agent nivolumab might have been available to him immediately, but in England, he explained, in order to access it without delay, he would have to pay for it himself. In the context of the NHS having such poor outcomes for cancer survival, one can only imagine Gill’s distress at being denied, as he saw it, the prospect of precious weeks’ and months’ more life on the grounds that nivolumab failed to offer the NHS sufficient value for taxpayers’ money.
In spite of this, Gill seemed to intuit precisely why so many of us cling so fiercely to the NHS – because of the story it tells us about ourselves. If we did not have the NHS to believe in, then how pinched and diminished might our collective self-image become? We want to convince ourselves we are decent, humane and generous, a society of individuals ever willing to reach out towards each other. But, if we are unwilling to pay sufficient tax for a system that ensures everyone receives the medical care they need, regardless of their ability to pay, then where does that leave us? Forced to confront the fact that we are too mean, ultimately, to fund the NHS’s future?
This is highly charged, emotive stuff. NHS detractors often dismiss these sentiments as nothing more than obfuscatory fluff. For them, the cold, hard, unpalatable truth is that the NHS is a monolithic dinosaur, a clunky, plodding relic of old that underperforms, overspends and should, by rights, have been extinct long ago were it not for the mawkishness of those who ignore the benefits of the free market’s invisible hand. As political strategist John McTernan claims, writing for the right-wing think tank the Institute of Economic Affairs,
Facts and arguments don’t matter when it comes to the NHS – only emotion and sentiment register. Commentators often talk about us living in a ‘postfact’ world. If that is so the NHS led the way – debate about its future has been conducted in post-factual terms for quite some time.80
This, of course, is a glib overstatement. It is perfectly possible to believe passionately in the political principles underpinning the NHS, while taking a cool, level-headed look at the evidence for how well and cost-effectively our health service is performing. Indeed, it would be odd for doctors, steeped as we are from university onwards in the science of practising evidence-based medicine, to exclude from our efforts a rational appraisal the overall efficacy of the NHS. Politically, I may cherish an equitable, income-taxfunded health service but, as a doctor, I want the best for my patients, so the NHS had better deliver.
Undeniably, some of the international data make grim reading. They show the NHS lagging behind other European and Western countries on many important performance indicators, with cancer being a striking example. For example, mortality data compiled by the OECD show the UK languishing in the bottom third of the thirty-five OECD countries for five-year survival for colorectal, breast and cervical cancer.81
Is this any surprise, however, given how little of our gross domestic product we choose to spend on health? At the time of writing – and despite Britain being the world’s sixth richest economy – the most recent OECD data show that in 2013 (the latest year for which full figures have been published) the UK spent only 8.5 per cent of its GDP on healthcare, placing the UK thirteenth out of the original fifteen countries of the EU.82 The EU average spend was 10.1 per cent of GDP. For health economists such as John Appleby, the chief economist of the independent health think tank the Nuffield Trust, the key question, therefore:
is increasingly not so much whether it is sustainable to spend more – after all, many countries already manage that and have done for decades. Rather, it is whether it is sustainable for our spending to remain so comparatively low, given the improvements in the quality of care and outcomes we want and expect from our health services.83
To put it another way, do we wish to cut NHS services to fit the current budget, or to provide the budget to fit the healthcare we want? Money, of course, is not the whole story. The NHS can still at times be infuriatingly lumbering. But, while there are, no doubt, ingenious ways of driving up NHS efficiency, merely shrinking the workforce and rationing the care the NHS provides is the opposite of clever. Less is not the new more. Shoestring budgets are not the route to international excellence. In health politics, just as in medicine, there is no place for false hope, disingenuousness or
wishful thinking.
Transparency, if it means anything at all within the NHS, begins with candour about the costs of a world-class health service. If we want the best, we cannot avoid paying for it. Yet politicians’ fear of conducting this debate openly with the public ensures the continued denial, for political ends, of the facts about the crumbling state of the health service the government professes to cherish.
Discovering I was unable to walk away from caring for patients stirred in me a renewed sense of optimism. It suggested there was something stubborn and tenacious keeping the NHS afloat. At work, I see this everywhere. My nursing and doctor colleagues may be harried and exhausted but, for so many of them, as for me, the rewards of caring for others still outstrip the costs. And we cling, I suppose, to the glimmer of hope that one day things will change – a political sea change towards the NHS, new investment into services in terminal decline, another doctor or nurse on the rota.
The swiftest way to snuff out that hope is to deny the existence of the problems. This, at root, is the most corrosive consequence of the government’s weakness for spin because it takes away from NHS staff our right to speak, to be heard, to be believed, to have a voice. If no one listens when you try to say that patients are imperilled, if no one believes you when you say the NHS is at breaking point, if you are smeared and undermined by the government for trying to speak out, then in the end you cannot be blamed for hanging your head in mute despair. You have successfully been silenced.
Junior doctors screamed for a year about the dangers of overstretch and understaffing – and the misery of the 2016-17 winter crisis confirmed much of what we warned about – yet the Department of Health continues to maintain its elastic approach to evidence. You might therefore conclude, as I did temporarily, that junior doctors achieved nothing – our efforts were futile – and indeed that in today’s ‘post-truth’ era I am naïve to hope for more. After all, 2016 was the year in which a Cabinet minister claimed that the British people had ‘had enough of experts’ and, across the Atlantic, a proven serial liar went on to win the US presidential election. Facts and expertise have never looked more vulnerable.
For me, the lowest point in the junior doctor dispute came when, after a year of deploying contentious mortality statistics with devastating aplomb, Jeremy Hunt used his speech at the 2016 Conservative Party autumn conference to utter the extraordinary statement, ‘I say to the BMA and all junior doctors let’s not argue about statistics.’84 In almost the same breath, he used statistics – again contentiously – to add rhetorical ballast to his seven-day NHS policy. This time, he implied that weekend care was inadequate by claiming that, ‘when we checked’, only in one in ten hospitals were patients being reviewed by a consultant within fourteen hours of being admitted. In fact, independent statisticians had shown that at least 80 per cent of patients are reviewed within that timeframe.85 It was another statistical sleight of hand.
Statistics – facts – are the bedrock of good medicine. Doctors are scientists, not quacks, and health policy should be as evidence-based as our practice. It takes a special kind of chutzpah both to misuse statistics and to tell doctors to stop arguing about statistics all in the same twenty-minute speech. What could be more ‘alt-fact’ than that? Particularly when you have just positioned yourself – again – as the champion of NHS candour, avowing, as Hunt did in the very same speech, that patients ‘want to know that in our democracy no citizen will ever be rendered voiceless or powerless by a mighty state or a mighty bureaucracy, even one as loved as the NHS’.84
Throughout the year of bitter wrangling, if ever a phrase captured how junior doctors felt, it is that we were ‘rendered voiceless or powerless’ by the government. And, as patients and their families learned the hard way from Mid Staffs, when concerns are ignored for long enough, staff in the end give up trying to raise them. Their silence does not mean things are better, but that fatalistic resignation has taken root.
Yet it does not have to be this way. Giving up is a choice. As the American author and activist Rebecca Solnit writes:
Your opponents would love you to believe that it’s hopeless, that you have no power, that there’s no reason to act, that you can’t win. Hope is a gift you don’t have to surrender, a power you don’t have to throw away. And though hope can be an act of defiance, defiance isn’t enough reason to hope. But there are good reasons.86
Perhaps the best reason for maintaining hope is that, though Hunt achieved his desired ‘win’ over junior doctors, he inadvertently gave us both a voice and the confidence to use it. There is a pleasing irony to the fact that, for all the attempts to paint junior doctors as BMA-duped ‘militants’, no single individual has done more to inspire confidence, determination and the will to speak out among junior doctors than Jeremy Hunt himself.
Nor has anyone united so successfully a previously disparate bunch of doctors into one cohesive whole, 54,000 juniors with a shared sense of identity and a newfound taste for disruptive candour. We are, after all, our patients’ advocates every day at work – now we have extended that sense of advocacy into the political sphere, pushed by the disingenuousness of the current government’s stance towards facts and evidence in the NHS.
Once so subservient, heads tucked below the parapet, my generation of doctors has learned the hard way how to speak out and be heard. We are certainly not going to stop now. Whether the government likes it or not, there will be continued transparency and the facts will out, if not from the Department of Health or the powerbrokers of the medical establishment then from the grassroots up.
‘Rach! Can you believe it? Can you believe what’s happened to Sally? It’s a miracle!’
It was 8 a.m. I’d arrived early for my Sunday morning shift in the cancer centre, hoping quietly to nurse a double-strength latte while preparing for the morning ward round. Being immediately accosted by a nurse on arrival was far from usual, but then Sally Morley was no ordinary patient.
‘What? What’s happened?’ I asked, immediately concerned. ‘Is Sally OK?’
‘OK?’ the nurse laughed. ‘I told you, it’s a miracle. Just go and see for yourself.’
Some two months earlier, my first ever week as a junior doctor in the cancer centre, Sally had been the ward’s success story. A vivacious former care-home worker in her early sixties, she had been diagnosed with a particularly virulent form of leukaemia upon which standard chemotherapy had not landed a blow. Her last chance was a bone marrow transplant that had involved gruelling arsenals of drugs. The transplant had gone exceptionally well. She had weathered the side effects of her chemotherapy with remarkable robustness and unflagging good humour, and her donor bone marrow had engrafted beautifully. With normal blood counts that now showed no trace of leukaemia, she was poised at last to leave the hospital and renew life at home with her devoted husband.
Ron had barely left her side throughout her six-week stay in the cancer centre. When the drugs left her skin intolerably dry and itchy, he tenderly rubbed rose-scented lotion into her limbs to sooth them. When chemo put her off eating, he delivered lemon sorbet to her bedside, the only food she could contemplate. ‘Why can’t I meet a Ron?’ lamented the single nurses. ‘Why do I never date the good guys?’
On the Tuesday, I had carefully written her discharge summary, packed with information for her general practitioner. She had been set to go home the next day. But, on the Wednesday morning ward round, something had changed. Sally, ordinarily so irreverent and full of cheek, was subdued, almost vacant, when we arrived at her bedside. Nothing too alarming, only subtle alterations, but the Sally of old was not quite there. Blood tests revealed possible causes. Her sodium was too low; her heart rate, in addition, was far too high, rattling along at an inexplicably ferocious pace. By the Thursday, her deterioration was striking. She smiled only half-heartedly in response to our questions, unable even to vocalise a response. Worse, she seemed distressed at her confusion, picking in agitation at her hospital bedsheets, clawing at the cannula in h
er arm.
‘What’s happened?’ Ron begged my consultant. ‘What’s gone wrong? Why is she like this?’
The truth was, none of us knew.
‘Sally!’ he would say, gripping her hands. ‘Sally, it’s me, Ron. It’s Ron, your husband. Sally, are you there?’
She would turn blankly towards the sound of her husband’s pleas, gently touching his cheek with the back of her hand as though driven by innate compassion for her fellow man, despite no recognition of this one. Too often the effort would cause her to lapse into a twilight state of befuddled doziness, lost in a world of her own. Ron’s anguish was terrible to witness.
Weeks passed. Despite the endless bloods, brain scans and lumbar punctures, no cause of her decline could be found. Nevertheless, Ron insisted Sally would recover. ‘She’s a fighter,’ he would tell me. ‘I know she’s there, and she’s going to beat this.’ Gently at first, we tried to counsel caution, instil the idea that, with no diagnosis and no improvement in her function, the chances of recovery were slowly ebbing away. Ron would not hear a word of it. ‘Sally’s going to get better,’ he repeated, sitting doggedly at her bedside.
Eventually, one day, we made a diagnosis. The drops of cerebrospinal fluid I had eked from her spine in yet another painful diagnostic lumbar puncture were packed with a virus known as HHV-6. Ordinarily a mild and self-limiting infection, HHV-6 tends to colonise us all in early childhood, without our even noticing. Typically, it then lies dormant in the bloodstream, silently accompanying us into adulthood. But later in life, should someone require strong immunosuppression such as the chemotherapy drugs we had given Sally, the virus can sometimes reactivate, running rampant through the brain and occasionally causing severe disability or even death.
Your Life In My Hands--a Junior Doctor's Story Page 23