Side Effects E-Book

David Haslam

• Herausgeber: Atlantic Books
• Kategorie: Fachliteratur
• Sprache: Englisch

Seitenzahl: 421

Veröffentlichungsjahr: 2019

Beschreibung

***A Waterstones Best Books of 2022 pick*** 'David Haslam is uniquely placed to reflect on how healthcare has lost its way, what needs to be done to fix it and why all of us are responsible for doing so... The importance and timeliness of his messages shines through.' Dr Phil Hammond 'A fascinating and important book.' Dr Amanda Brown With a single drug in the UK currently costing £340,000 per patient per year, or a gene therapy in the USA being costed at $1.2million, who should get such treatments, and how can we begin to afford them? Should we all be entitled to timely mental health therapy? How should we care for our old? As we grapple with the world's worst pandemic for a century, our minds are on our health more than ever. But what should we rightfully expect of doctors? In this original and thought-provoking book, Sir David Haslam explores what good healthcare should achieve and asks how we pay for it. Informed by patient stories and data from across the world - from US big pharma to Britain's NHS - this is an urgent and often moving examination of our most important asset: our health.

Leseprobe

SIDEEFFECTS

First published in hardback in Great Britain in 2022 by Atlantic Books, an imprint of Atlantic Books Ltd.

Copyright © David Haslam, 2022

The moral right of David Haslam to be identified as the author of this work has been asserted by him in accordance with the Copyright, Designs and Patents Act of 1988.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of both the copyright owner and the above publisher of this book.

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A CIP catalogue record for this book is available from the British Library.

Hardback ISBN: 978-1-78649-536-5

E-Book ISBN: 978-1-78649-538-9

Paperback ISBN: 978-1-78649-539-6

Printed in Great Britain

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For my family

Contents

Foreword

  Chapter 1: We’ve Got a Problem

  Chapter 2: How Did We Get Here?

  Chapter 3: Paying the Price

  Chapter 4: Why Is it All So Expensive?

  Chapter 5: Valuing a Life

  Chapter 6: Better than Cure

  Chapter 7: Overtreatment and Overdiagnosis

  Chapter 8: Hearts and Minds

  Chapter 9: Age and Ageing

Chapter 10: And in the End …

Chapter 11: Care in the Future

Chapter 12: A Way Forward

Acknowledgements

Endnotes

Index

Foreword

I’ve spent my life working in healthcare. For many years, I was involved in both devising and implementing many aspects of local and national health policy, and I’ve also experienced it first-hand, as a patient. From every perspective, there is clearly a mismatch between supply and demand. While resources can never be infinite, the demand for healthcare in Britain appears to be inexhaustible. This imbalance is a source of immense tension, and the situation is only getting worse. In this book, I will first assess this extraordinary challenge and then attempt to suggest how we might tackle it.

In the past few years, the NHS has faced a double whammy; first the government’s pursuit of austerity reduced its capacity and then the immense challenge of Covid-19 tested it to its limits. Even before this, it faced massive and unsustainable pressure. While increased funding is critically important, it cannot be the only solution to every problem.

The coronavirus pandemic has, to an unprecedented degree, devastatingly exposed the challenge that is facing us. For a while, it trumped everything else, and not just in Britain. All around the world, governments recognized the supreme importance of health and healthcare, as well as the key role that the state has to play in protecting its citizens.

In ancient Rome, the statesman Cicero wrote that ‘the health of the people is the supreme law’. Two thousand years later, as the UK stood on the brink of crisis in March 2020, the Chancellor of the Exchequer Rishi Sunak said, ‘Whatever extra resources our NHS needs to cope with Covid-19, it will get. Whatever it needs, whatever it costs, we stand behind our NHS.’ In countries around the world, politicians displayed the same sentiment. Funds somehow appeared, and no expense was spared. Repeated comparisons were made to the challenges of wartime. In March 2020, the prime minister Boris Johnson declared that his government would act ‘like any other wartime governments’ to support the British economy and take ‘steps that are unprecedented since World War II’.1 Other world leaders used similar descriptions. The US president Donald Trump referred to himself as a ‘wartime president’ and Andrew Cuomo, governor of New York, reportedly said that ‘ventilators are to this war what bombs were to World War II’.2

The battle with disease – with a single disease that spread easily and posed a particular threat to the eldest and most vulnerable – was in full swing. Humankind had to fight this virus with whatever weapons it could muster, which initially meant prioritizing healthcare over the needs of the economy and all the other various priorities that usually jostle for attention. It was extraordinary, but it was necessary. However, things were far from typical. Funds are not infinite, and they never can be. In more normal times, when we are not facing a global pandemic, we still find ourselves having to make life-and-death choices. After all, healthcare can be massively expensive. Every year, the cost of care escalates, and the money has to be found to pay for it. Even prior to the pandemic, in 2017, the UK spent £197 billion on healthcare, equating to £2,989 per person.3 Research scientists continue to develop new drugs and therapies; the potential benefits that they offer to humankind are phenomenal, but the accompanying prices almost inevitably go up and up.

Even before Covid-19, the proportion of national wealth that was spent on healthcare was increasing every year, and every prediction of future trends showed that this challenge was only going to worsen. Although this issue is facing every country on earth, we seem remarkably reluctant to discuss it. Society might in the short term have debates about whether a particular amount of spending is sufficient, but we rarely consider the longer-term perspective. Burying our heads in the sand and ignoring a deepening problem can never be a sensible long-term policy, however tempting it might be.

However, the increasing cost of care isn’t our only challenge. Of the diseases that posed the greatest threat to the average family just a few decades ago, many have now been eradicated. Life expectancy has also increased since then, yet people are as anxious about their health as ever, and there has been no let-up in demand for the medical profession, particularly for reassurance. A hundred and fifty years ago, a typical day’s work for a British general practitioner would have consisted of a constant stream of patients with pneumonia (which was frequently fatal), diphtheria, cholera and acute rheumatism, in addition to the flood of minor problems that all family doctors would still recognize today.4 Today’s GPs might look at that workload from a previous age and notice that almost all these illnesses have either been wiped out or are now eminently treatable. They might find themselves wondering what would be left for them to do, but as some challenges have been eliminated, new problems have arisen to take their place. Family doctors today are busier than they have ever been – and this is discounting the impact of the Covid pandemic. So, what is going on? Can we foresee a world where healthcare facilities sit unused while a healthy and happy population has no need for care? Or will the predictions that envisage perpetually rising expectations and demand prove to be accurate? If they do, is this a sustainable model? And what is driving it?

This dilemma is the subject of this book. If we can accept that there will never be enough money to cover every possible eventuality – and it’s hard to imagine that there ever could be – how should society make choices? What is the real value of healthcare, and what is the endgame? Disease and infirmity will never disappear completely, so we need to ask ourselves whether we are using the available funds in the best possible way. When can it be justifiable to spend more money on healthcare, if that means taking money away from other areas of our lives, which might include education or even security? This was another challenge that was thrown into sharp focus by Covid. When populations were locked down, although they were relatively safe from direct impact by the virus, the restrictions had a damaging impact on happiness, education, physical health, mental health and wellbeing. Governments found themselves having to balance the dangers of the virus with the dangers of lockdown. If a country’s economy suffers, a major impact on its population’s health will follow. And conversely, if the health of the nation suffers, there will be a major negative impact on the economy. So how can we decide where our priorities should lie?

The problem is a global one, and in the long term, simply increasing healthcare spending is unlikely to be the sole solution. That said, the challenges facing the National Health Service in the UK have been exacerbated by a decade or more of underfunding; I should emphasize that I will most definitely not argue in this book that British healthcare currently has enough money. Years of austerity following the global financial crisis of 2008 have had a major impact. Waiting lists had risen to 4.6 million even before Covid attacked, and staffing levels were clearly becoming seriously inadequate.5 As the wide-ranging LSE–Lancet Commission on the future of the NHS made very clear, the Covid-19 pandemic has reinforced the economic case for investing in health, which is crucial for both fiscal sustainability and societal wellbeing.6 The commission estimated that in order to implement its funding recommendations, total expenditure on the NHS would need to increase by around £102 billion in real terms, which will represent around 3.1 per cent of the UK’s gross domestic product in 2030–31.

In September 2021, Boris Johnson announced a new funding settlement for health and social care in England, which included an additional £6.6 billion for NHS England in 2022−23 and £3.6 billion in 2023−24 – on top of the plans made before the pandemic – as a result of ongoing pressures from Covid-19. Few people working in healthcare felt that this would be sufficient. Even the Institute for Fiscal Studies stated that while the extra funding would help for about two years, it was unlikely to be sufficient in the medium term.7

These are eye-watering sums, and there is no doubt that the NHS is facing an uphill struggle if it is to catch up once the pandemic is over. But it is equally clear that in the longer term, a more fundamental reconsideration of how we perceive healthcare is required. Indeed, while the population has, in general, never been healthier, we seem to consider ourselves to be more at risk of falling ill than ever – and we are more anxious about our health than at any time in our history. Despite all the advances we are making in our ability to diagnose and treat illness, the demand on healthcare services continues to rise inexorably.

The key question I will return to throughout this book is a simple one. What is it that we are really trying to achieve through our healthcare system? And if we have a goal in mind, are we going the right way about trying to achieve it?

Today, many aspects of human existence are at risk of being medicalized – another side effect of the hard-won successes of modern medicine. But is this really healthy? Is it logical? And is it beneficial? In the future, it may be that we look back on current events and realize that the pandemic opened our eyes to this challenge. With the vast level of government spending that Covid-19 triggered, having threatened the long-term sustainability of health systems, we need to find ways of doing more with less. We have an opportunity to ensure we are focused on doing the right things, and we should as a priority tackle overmedicalization and the unnecessary tests, diagnoses and therapies that can potentially cause harm as well as leading to waste – not just of money, but of time and expertise.

Again, I must stress that this is absolutely not a book about how we should fund our healthcare systems in the short term. In most countries, the pandemic has caused immense urgent challenges, whether because of the potential impact of long Covid, the huge disruption that it has caused to other aspects of care or its massive impact on a nation’s economy. However, in the medium to long term, it is vital that we look at how healthcare is evolving and try to define the role it should play in a modern society. What is it that we are really trying to achieve?

It is clear that many of the determinants of health, far from having anything to do with healthcare, are profoundly linked to social factors such as education or poverty. When does society decide that problems require healthcare input, and when should they be treated as societal issues? We could continue to spend ever-increasing sums, but it must be clear what we are hoping to achieve. While I am absolutely not a health economist, I have observed these challenges first-hand and from all manner of perspectives.

If you have infinite wealth or live in a country with an unlimited healthcare budget, then these questions won’t apply to you. But my guess is that you don’t. Healthcare costs are perpetually escalating all over the world, and these are real challenges that will affect the vast majority of people on the planet. And this isn’t a book about what some people have called ‘death panels’, about how governments might callously determine who deserves to be treated and who will be left to die. It’s not about rationing – it’s about rationality. It’s not about theoretical fears – it’s about a real world that we need to face up to – and now.

This is a vital debate, and it won’t go away with wishful thinking. My hope is that this book will ask important questions and begin to suggest some answers.

David HaslamApril 2022

CHAPTER 1

We’ve Got a Problem

In late March 2020, the planet seemed on the brink of catastrophe, as the Covid-19 pandemic threatened to overwhelm health services around the world. In the UK, inspired by the speed with which the Chinese government had designed and built a 1,000-bed hospital in Wuhan, the city where the virus first emerged, a group of military planners and staff from NHS England visited ExCeL Exhibition Centre in east London’s Docklands. Just three days later, on 24 March, the health secretary Matt Hancock announced plans to convert the conference centre into a 4,000-bed unit, the first in a series of what were to be called ‘Nightingale hospitals’.1 The scale and speed of the development was breathtaking; on 3 April, Prince Charles formally opened the impressive new facility via video link. As a demonstration of determined action in the face of a terrifying pandemic, it was just what the nation needed.

However, after the initial drama, and a raft of enthusiastic headlines, none of these facilities solved the problems they had been designed for. Of the seven Nightingale hospitals that were built in England, only three ever actually treated patients; by January 2021, these hospitals had between them treated a total of 272 patients, despite a cost to the taxpayer of more than £500 million. The facilities in Birmingham, Sunderland, Bristol and Harrogate didn’t treat a single Covid-19 inpatient during that time.2 London’s Nightingale hospital was closed in May 2020, having treated just fifty-one patients, although it was subsequently repurposed in January 2021 to take patients without Covid-19, in order to relieve the pressure on beds in the capital’s other hospitals.

The reason for the facilities’ apparent failure was straightforward: the UK simply didn’t have the trained nursing staff and other personnel to work in them. Delivering healthcare always needs people, and in spring 2020 the people just weren’t there. Years of damaging austerity, combined with a serious pre-existing workforce crisis, had left the NHS with precious little spare capacity when it came to staff. While the achievement of designing and building the Nightingales in a matter of days was truly impressive, without enough doctors, nurses, personal protective equipment, ventilators and respiratory therapists to work in them, it was a gesture that was as empty as the hospitals would prove to be.

The long-term challenge

I do not intend to use hindsight to criticize the many difficult and urgent decisions that were made in the midst of a crisis. Nor is this a book about how healthcare systems should attempt to recover from the impact of the pandemic, about how we should tackle the challenge of social care and the backlog of non-Covid cases that the former NHS chief executive Sir David Nicholson has described as ‘truly frightening’. These are clearly all incredibly important issues, but behind them lie a number of even more thought-provoking long-term questions.

My aim is to examine the long-term challenges that are facing every healthcare system in the world. While the pandemic has opened our eyes to the magnificent achievements of modern science, it has also focused attention on the challenges that we face when demand for healthcare outstrips supply. In the early days of the pandemic, the world watched in horror at what was happening in northern Italy, where doctors found themselves having to make life-and-death decisions based on the availability of beds and staff. When we don’t have the necessary resources to provide all the care that people might need, what do we do? And what should we do?

After all, this isn’t a problem that will only arise during a pandemic. The cost of healthcare is escalating almost everywhere in the world, as is the demand for care. Thanks to advances in science, both the offers and the expectations of what can be achieved are growing, but however much we may wish it were otherwise, there will never be enough money to pay for everything. A World Health Organization report concluded that healthcare spending is growing faster than the economy in nearly every country it looked at.3 So how do we make the right choices when it comes to healthcare spending? What gives us the best bang for our buck?

Covid-19 has dramatically heightened our awareness of the social determinants of health, and in particular the damaging impact of deprivation. In the UK, black, Asian and minority ethnic groups were far more likely to die in the pandemic than the white majority. And according to the Office for National Statistics, the Covid mortality rate in the most deprived places in England was double that of the least deprived areas. A report by the All Party Parliamentary Group on Longevity titled ‘Levelling Up Health’ and published in April 2021 warned that the UK has the ‘worst population health in Europe’, and concluded that this was partly responsible for the tragically high number of Covid-19 deaths.4 If mortality rates in all local areas of England had been as low as in the least deprived localities, the number of deaths would have been 35 per cent lower. Deprivation kills, and it was clear that we hadn’t all been in it together.

The same pattern was repeated all around the world. In the US, research showed that residents of the most disadvantaged counties were at a dramatically increased risk of death.5 In Spain, data published by the Catalonian government suggested that the rate of Covid-19 infection was six or seven times higher in the most deprived areas of the region than in the least deprived.6 Likewise in Brazil, the burden of Covid-19 has been greater in areas with high social deprivation.7 And in Sweden, studies have shown that being male, having less disposable income, a lower level of education, not being married and having immigrated from a low- or middle-income country all independently predict a higher risk of death from Covid-19.8

It should be obvious by now that the solution to this immense challenge is not simply to build more hospitals, which may make for good headlines but doesn’t necessarily solve the problems. It is also critical that healthcare systems have the capacity to face future emergencies, even if we don’t know what they are. Early in my career as a doctor, I learned that the one thing that you could predict with certainty was that something unpredictable would happen almost daily. As a result, it was vital to build in both the time and the capacity to deal with unforeseen events – running everything at full capacity all the time was a recipe for disaster, a rule that applies just as much to the National Health Service as it did to my small rural general practice. The UK government had certainly not learned this lesson in the years prior to the pandemic. While I understand that it is politically challenging to allocate funds for something that might not happen, we have since March 2020 learned the appalling impact of failing to prepare.

As Sir Simon Stevens, then chief executive of the NHS, told the Parliamentary Health and Social Care Committee in early 2021:

Should we try to build more resilience into public services rather than running everything to the optimum just-in-time efficiency? I think that is one of the big lessons from the pandemic … Resilience requires buffer, and buffer can look wasteful until the moment when it is not.9

The LSE–Lancet Commission on the future of the NHS clearly showed that public spending on health has consistently been lower in the UK than in most other high-income countries. At a time of increasing need, spending on social care has decreased in real terms, and most other wealthy countries spend more than us. Furthermore, after decades of improvement, increases in life expectancy have begun to slow, and for males they have even started to go into reverse.10 We clearly have plenty of catching up to do.

Preparing for the future

But there are ways of preparing for the future besides simply increasing spending. The remarkable success of the Covid vaccination programme, both in the UK and elsewhere, has brought renewed attention to the immense value of prevention, while the example of the UK’s Nightingale hospitals beautifully demonstrates an important aspect of modern healthcare. Simply providing more hospital beds is rarely the whole answer – unless, of course, a lack of hospital capacity happens to be the problem.

If, as seems clear, there is never going to be enough money, how do we go about making choices? What is the real intended value of healthcare, and what is the best possible outcome? After all, disease and infirmity will never disappear completely, so how can we ensure that we are using the funds available in the best possible way?

Once the immediate challenge of recovering from the pandemic has been addressed, we should start to anticipate future problems – and it is clear that simply spending more money year after year is unlikely to be the sole solution. As we look beyond a world dominated by Covid-19, we must ask two critical questions. What is healthcare? And what is it for?

While these questions might seem straightforward, there are certainly no simple answers. In all too many countries, there is little clarity about what healthcare systems are ultimately for and what they are trying to achieve. And what are the limits – where might the boundaries of healthcare be? After all, if we don’t know what we are trying to achieve, how can we ever budget for it? While many healthcare leaders develop impressive medium-term plans, their actual behaviours and choices in a crisis do not always seem to match their noble aspirations. In any other sphere of life, we would question the wisdom of pouring money into projects without strictly defined boundaries. This would be no more logical than trying to fill a bucket with a hole in the bottom – and about as effective.

Your answer to the question of what healthcare is for will inevitably depend on your personal perspective. A patient needing care or their loved one, for instance, will see things very differently from a doctor treating patients, a healthcare administrator delivering services or a policymaker planning services for the future. As someone who has worn all four hats, I know how challenging this can be.

As a patient

If you are a patient or their loved one, the question of what healthcare is for will probably seem relatively straightforward. You will naturally want everything that can be offered to make and keep you – or your relative or friend – fit and well with a long and active life. That doesn’t seem too much to ask.

In late 2018, just after I’d started to plan this book, I found myself needing urgent and aggressive treatment for a form of head and neck cancer. This meant undergoing a couple of operations, followed by thirty sessions of radiotherapy and five of chemotherapy. At the end of my first bout of radiotherapy, as I sat up from the bench where I had been anchored in a claustrophobia-inducing plastic mesh mask under a massive radiotherapy machine, I recall thinking how lucky I was to be living in a country with a health service that meant that I didn’t have to think about the cost of the treatment I was receiving, let alone pay for any of it. It felt extraordinary that other citizens had contributed towards the enormous cost of my care through their taxes, in the same way that I had contributed to the care of others. Cancer was quite worrying enough, without the added fear of bankruptcy. Indeed, the only personal costs that I faced during many months of treatment were for the fuel in my car for my journeys to the hospital and the parking costs when I got there, although research from Macmillan Cancer Relief in 2021 showed that around four in five people with cancer in the UK face additional living costs or a loss of income, amounting to an average of £891 a month on top of their usual spending.11

During my treatment, I was very aware that the medical care I was receiving was seriously expensive, and not just because of the drugs and radiotherapy. I was looked after by an extensive and skilled multi-disciplinary team of doctors, nurses, healthcare assistants, radiotherapists, physiotherapists, speech and language therapists, dentists, dental hygienists, audiologists, dieticians, receptionists and porters, as well as the behind-the scenes administrative, managerial and support staff who matter so much to the smooth running of any hospital.

In countries that don’t have a universal healthcare system, the costs to the patient can be astronomical and are a leading cause of bankruptcy. We should remember when we are considering the cost of healthcare that it isn’t just an abstract matter of academic interest – it can be central to personal questions of affluence and poverty, of life and death. This is a challenge that ultimately impacts on every one of us.

As a doctor

I worked as a doctor for nearly forty years – initially in hospitals and then as a general practitioner, dealing with the day-to-day challenges of life for a practice population in a rural area of the UK. I once calculated that in the course of my career I must have carried out about a quarter of a million consultations. In each and every one of them, my prime responsibility was to the individual patient.

Like all doctors, I was registered with the UK’s General Medical Council, the body that maintains the official register of medical practitioners. The responsibility of the doctor to the individual patient in the GMC’s key document, ‘Good Medical Practice’, could not be more clear. The first rule is: ‘Make the care of your patient your first concern.’

However, if only life was quite that simple; the reality of life as a doctor is rather more nuanced. In another document titled ‘Leadership and Management for All Doctors’ the GMC has stressed that ‘being a good doctor means more than simply being a good clinician’, going on to advise its doctors to ‘use resources efficiently for the benefit of patients and the public’.

What does this mean in practical terms? If I see a patient with a relatively trivial symptom that is causing them some annoyance without being in any way life-threatening, and the only treatment available is massively expensive, what should I do? If I refer them for treatment, am I failing in my commitment to ‘use resources efficiently for the benefit of patients and the public’? But if I don’t, am I choosing not to make the care of my patient my first concern? Would my decision be different if the patient was paying for their own treatment?

In my years as a family doctor, I regularly had to make such decisions, while considering issues such as the impact of referrals on waiting times. If GPs chose to refer every patient to hospital care where there was a chance it would be helpful, it is likely that the backlog of work generated would significantly reduce access for those who need it most. If I was a patient with a minor symptom, I might feel irritated at not being referred, but if I was a patient with a serious condition and my care was impacted by other people’s less dangerous problems, I would almost certainly feel even more dismayed. In any system where funding is finite, trade-offs are inevitable. If we could be clearer about the most effective use of healthcare, we would all benefit.

As a healthcare administrator

For those involved in planning and administration, as I have been myself, these challenges become even more acute. People who run hospitals or are involved in the organization of a regional or national health service must make major trade-offs. Every day they must take decisions and make choices about the purchase of equipment, the availability of staff, how to find a balance between prevention and treatment, the number of beds that need to be available, the type of specialists that should be recruited, the staff-to-patient ratio and a great deal more.

As a simple example, if you are responsible for a large geographical area and need to offer the greatest benefit for the management of stroke, how do you share funding between prevention, diagnosis, the acute management of people who have already experienced a stroke and their long-term support? Although it is likely that the most dramatic new diagnostics and treatments will create headlines and offer the most obvious benefit, the funding of well-targeted and effective prevention might ultimately have more benefit. If you are running a private hospital that is reliant on attracting work to generate income, your investment might be straightforward. But if you are looking at the overall impact on an area, your choices might be very different, with prevention potentially becoming a more attractive option.

The problem with prevention is that it tends to be invisible. We almost never meet someone who is aware that prevention has helped them, because the whole point is that it stops something from happening. It is entirely possible that I have so far avoided a heart attack because of preventative advice I’ve been given by my doctor. However, as I’ll never know for sure, there’s nothing to celebrate. During the vaccination programme for the Covid-19 pandemic, we have begun to look at prevention differently, with its benefits finally visible to many people. The scale of the campaign, and the sense of safety it has brought, has made many of us appreciate the benefits of preventative healthcare. But in many other areas of medicine the situation is very different, with prevention regarded as the poor relation.

As a government

From a governmental perspective, healthcare is astonishingly expensive. In the early phases of the coronavirus pandemic, an astronomical level of resource was required to keep the population safe. With a rapidly spreading and invisible but identifiable enemy, governments made sure the money could be found – at almost any cost. But in more normal times, the challenge doesn’t disappear – far from it, in fact.

I spent over a decade working at a senior national level in the British NHS, culminating in six years as chair of NICE, the National Institute for Health and Care Excellence. Part of the role of the institute is to look at new and expensive technologies and treatments, in order to determine if they are cost-effective and should be used by the NHS. As a result, my experience extends from the truly personal – my own experience of cancer – through to the national and even the international. I was privileged to advise senior ministers in countries around the world, all of whom face the same extraordinary challenge of affording healthcare. And when I did, I would ask every one of them the same question, which I also posed in a session at the World Health Assembly in Geneva: ‘Do you really know what your healthcare system is trying to achieve?’

If we examine our healthcare systems from a historical perspective, we find that many of them were introduced to ensure that a country had a sufficiently healthy workforce, or a sufficiently fit population to defend itself in case of war. However, as the possibilities offered by medicine and pharmaceuticals have expanded beyond all recognition, the activities on which money can be spent have become disconnected from these original aspirations.

If this feels a little abstract and theoretical, consider a 2019 report from the Guardian in which a clinical psychologist described loneliness as ‘social isolation syndrome’ and suggested that drugs might be developed to address the problem.12 This is a remarkable idea, and I will repeat it here lest it seem implausible. This was a serious discussion in which medication was being proposed as a treatment for loneliness. I do not wish to undermine the importance of loneliness, to minimize the heartache it can cause or to disregard the strong correlations that exist with ill health. But what concerns me is the question of whether expanding the remit of therapeutic healthcare at a time when our healthcare systems are facing escalating costs is either logical or wise. The overmedicalization of everyday life has an inevitable impact on the systems’ capacity. For instance, the recognition that obesity and a lack of physical fitness were risk factors that made the development of severe illness with Covid-19 more likely led Boris Johnson to announce that GPs would prescribe cycling.13 The underlying idea – cycling is good for you – is excellent. However, the idea that doctors should be involved in prescribing this activity was symptomatic of an approach to healthcare that seems entirely unsustainable.

Ever-increasing costs and uncertain intentions are not the most logical of companions, as they can lead governments to pour good money after bad without being sure why. It is bad enough to have insufficient funds to treat all the disease and challenges we have already identified, but the situation will be many times worse if the wish list of healthcare keeps expanding.

What’s it all for?

I am aware that my suggestion that we don’t know what we want our healthcare to achieve might sound ridiculous, so let me explain. While I am sure that you knew exactly what you wanted from your own healthcare when you last went to see your GP or consulted another health professional, that’s not quite the same thing as how we determine what we want the system as a whole to achieve, or where the health budget might best be spent.

Again, the coronavirus pandemic shone a light on this question. During the initial phase of that crisis, our healthcare system’s primary aim was to stop people dying from Covid-19. The massive resources that were pumped into health services all around the world were spent to keep people breathing and to give their families hope. This clarity led to a rapid re-prioritization, with funds, staff and expertise being moved to where they might best address the pandemic. For a while, organ transplants were halted and even radiotherapy was deferred. Almost no aspect of our healthcare system was unaffected. But these were not normal times; as we negotiate a ‘new normal’, the challenging questions still have to be faced.

No healthcare system can be designed to deal with a pandemic, and nor should it be – that isn’t its job. Although it must absolutely be ready to adapt to an emergency, it cannot possibly sit in a state of readiness for an event that is likely to happen no more frequently than once every few decades. It isn’t feasible to have massive numbers of extra staff and beds waiting on the off-chance. Instead, we must plan for the everyday and have contingency plans for the unexpected.

In normal times, the role of healthcare systems is to deal with people’s day-to-day needs – whether that is in community-based primary healthcare, including general practice, or in hospital. To use an analogy, these organizations are a little like lorries – fantastically effective and generally reliable, but very slow. In a pandemic, we need something agile – a suitable metaphor might be a Porsche. We would never expect a Porsche to do the job of a lorry, or vice versa. They are each perfectly designed to fulfil a particular role and poorly designed to do each other’s.

In the same way, the pandemic required a fundamentally different type of healthcare system, with dramatically increased hospital capacity, fully staffed intensive care beds and a strict focus on dealing with the most acute and the most urgent problems – an entirely different expectation compared to the system we need in normal circumstances.

Away from a crisis, you might believe that every healthcare system is designed both to treat disease and to maintain and improve the health of its population. However, while this certainly sounds logical, if this really is the intended approach, why would we not invest more in prevention, in understanding the causes of ill health and in education – in health rather than healthcare?

Health versus healthcare

I am well aware that a healthy population is likely to be a productive population, which might mean that high-quality healthcare could conceivably be seen as self-financing. However, at present, this feels more like theory than reality. Even prior to Covid-19, the proportion of GDP spent on health in most countries was increasing. And while the underfunding of healthcare has long been an issue, it does not automatically follow that simply providing more money is the only solution.

Although they are related, health and healthcare are in no way the same thing. The Institute for Healthcare Improvement has described the fundamental purpose of healthcare as being ‘to enhance quality of life by enhancing health’. Nevertheless, when funding has been reduced and money is tight, cuts tend to be made in the same areas. Preventative healthcare and public health may be spoken of as being a genuine priority, but the behaviour of governments around the world suggests the opposite. As an example, the US spends just 2.5 per cent of its healthcare budget on public health. In spring 2020, at the onset of the Covid-19 pandemic, underfunded health departments were struggling to deal with an epidemic in opioid addiction, climbing obesity rates, contaminated water and easily preventable diseases.14

The situation is, of course, immensely complex. How do we ever begin to balance the vast sums that can be spent on a single seriously ill patient against the distressing conditions in which many frail and elderly people live out their final years, often as a result of a lack of adequate funding?

In 2015, the Daily Telegraph reported that the price of a single year’s treatment of a drug called eculizumab, developed to treat a rare type of blood disease called paroxysmal nocturnal haemoglobinuria, was £340,000 per patient, which would mean a total lifetime cost of around £10 million for each sufferer.15 In 2019, the US Food and Drug Administration approved what was at the time the most expensive drug in the world, a gene therapy developed by the Swiss multinational pharmaceutical corporation Novartis that treats spinal muscular atrophy at a cost of $2.1 million per patient.16 The price of this drug, which has the brand name Zolgensma, is more than double that of the world’s second most expensive drug, an $850,000 treatment for blindness called Luxturna. In March 2021, Zolgensma was made available on the British NHS at a price that was described as ‘fair to taxpayers’, following a confidential deal struck by NHS England.17

The more we understand the potential of new technologies such as genomics and personalized medicine, the higher these healthcare costs may become. Fantastic new possibilities are emerging as approaches such as whole genome sequencing, the increasing use of data and informatics and wearable technology move us to an era of truly personalized care. These treatments are tailored to the needs of the individual patient, but they are also mind-blowingly expensive.

The societal impact of such innovation might be profound. If we can’t afford these massively expensive drugs for everyone who needs them – and we almost certainly can’t – then how will we decide who will get them? If they end up being reserved for the rich, we will have a major ethical and political problem.

It is generally accepted that increasing social inequality is causing real problems; the mega-rich are becoming wealthier, but the trickle-down effect to everyone else’s incomes that many people predicted does not appear to have materialized. It doesn’t take much imagination to picture a world in which a tiny elite can receive these expensive drugs and consequently survive diseases that are fatal to everyone else. It is also easy to imagine the anger and unrest that would result from such inequality – history will judge us on how we make these decisions.

Even today, although we choose to fund a handful of exceptionally expensive drugs, some patients find themselves having to endure lengthy waits for painful conditions, while others receive no treatment at all. In 2018, well before the pandemic, a survey by an independent think tank revealed that 80 per cent of NHS finance directors in England believed that funding pressures had caused people in need of mental health treatment to wait longer for care.18 The problem is not simply that we need to spend more money on healthcare, at a time when every projection shows costs rising inexorably. The challenge that we are facing is particularly demanding because of the difficult practical and ethical questions that it raises. How can we decide whether it is preferable to spend healthcare funding on a single person with a rare, serious and hugely expensive condition, or 1,000 people with common and cheap but painful conditions? These are complex areas, packed with ethical dilemmas that become more important as costs escalate.

More money?

Any discussion on healthcare spending tends to trigger the usual demand that governments should simply spend more money. But while this is never sufficient on its own – at least in the long term – this is not to say that governmental budgeting has always got it right. The austerity politics of British prime minister David Cameron and his chancellor George Osborne in the wake of the global financial crisis left the National Health Service under-resourced, understaffed and woefully under-prepared for the challenges that it would face, particularly during the pandemic. However, simply ‘increasing the money’ is not a long-term solution, at least not if we don’t also address the issues of purpose, function, distribution and aspiration.

For the populations of countries that rely on individual funding or insurance for healthcare, the issue of how public money should be spent may not seem relevant. However, as their costs and insurance premiums spiral, how can they tell whether the expense is justified? Is the expensive operation that they might have been offered really the most effective solution to their problem? And who should they trust when they want to find out? After all, however affluent the country you live in, healthcare is a scarce resource, which means that it is rationed. The simple fact is that demand for healthcare is almost infinite, and funding never can be. Decisions have to be made – and the key thing is to do this rationally.

In the US, most healthcare is privately financed, and so most decisions on rationing come down to price: you get what you – or your employer – can afford to insure you for. But this also has implications for public finance. The current system of employer-financed health insurance is only able to thrive because the American government makes the premiums tax-deductible, which has been calculated to equate to a healthcare subsidy of more than $200 billion. If you are a US citizen, that’s your money being spent.

For US citizens who are without health insurance and depend on public sector care, healthcare is characterized by long waits, high patient co-payments, low salaries for doctors and limits on payments to hospitals. Some people’s care will be rationed simply because they run out of money. It is critical that every healthcare system in the world finds safe, equitable ways of distributing their resources, and many of them could be much more effective.

For instance, a 2019 report concluded that of every $4 spent on healthcare in the United States, as much as $1 may be wasted, due to a combination of administrative complexity, failures in the coordination and delivery of services, overtreatment or low-value care, pricing failure and fraud.19 William Shrank, the chief medical officer at the American health insurance company Humana and the author of the study, estimated that the total annual cost of waste in the US healthcare system was between $760 billion and $935 billion, more than the total economic output of Turkey. In that year, it was estimated that $3.82 trillion would be spent on healthcare in the United States, of which almost 25 per cent was wasted. Clarity as to the aim of all this care would make an immense difference, but it is based on activity rather than outcomes. And while eliminating waste can make a very real difference, it in no way answers the challenge of perpetually increasing costs.

In countries around the world, research is being undertaken into the concept of low-value care, typically defined as an intervention where evidence suggests it confers little or no benefit on patients, where the risk of harm exceeds the likely benefit or, more broadly, where the costs of the intervention do not provide proportional added benefits.20 Have you ever considered that such treatments might exist? Doesn’t it seem extraordinary that modern healthcare might offer treatments that carry a risk of doing more harm than good?

Observing where healthcare funding is spent can give us a clue to a country’s priorities. To generalize, modern medical science is pouring more and more money into the aggressive treatment of the seriously ill, as exemplified by the idea of ‘one more course’ of chemotherapy in people who are close to death. Is this always logical? Is this what society truly wants? If we are trying to beat death, it’s a game that we will inevitably lose. However, these are not simple questions. It is all well and good to say that we should prioritize prevention, until you or your loved one has the aggressive cancer. And your priorities may well change if it is your parent who has dementia, and their final months and years will cause your entire family a great deal of distress. We might find that what we want for ourselves is different from what we want for the whole of society. So how do we handle that?

After all, healthcare is hugely expensive. Every single action carried out by a nurse, a doctor or a therapist costs money. In countries without universal healthcare, this is a tangible cost that must be directly paid by the patient or through an insurance scheme. In the UK, we rarely think about the cost from a personal perspective – it simply isn’t on our agenda. Apart from a few exceptions, such as prescription fees, dental fees and the irritation of having to pay for parking during hospital trips, our care feels as if it is entirely free, but this is not the case. When your taxes are used to pay the bills, it is your money that is being spent.

Whether the costs are covered by individuals or the state, money is never going to be limitless – at least in non-pandemic times. And unless we take some tough decisions, it is inevitable that at some point there simply won’t be enough money to pay for all the healthcare that we want or feel that we need. Indeed, the situation is even worse than that – in what might seem a rather perverse trend, the more nations spend on healthcare, the more it costs. The 1942 Beveridge Report, which led to the establishment of the National Health Service in the UK, predicted that costs would fall as the population became healthier. It stated that a comprehensive health service would ‘diminish disease by prevention and cure’ and that costs would subsequently stabilize. In reality, of course, the reverse turned out to be the case. In the UK, health spending per head rose from £9 per annum in 1949–50 to £2,187 in 2016–17.21 Even allowing for inflation, these are astonishing figures. In 1949–50, UK health spending was 3.5 per cent of GDP; by 2016–17 it had more than doubled, to 7.3 per cent. And these are not just theoretical figures – they refer to the real spending of real money.

In 2013, the distinguished British health economist Professor John Appleby wrote: ‘If the next fifty years follow the trajectory of the past fifty, then the United Kingdom could be spending nearly one-fifth of its entire wealth on the public provision of health and social care.’22 Later in the paper he continued, ‘If healthcare spending were to grow at the rate seen over the decade since 1999–2000, however, then by the mid-2070s the NHS would be consuming close to 100 per cent of GDP. Clearly this is not a fiscally sustainable trend.’

It certainly isn’t, and this is far from just a British phenomenon. In the US, the Congressional Budget Office carried out an analysis in 2007 detailing projections of federal and national spending on healthcare over a seventy-five-year period to 2082.23 Assuming that there was no change to the historic rate of excess costs, their projections estimated that healthcare spending would take up 33.3 per cent of GDP by 2035 and 98.9 per cent by 2082. This would leave a mere 1.1 per cent of GDP to pay for defence, education, infrastructure and everything else.

Just like all predictions, however, this will turn out to be wrong. There have already been significant changes in US healthcare spending since that report was written, and future predictions will no doubt give different percentages. But the message will be the same: spending is going up. And this trend is global.

A 2018 paper in The Lancet examined global trends in spending by looking at historical health financing data for 188 countries from 1995 to 2015.24 The authors then estimated future scenarios of health spending for the next two decades. Global health spending was projected to increase from $10 trillion in 2015 to $20 trillion in 2040. If you find the idea of a trillion dollars hard to conceptualize, it is $1,000,000,000,000 (or about £786,800,000,000). The trouble with such big numbers is that they end up being almost completely meaningless. Most of us can’t help but glaze over when economists talk about these huge figures, but they represent real, spendable money, with real costs that impact on real people.

In countries where individuals are responsible for paying for their own care, the challenge of finding sufficient funds becomes more acute. An article in the New York Times