Who Decides Who Decides?

Enabling Choice, Equity, Access, Improved Performance and Patient Guaranteed Care

John Spiers, Philip Booth, Neil Russel

• Publisher: CRC Press
• Year: 2018
• ISBN:
  9781315357362
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

This book makes the case for 'ordinary' people to get the health and social care which the state has promised them for over 60 years but which has not been delivered. What is the case for choice? How can choice be made real for the individual? What impact can genuine, individually financially-empowered choice have on effective funding, purchasing, delivery, and outcomes? How can a genuine market grow and thrive? How can the quest for choice include the large numbers of NHS and social care staff on whom success depends? The book urges individual financial empowerment, through a life-long health savings account for all NHS and social services.

1

Vignettes and visions

‘The prophets who forecast a sterile, uniform future were wrong, because they imagined a society shaped by impersonal laws of history and technology, divorced from individuality, pleasure and imagination. But economics, technology, and culture are not purely impersonal forces ruled by deterministic laws. They are dynamic, emergent processes that begin in the personal – in individual action, individual creativity, and individual desire. And, in our era, they are accelerating aesthetic discovery.’

– VIRGINIA POSTREL

‘If it seems too good to be true, it probably is.’

– ROBERT H FRANK

‘Governments, the economy, schools, everything in society, is not for the benefit of the privileged minorities. We can look after ourselves. It is for the benefit of the ordinary run of people, who are not particularly clever or interesting (unless, of course, we fall in love with one of them), not highly educated, not successful or destined for success – in fact, are nothing very special. It is for the people who, throughout history, have entered history outside their neighbourhoods as individuals only in the records of their births, marriages and deaths. Any society worth living in is one designed for them, not for the rich, the clever, the exceptional, although any society worth living in must provide room and scope for such minorities.’

– ERIC HOBSBAWM

There is one chief reason why I have written this book: to try to support the case for ‘ordinary’ people to get the health and social care in a free society which the state has promised them for over 60 years, but which has not been delivered. I offer no challenge to the idea of universal coverage. Instead, I seek to make it real, and to reinforce the British commitment to ‘fairness’. Without endorsing what has too often been a force-fed pot-pourri of exalted and coercive moral posturing, soul-saving politicised advocacy, imposed ideology, historical myth, superstition and party-political ritual.

I try to do two things: to put some answers to questions and to put some questions to answers.

That is, to try to answer some fundamental questions, and to put some critical questions to the prevailing answers.

We will not get to the right answers about choice, individual empowerment, autonomy and independence, improved services, higher quality, the necessary innovations, imagination, and productivity gains, self-directed support and structural, cultural and social change which we need until we get to the right questions. We will not get to the right questions unless we understand what counts as an answer. If we are to set targets, too, best that they be set by the individuals who use the services. If we are to reach the most promising solutions, best we rely on continuous and incremental experiment and enquiry and not presume in advance what is best for others.

I ask the reader to consider if we should care more about economics than politics. Do we care more about buyers (or service-users) than sellers (or hospital trusts and PCTs)? Do we care more about the growth of values like self-responsibility, individual respect, tolerance and pluralism? Do we believe that responsibilities – so central to a better life – most positively arise when they are undertaken voluntarily, or can they be imposed ‘from above’?

Dynamism or statism?

The crucial overall cultural choice is between dynamism and statism. The first, dynamism, is represented by individual financial empowerment and the impact of economic incentives on cultures and performance. The second, statism, is represented by existing monopoly structures such as primary care trusts (PCTs), A&E and large district general hospitals, and by the idea that the state can know our interests best and that it can run things effectively in the absence of competition and financially empowered choice.

My concern in this book is to encourage people to think again about cultures and structures from a number of different perspectives. And to argue that choice enables competition, which prompts innovation, which – as Virginia Postrel’s books illustrate in many contemporary fields – enhances productivity and lowers costs, which produces further innovations and re-combinations, which again increases productivity which generates new investment . . .

Each chapter here turns the kaleidoscope slightly. Each brings us back to the fundamental step of individual financial empowerment and self-responsibility. The pivots are economics and culture. I do not, however, offer a mass of graphs, detailed proposals with full alternative costings, and a phalanx of algebra and geometry, charts and tables. This is not my purpose here, although I hope that economists with more competence will take up the gauntlet. I do not here seek to offer the kind of detail which would satisfy the Treasury, although I trust that politicians will call for this work to be done there. Nor is the book about a ‘master-plan’, or a finished model, or an imposed hierarchical solution. It is instead concerned with a process, and one which is much more akin to the natural world of continuous evolution and interaction than the existing NHS. It is about reaching out to individual choices, and about discovery rather than political purity. We do not need to design every façade and fireplace, every window and tower, each entry and exit – nor do we need to envisage a completed building with all its embellishments. These are the temptations of visionary statism. Instead, we need a dynamist commitment to adaptive innovation.

The case for choice

‘Choice’ is seen as a catalyst, a source of energy, and of those reconnections denied by the centralised planning systems of the NHS and by its denials of basic information and of choice to consumers. The requirement for reform is, too, rather more radical audacity than is presently offered by any political party. Instead of debating and dissecting the inconsequential and rather than continuing to obfuscate the issues of real importance or deferring action on them until a later date we should now take major steps towards change. In particular, I propose that we should move towards a generational change whereby everyone invests tax funds in a health savings account (HSA), which they own and which it is in their interests to keep in good repair. This is the policy ‘meat’ of the book. We could then each add to our HSA and – when we have to use it – we should spend prudently, be aware of costs and of our choices. The wish is to reclaim healthcare from politicians, from specialists, from planners, and from all those who have appropriated our individual decision making. I apply this thinking to such immediate urgent challenges as the funding crisis in long-term elderly care, and to acute and chronic healthcare.

These principles rest on the idea, too, that private provision is inherently superior since it empowers the individual, always provided that powerful purchasing power can be placed in the hands of the poor. This is what an HSA can achieve. Thus, monopoly and tax-funded public services will be replaced by the purchasing of services provided in an open market. As a consequence, taxation itself could be reduced. Indeed, lower taxes would encourage additional personal savings in an HSA. Independence, too, rather than dependence, offers gains in personal dignity and choices, civic and political stability and economic prosperity. We know from opinion polls, too, as I will show, that people like choice. And that, notably, the lower income groups who are the most patronised and have it least want more of it.¹ Tax reductions and tax transfers will fund the HSA. Is choice to be an anthem or an evasion? An accompaniment from our early lives onwards and a vital part of the textures and verities of our thought? Or a promise which we think we have, but with no secure way to retrieve it? It is not ‘the thought that counts’, as in the old English saying. It is incentives and real instruments that can make the thought real. Do we mean it?

How can choice be made real?

There is much talk of somehow ‘making’ the NHS patient-centred or ‘personalised’. This is extraordinary. For how could it be anything other than patient-centred? Why else does it exist? ‘Personalisation’ depends on the control of money, to be able to secure the benefits of personal medicine. We must thus un-pick the meanings of phrases like ‘patient-centred care’. Is this merely a label? Or an instrument for specific change? Is it merely electoral and political obeisance to a general notion, which is then to be ‘interpreted’ by ‘experts’? Or is it to be a specific instrument for change and within the control of the individual? Unless we have clarity about language we will not be clear what we mean by ‘choice’ and those instruments which make it real.

To make sure that the patient’s view and preference is at the centre of all such work we need an awareness of the necessary devices that genuinely give people sanctions and self-direction. This, by contrast, with expansionist healthcare ‘needs analysis’, of enlarged power by the few over the many, of the ‘leadership’ of ‘experts’ who plan on our behalf and then ‘consult’ with us in the margins. The phrase ‘patient-centred care’ still looks to be in the main a ‘consultation’ project. Yet as I will show, the expansion of direct payments in social care is leading us towards the proper economic empowerment of the individual. ‘Patient-centred care’? No more evasions please. Let’s be clear about it: there can be no full patient-centred care without individual economic power. There can, too, be no cultural change without structural change.

The attempt to substitute ‘consultation’ for individual empowerment bears directly on ‘the problem of knowledge’ which I consider in several places. A major problem that arises is what is the source of the necessary knowledge on which to base decisions about what services to offer? In markets there is a daily, incremental referendum. But in public services officials try to guess preferences. They can also thereby hold tight to inefficient organisation. Thus the many complicated, costly and often frustrating consultations, in which people feel they are told that after extensive consultation officials will now act just as they always intended in the first place. However, officials inevitably struggle to gather the necessary knowledge in advance, especially when much of this knowledge is tacit and is only ever expressed by people when they become patients. I explore this significant difficulty.

What would count as tests of how successfully individual choice is in place for all?

We already know the correct conditions in which and by which choice can function effectively. International evidence shows that the essential features for choice to operate include competition; a variety of providers of services; the necessary information by which to make comparisons and on which to found choices; autonomy for providers to respond; and the impact of direct financial consequences for those who fail to do so. ‘Autonomy’ must mean the individual being financially empowered. And the best means of ensuring empowerment via appropriate purchasing and provision is to have both competing purchasers and competing providers who have to seek willing revenues. Suitable support for retraining for those working in failing providers is also helpful in retaining capacity, as well as encouraging support for cultural change. There is a need for much more information on provider comparisons, on clinical outcome data both by institution and by clinical teams. There is, increasingly, more access to experiences as reported by patients, and patient groups are an important source of outcomes as reported by patients. One development is a site – Patient Opinion – started by a Sheffield GP which offers patients’ experiences of going into hospital and invites people to comment on their care. This is one way for people to start to get answers to the question of what happens to ‘people like me’. My final chapter summarises these issues and considers ways forward.²

What impact can genuine, financially empowered choice have on effective funding, purchasing, quality delivery and outcomes?

There have been important recent changes in the atmosphere under which policy is being conducted. Most notably, policy concerning personal budgets in social care, and the support to the disabled to live fuller and self-controlled lives. Here, the extension of personal budgets in the £520 million Putting People First project announced in December 2007 and the Independent Living Strategy costing another £1.3 billion announced in March 2008 offer genuinely revolutionary – if still much underestimated – potentials for change across the entire spectrum of health and social care. The government has subsequently pledged £900,000 towards independent living, in a programme for local councils to transform their systems. The care minister Mr Ivan Lewis is helping to create 14 new Action and Learning Sites.³

Important, too, are linked initiatives like the Transition Support Programme for young disabled children. These steps towards self-directed support for all are vital, and revelatory. They are about people being enabled to escape from disempowerment [being ‘cared for’] in a system which still too often exists for itself.⁴

Simon Duffy, Chief Executive of In Control, the social enterprise company which is working with more than 107 local authorities in England in developing self-directed support for consumers, has said:

Research shows two things: first, people’s experience is broadly positive and life is seen as much better; second, there are deep institutional barriers to successful implementation of direct payments. Direct payments work but they are often hampered by wider management and funding systems.

In 2003, In Control was set up as a social enterprise to explore how to co-produce a better system for everyone who needs social care – this system was called self-directed support. In this system everyone is given a clear entitlement to support, sometimes called a personal budget. People can then decide how their budget is spent and how much control they want to take over that budget.

By early 2008 some 80,000 people were also using direct payments – the predecessor policy.⁵ These can be much more widespread, into every nook and cranny of the NHS, too. In spring 2008, 107 local authoritie...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Dedication Page
• About the author
• Acknowledgements
• Foreword by Professor Philip Booth
• Introduction: sources for courses
• 1 Vignettes and visions
• 2 Why choice? Two concepts of order
• 3 Language, and smuggled goods
• 4 The ticking clock: six policy recommendations
• 5 The seven uninvited guests: ‘markets’, ‘risk’, ‘competition’, ‘customer’, ‘profit’, ‘price’ and ‘demand’
• 6 The present reforms: ‘coherent and right’?
• 7 Compare and contrast: performance, probable or actual?
• 8 What are politicians for?
• 9 Cancer and ‘the efficiency myth’
• 10 The ‘choice agenda’ and the problem of knowledge
• 11 ‘When the axe came into the forest . . .’
• 12 Will ‘a new localism’ answer?
• 13 Will giving power back to the doctors answer?
• 14 The messages of the aesthetic environment
• 15 Between the data and the deep blue sea
• 16 ‘Coercion, contagion, learning, coaching’
• 17 Are you being personal, or what?
• 18 To see the statue in the marble
• 19 The picture in the frame
• 20 World-class commissioning? ‘Thanks, but no thanks. I think I will go round the corner’
• 21 My body, but your decision? ‘Concordat’, and shared decision making
• 22 How many fingers make five? Culture, kultur, and permission to change
• 23 Postscript: Dazzled by Darzi?
• Index