The opening chapter from Phil Whitaker’s new book, What Is a Doctor?, published by Canongate in July 2023.
Chapter 1 – Medical Records
I was seventeen and had not long passed my driving test. I helped my mum into the back of the car, her hands clutching a kitchen mixing bowl. It was the middle of the night; the south-east London suburbs were eerily quiet in the streetlamps’ orange glow – this was 1983, years before the 24/7 society would begin bustling into eventual non-stop life. Occasional bumps or potholes caused Mum to take a sharp breath or let out a groan. I took every corner carefully but tried to keep up speed. Within twenty minutes I was turning on to the slip road, the headlights picking out the lettering on the large white sign: Queen Mary’s Hospital. Next to that, the iconic blue NHS logo. I followed the red signage for A&E and parked outside the sliding glass doors.
The entrance lobby was brightly lit. The intensity of the glare seemed to make Mum’s headache suddenly worsen; she winced and tried to shield her eyes. A nurse hurried over, took one look at her – waxen with pain and nausea – and ushered us along a corridor to an empty cubicle. The urgency of her response suddenly choked me. A few minutes later, the curtain swept aside. The casualty officer was over six feet tall, white-coated, with a folder in hand. He glanced swiftly at Mum, his eyes appraising her, then laid a hand on her wrist to feel her pulse. I’d been running on adrenaline; my entire focus had been on getting her to hospital. Now, though, the doctor was here: calm, authoritative, efficient, purposeful. He looked over at me and suggested I return to the waiting room. The words conveyed something else: this was his domain, he would take it from here. The relief and the confidence he inspired made a profound impression on me.
So, too, did the candid glimpse I had of him an hour or so later, returning to his on-call room having attended to my mother. I was driving out of the hospital grounds, he was crossing the grass behind the A&E block. Those were the days of 100-hour working weeks for junior doctors. His gait was slow, his head slightly bowed. As he trudged, unaware of being observed, he shrugged off his white coat and slung it wearily over his shoulder. It stirred something my teenage self couldn’t properly name. It lay in the juxtaposition – the capable, confident healer and the human cost behind the professional façade.
It was just a snapshot, I quickly passed him and was gone. I took with me from that night a sense of medicine as not merely a career but as a way of life. A vocation. A calling.
*
Dr Forshaw examined my wrists then propelled his wheeled chair back behind his desk. He tapped his pen like a drumstick against the wood. ‘What have you done?’ The question was posed under his breath; it was him speaking to himself. I couldn’t even raise a wet flannel to wash my face anymore without excruciating stabs shooting up my forearms. It had been going on like this for weeks, ever since I returned from a post-A-levels cycle tour up through the Cotswolds to Stratford-on-Avon and ending in Bristol, where my sister was at university.
To see Dr Forshaw consciously working things out like that. The breadth of knowledge about the body that he must possess. He asked me to show him how I held my bike’s drop handlebars. He emulated the position with his own hands. With a grunt of recognition, he reached for his green prescription pad. As he wrote, he tilted his head back slightly so he could focus through his half-moon glasses. ‘Take these three times a day,’ he said, tearing the top sheet off the pad. ‘It’s tendinitis. You’ve inflamed the tendons.’
He handed across the prescription. I hadn’t planned to say anything but suddenly it seemed the right thing to do.
‘I’m off to medical school soon.’
Dr Forshaw was the archetypal GP of the era – remote in manner, prescriptive in advice. He had been our family doctor from before I was born. On the occasions he would actually look at you, eye contact was brief and made over the top of those spectacles. He did exactly that then. He gave me a brief nod.
‘You’ll find lots to interest you.’ He turned his attention back to his desk and started to write in my notes. ‘It’s a fascinating world.’
*
Caron, the practice manager, reached the landing and waited while I took the final few steps up the staff-only staircase.
‘You’ll be all right in here?’ she asked, gesturing to an open doorway. The office was tiny, no more than a box room really, and dominated by a commercial-size photocopier standing against the far wall. But there was a single chair in front of a small square table.
‘That’s great, thanks.’
‘Would you like a tea? Coffee?’
I smiled and moved past her into the photocopying room. ‘No, thank you, I’ll be fine.’ I hung my jacket on the back of the chair.
‘I’m just along the corridor,’ Caron said. ‘Let me know when you’re done.’
I’d half-expected her to watch over me – medical records are important documents with legal standing and, while anyone can request copies, I’ve never heard of a patient being allowed to access their originals, not even if supervised. The fact that I’m a GP was perhaps sufficient reassurance, but if she’d had doubts then any of the partners in the practice – all of whom knew me well – would have vouched for me. Whatever the rationale for her trust, I was grateful to be left alone. I sat and picked up the Lloyd George envelope she’d put out on the table for me.
I’ve handled countless thousands of them over the course of my career. Made from manilla card, five by seven inches, the bottom and sides are ingeniously concertinaed so that the whole thing can be expanded to form a pocket an inch or so deep, allowing notes, correspondence, lab results and X-ray reports to be filed inside. They first came into use in 1911 as part of the ‘panel’ system founded by Liberal politician David Lloyd George – a health insurance scheme for low-paid working men. In 1948, when the Labour government under Prime Minister Clement Attlee and Minister of Health Aneurin Bevan made the bold promise to provide cradle-to-grave healthcare, free at the point of use, for every man, woman and child in the country, those Lloyd George envelopes must have been the obvious design to adopt for the new National Health Service.
They’re completely outdated. The subsequent explosion in modern medicine’s ability to do things – investigations, screening programmes, surgical procedures, ever more sophisticated and complex drug treatments; our success in keeping people alive into very old age, often accruing multiple coexisting chronic diseases – has swollen the volume of material a typical patient will accumulate over the course of their lifetime beyond anything the designers of the Lloyd George envelope would have thought possible. When I entered general practice in the mid-1990s, receptionists had already become adept at splicing multiple folders together to create supersize notes to accommodate the burgeoning amount of documentation. That skill has now become redundant; computerisation means NHS general practice has become virtually paper-free over the past fifteen or so years, and medical records are now held electronically. Yet every NHS patient still has a Lloyd George envelope (even a baby born today will be assigned one, into which a printout of their computer records will be wedged whenever they move and register with a new GP). These iconic buff folders sit on carousels and shelves in every surgery in the land, untouched and undisturbed. If for any reason you want to go back in time, though, to see someone’s medical history from before computerisation, you will need to get their paper records out of store.
The contents of my Lloyd George envelope were fairly modest. Since my early teens I have been fortunate to enjoy good health. I delved into the folder and extracted the two treasury-tagged sheaves of paperwork from within. One was a collection of hospital correspondence – folded letters to and from consultants, pathology results, radiology reports. The other was a slim bundle of continuation cards bearing, in date order, the handwritten entries made about me by the GP who had looked after me as a child.
It was an eerie experience, reading my own medical records some four decades later, part of my quest to understand myself and what has happened to the profession I joined. There was the exact entry I remember Dr Forshaw making that day in 1984: ‘FCU tendinitis. Rx diclofenac 50mg tds.’ When I consult patients these days I put much more detail: a summary of the history, key examination findings, rationale for my diagnosis, other causes to consider if things don’t work out as expected. I also note down important points from the patient’s perspective: what impact the symptoms are having on their life, whether they have specific fears as to what might be going on. Then I map out the plan we’ve agreed together and what arrangements for follow-up or review we’ve made.
In part this level of detail is self-protective. In the case of a subsequent complaint or legal action – immeasurably more common than they were in Dr Forshaw’s day – I would need my notes to evidence that I’d done a thorough job. They’re also a communication tool. If a patient returns, I can swiftly remind myself of where we’d got to. And with the pressure to provide instant, convenient access, they might end up consulting with someone else were I not to be immediately available. In that case, I’d want a colleague to be able to get at least a sense of what had been going on rather than having to start the story from scratch all over again.
I leafed back through the continuation cards. There they were, almost all of them recorded in Dr Forshaw’s fountain-pen script. I read them simultaneously as an experienced GP and against my fragmented childhood memories.
6 July 1976 (age 10). ‘Labyrinthitis.’ I remember him grasping my head and moving it rapidly this way and that, all the while peering at my eyes, looking for telltale abnormal jerking movements called nystagmus that would support the diagnosis as a way of explaining the dizziness I was experiencing. There weren’t any. I could imagine how provisional the label would have felt to him. Vertigo caused by viral infection of the inner ear virtually never affects children. But he will have written it down as a ‘best fit’ – a way of describing what that episode of illness most closely resembled in case he needed to think about it again.
23 July 1976. ‘?appendicitis.’ I recall him performing a rectal examination in an attempt to work out whether a ‘grumbling appendix’ could be the cause of the abdominal pain I kept being brought in with. The discharge summary from the subsequent admission was there in the other treasury-tagged bundle. The surgeon had convinced himself at the time of operation that my appendix appeared chronically inflamed. But that will have been wishful thinking. The path lab report filed in my records showed that, under the microscope, the appendix had proved entirely normal.
I must have posed Dr Forshaw considerable diagnostic difficulty, something I encounter every day in my own work. There were invariably serious organic diseases that could have accounted for my symptoms, and he will have been loath to miss something. I leafed back further.
1 May 1975. ‘? rheumatic fever’ – a potentially serious complication of bacterial tonsillitis that can cause arthritis along with damage to heart valves. I was in hospital for days, traction weights attached to both ankles, until the doctors there were satisfied there was nothing untoward going on to explain my leg pains, abdominal pain and faint heart murmur.
Reading Dr Forshaw’s notes, their brevity was a locked door: there was no way to tell what else might have been going on in his mind. Faced with the same situation myself – a child repeatedly presenting without biomedical explanations for their symptoms – I would be writing things like ‘What’s going on?’ or ‘Care here’ to signal my disquiet and prompt deeper thought. I might draw in things I knew about other family members, who would generally also be my patients. But even though there was nothing in writing to prove it, I knew that for Dr Forshaw, with continuing care for me across the years, and with intimate knowledge of the family around me, each of those individual episodes must at some point have coalesced to form a story. When I looked more closely, I could see he had been back through the notes at some point and had numbered each of three episodes of apparent labyrinthitis I’d presented with over the course of fifteen months. He was drawing threads together.
It was Dr Forshaw who, in 1968, had diagnosed my father with testicular cancer. Dad was thirty-four and I was just twenty months old. Although nowadays survival is close to 100%, back then, even with the very best treatment, a third of men would be dead within five years. There were no ultrasound or CT scans; it was difficult to tell whether a tumour had already spread at time of diagnosis. Everyone was treated as though it had: surgery to remove the diseased testicle, and intensive radiotherapy to the lymph glands in the abdomen to try to kill off secondaries that might already have seeded. Dad underwent the same process. In hospital recovering from his operation, the patient in the bed next to him was dying, vomiting miserably, and with intractable bloody diarrhoea, the end stages of a cancer that it had not been possible to cure. A grim vision for Dad of what might be to come.
A junior civil servant, Dad had three children under five. He had a young wife who, as was the norm at the time, had given up secretarial work upon marriage in order to run the home and raise the family. Dad also realised, too late, that he had insufficient life insurance. With imminent death on the cards, no insurer on earth would increase his cover. Early death was frightening enough, magnified by the painful prospect of never seeing his children grow. And he was crippled by guilt about the financially bleak future his family would face should he be one of the unfortunate third who would succumb.
Not that I knew any of this as a kid. I remember him lying in his bedroom, tape recorder on. I could hear the disembodied voice of the therapist from behind the closed door, getting him to clench then relax muscle groups all over his body as part of relaxation exercises for anxiety. I found his medication bottle in the kitchen once, the label bearing the euphemistic term ‘The Tablet’. Mental health problems were shrouded in stigma at that time. The name of the actual drug – probably an antidepressant like amitriptyline, or a tranquilliser like diazepam – will have been deemed too embarrassing to have been overtly on display.
Neither the drugs nor the taped exercises were sufficient. Dad was a volatile presence in the home – intolerant of the noisy chaos of three young children, unable to cope when even the slightest everyday thing went wrong. He would erupt with frustration or anger, shouting often, occasionally smashing something to give vent to the pressures roiling inside. Mum would usher us out of the way, entreating us to be quiet, telling us our father was unwell. I had no understanding, nor did I know that the tension that permeated the house was abnormal – it was all I’d ever known. Now, though, I understand what must have been going on. The minor symptoms any of us experience from time to time – a bit of diarrhoea, a twinge of pain – were invariably signs to him that his life was about to come to an end.
Dad lived with the constant fear that, any day, the cancer would return.
April 1975. My parents had closeted themselves in the front room of our pebble-dashed semi. It was where Dad had his bureau, in which he kept all his policies and paperwork, together with a lockable orange tin with multiple compartments, each topped by a coin slot cut into the lid, inside which he carefully distributed pots of cash to meet various categories of household expenditure. I don’t remember doing so but I must have listened for a while outside the room before going in. It wouldn’t have been possible for me to have grasped what was going on otherwise, not in the second it took them to stop talking when they realised the door was opening.
Dad was guiding Mum through all the financial information so she would know where to find everything after he’d died.
I don’t remember how I reacted – the memories are partial and fragmented – but I must have been distraught. Mum, I think, tried to comfort me. Dad went straight out and returned a few minutes later with the brand-new bike they’d squirrelled in our neighbours’ garage and intended giving me for my ninth birthday in a few weeks’ time.
Another memory. Mum making me take a sleeping tablet after yet another evening repeatedly disturbed by me falling out of bed with strange dizziness. I don’t think it was her medication; I think it was Dad’s. I didn’t want to take it, it scared me. Or, at least, Mum’s terse, tether-end voice scared me. I pretended to swallow it but held it under my tongue. The pill dissolved and half my tongue went numb. That panicked me: I called repeatedly for her until eventually she returned. I told her what had happened. She told me to swallow the rest of the tablet down.
One more. Coming downstairs one night, treading ever so lightly on the stairs, going through to the dining room where Mum was sitting in a chair by the side of the gas fire crying like I had never heard anyone cry before. I don’t know if I gave her a hug but I think I will have done. I must have asked what was wrong, because somehow she managed to get the words out: ‘Sometimes I wish I’d never married your father.’
Dizziness. Tummy aches. Strange leg pains. I didn’t make up my symptoms, not in any conscious sense. I was what would now be termed, by GPs like me, a child in difficulty. I was responding to the environment I was enmeshed in, an adult world full of insecurity, dread, emotional volatility, depression, withdrawal and pain.
*
Dad didn’t die. Whatever symptoms he’d developed at that time must ultimately have proved to have been something harmless. I don’t know how long it took for him to be given the all-clear – or whether he was able to believe it. By then he had seen his mother die of the disease, his father-in-law also. It must have seemed like cancer was all around. And it was not something people survived. It was not something even talked about in those days. People hardly dared utter the word, lest in doing so they invited fate to visit it upon them. To have been a cancer patient in 1970s Britain was to live emotionally isolated and somehow ashamed. How could Dad even have begun to communicate his feelings and fears when cancer was an unspeakable disease?
It might have been the sequential non-organic illnesses I kept experiencing, or perhaps it was my brother’s intractable stutter, or maybe there was something else in our family’s tableau. Most likely it was everything combined. The pieces slotted into place in Dr Forshaw’s mind. I remember the stiflingly hot car journey, crawling along congested roads across South London: Bexleyheath, Eltham, Lewisham, Peckham, till eventually we arrived at the Maudsley Hospital in Denmark Hill. The therapist Dr Forshaw had referred us to got us children to draw pictures of our family. It was my sister who sketched the most telling illustration: three siblings huddled around Mum. Dad on the far side of the sheet of paper. On his own.
Mum still refers to it as his ‘summer in the garden’: the realisation of the impact he was having on the family completely broke him. He retreated outdoors, sometimes working the vegetable patch and fruit bushes, more often just sitting in a chair staring at The Times and only occasionally turning a page. Keeping himself out of harm’s way. Eventually, at some point, he must have made up his mind. He came back indoors.
It might have been gaining popularity in America but in stiff-upper-lipped 1970s Britain – where men weren’t supposed to have emotions, and certainly never to cry – therapy remained an alien concept and the idea of counselling had yet to be born. Dad took up the Maudsley’s invitation to join a psychotherapy group, attending weekly sessions long term. I found a photo of the group a few years ago, mounted in one of my parents’ albums. It was taken at a lunch to mark the end of the group’s eighteen months together. Gathered round a table on the patio in someone’s back garden. Four women, swirly patterned clothes, curly perms. Two men, Dad with his wide-collar shirt and Brylcreemed short back and sides. Incrementally, the demons that plagued him had been brought into the daylight and cut down to size.
This is no fairytale; there was no magical healing. Dad remained a traumatised man, and the spectre of dying a wasting death from metastatic cancer never really left him. But he understood himself better, and within the psychotherapy group he had experienced being understood by others. And with those things seemed to come more control. Life at home improved. The second half of my childhood was incomparably transformed.
*
What is a doctor?
When I entered medical school in 1985, I had role models that had given me a firm answer to that question. That nameless casualty officer was the doctor as heroic figure, there to render assistance in times of crisis, often at considerable personal cost. Dr Forshaw was the wise general practitioner, able to diagnose a huge range of conditions from minor musculoskeletal annoyances through to life-threatening cancers, and to take in complex emotional and psychological issues like family trauma along the way. The power of his practice came not just from knowledge and skill; continuity of care and a trust-based relationship were key. Over a period of years, you got to know and rely on your doctor, and your doctor got to know you and the circumstances of your life.
When I entered general practice in the mid-1990s, everything I encountered reinforced and refined what I believed about my role. I was not merely to be a next-generation Dr Forshaw, I was one of a new breed. Aloof paternalism was being supplanted by a new style of practice that sought to forge rapport and partnership between each individual patient and their physician. Holistic, patient-centred medicine was becoming the norm. At the same time, we were in the foothills of what continues to be a seemingly endless, exponential growth in medical advance. Never have doctors been able to do so much in so many diverse disease scenarios. The scientific education I’d been afforded meant I was well equipped to keep my knowledge, understanding and skills continually refreshed.
Yet now, as I enter my final decade as a GP, the answer to the question ‘What is a doctor?’ has never seemed more uncertain. Hospital practice has altered radically. The traditional ‘firm’ – tightly bound groups of junior doctors of varying degrees of experience looking after their particular consultant’s patients – has vanished, replaced by teams who spin-pass patient care at every shift change. Consultants have become super-specialised, focusing on ever narrower areas within their field, with patients often finding themselves under multiple different specialists, none of whom is able to take an overarching view.
In general practice, continuity of care and trust-based relationships are in inexorable decline. Fewer and fewer doctors are entering partnership and taking on the long-term commitment to their patients that this entails. In many areas, practices have merged and grown to become impersonal mega-surgeries staffed principally by salaried GPs and locums who come and go. Patients complain of never being able to see the same doctor twice, of never knowing the person they’re dealing with. Since 2015, successive governments have promised thousands more GPs to address chronic shortages, yet every new entrant is negated by a burned-out doctor reducing their hours or leaving the NHS. Gaining a consultation with someone, anyone, has for many patients become an almost impossible battle, with barriers and long waits the norm. New methods of access – online, telephone triage, 111, walk-in centres – seem to offer solutions, but simply serve to fragment care into disjointed episodes with the next available clinician.
No one seems any longer to hold responsibility for an individual’s care.
This book is the story of what has happened to the role of doctor over the course of my career. There is no single story to tell. There is instead a multiplicity of stories, unfolding in parallel and interacting in unanticipated ways, each contributing to the reasons why my profession, and the experience of the patients it seeks to serve, is unrecognisable from when I joined with such idealism thirty-odd years ago. These different stories also illuminate what ails the NHS – a cherished British institution that appears increasingly unable to meet the nation’s healthcare needs no matter how much we seem to spend.
We look back with incredulity on past eras of medical history, in which bloodletting, purging, mercury poisoning and mutilating surgery were undertaken with the best of intentions by our forebears. How will succeeding generations view our own practice? We are turning ever greater numbers of healthy people into patients. Potent pharmaceuticals are prescribed in ever more bewildering and often toxic combinations. Decisions over treatment are taken by professionals in disconnected silos, both constrained by and complacent about the guidelines that dictate what they should do. We have lost sight of the vital importance of relationship to medical practice, both to deliver consistency of care and to ensure that humanity remains at the heart of what we do.
In diagnosing the causes of our current dis-ease, four imperatives emerge that will be vital if we are to free ourselves from the dysfunction in which we have become embroiled. These are challenges both for my profession and for those in government charged with providing the nation’s healthcare. They will involve looking afresh at the encroachment of politics on medical practice, at the balance between specialism and generalism, how we manage the prevention of illness, and a fourth fundamental question that goes to the heart of our duty of care.
Central to these remedies are patients themselves. People whose voices continue to be drowned out by the din of political initiatives, organisational reforms, and commercial, academic and professional interests that have created our current crisis. With an understanding of what has happened to their healthcare, patients can demand that their voices be heard – in the consulting room, in their communities, and in the formation of policy by those who govern. These patients are all of us: you, me, your family, mine too. This book is for us all.