Patients, Power and Responsibility

Going Beyond the Forum

Presentation by Professor John Spiers, University of Glamorgan, to Socialist Health Association, 19 November 2003.

1. Common ground?

My first assumption is that we all want the same thing.

That we have a shared commitment, concern and objective to ensure that the poor, the weak, the disadvantaged do much better than they have done under the NHS structure we have inherited. That the system is always fair. That it ensures equal access and opportunity. That it is open to all. And that it is both inherently stable but also offers the opportunities of evolution by trial and error and new thinking.

I assume that we all want to live in a society in which no-one is denied good health and social care. A society in which every life is valued, and in which everyone is free to live their own life and to make their own decisions and assess the consequences. A system in which positive incentives encourage effort and quality outcomes. And with the certain and reliable re-assurance offered by a legally enforceable core guarantee of prompt access to quality care for all – what I call it Patient Guaranteed Care. This care must be better than is commonly experienced.

2. Funding, Empowerment and Self-responsibility. An alternative structure.

I am especially interested in how to empower the user of services, whilst maintaining social solidarity, equity, and fairness. I am much interested, too, in how to encourage personal responsibility. And how to ensure that sensitive purchasing buys the differentiated services that people say they want and that providers could then deliver them.

We need empowerment at the level of strategy, and at the level of individual control over our lives.

It is a key point that all health and all social care is by its fundamental nature, by its very definition, uniquely personal, separable, intimate, and timely. It concerns individual judgements and individual benefits. And many of the quality measures are necessarily subjective – which option do you prefer, and could live with? My decision is likely to be different. How do we empower each view?

We hear a lot about decentralisation. Putting patients first I believe means giving the individual direct control over funds. Not getting funds closer to patients. Having the patient with hands on the funds.

I suggest that it is change in purchasing which will have the most radical consequences.

3. Two ways to chose: voting, and money.

At least now some effort is being made to consult. Can it work? With what effects? And what else might we try to do?

There are two chief ways for consumers to express preferences: by voting and/or consultations, which is political too. Or by spending. As voters, in elections, or as consumers, when holding money as an NHS credit. This does not mean the current Tory health passport, which gives the middle-class more opportunities. I oppose that.

Which works best?

As actions voting and/or consulting and spending are very different in kind. The first – voting, or even political activism – is very indirect. The second, committing funds, is very direct. The first is diffuse, the second specific. The first is disconnected from direct results. The second very directly connected. I suggest that the political approach is disempowering to the individual. Votes, and minorities, are submerged within majorities. The second, controlling funds, empowers individuals both separately, and in concert when they organise in mutual, co-operative purchasing. This, I suggest, empowers the personal voice without detracting from social solidarity.

There is here a big choice to be made about the relationship of politics and economics.

My argument in a sentence is that it is insufficient to adjust political power – a little bit more, a little bit less locally, or to one group rather than another, one discipline from another, more on Alzheimer’s less on back-pain – whilst retaining economic power in these reshaped but essentially bureaucratic and official hands.

Shifting political power into local in-trays – decentralising to local government, or community bodies, or managers helped by patient involvement advisory bodies, PALS and the rest of the quangos and forums – I suggest merely moves a centralising mentality into local hands. It cannot genuinely empower the individual – either the staff member or the service user.

It is a geographical, but not a cultural change. Or, at least, it is not a sufficient change to really create empowered choices. It does not achieve the essential, which is to offset political power by economic power. The individual does not control the funds. The approach ultimately relies on an expert definition of the wants of individuals, which is a contradiction in terms.

Having decisions made for you, after consultation however sensitised, does not truly change the process nor the nature of decision-making, whether or not the policy becomes a more approximate guess from above than it has been until now. Local managers, meanwhile, will go on being accountable to the centre, rather than to the service-user.

And there will remain no direct incentives to respond to consumers, who cannot make costed personal choices, aside from political instructions from above.

It may be possible to gauge demand. It may be possible to fairly allocate scarce resources between demands – between a cancer drug which saves lives or more dialysis. It may be possible to do these things without consumers empowered to make their own choices, which are costed. Cleverer people than me, or of the great majority of economists, may know how it may be possible to handle unlimited demand without a price mechanism. Administrative substitutes for the essential signals of an evolving system. User councils, patient representatives, juries, lay visitors, patient forums may do this. They may. Or they may instead be symptoms themselves of the lack of user control.

Sainsbury’s, or my local health club, does not have a customer jury or a council representing me at the check-out. The accumulated decisions of free individuals do that job. Penguin Books does not demand my ‘involvement’, my time in planning, my collaboration in rationing services. They offer instead a service with a choice. And standards go on rising. Successful providers increase investment and they innovate. Prices fall. New options appear. Innovations are rapidly diffused. Surpluses are reinvested, and benefits spread.

The NHS solution is more activism. As I understand the plans staff will run events “about getting [patient’s] involved and the skills needs to do this.” Thus consultation succeeds previous failures in advocacy, citizen’s juries, political restructuring, local government health scrutiny, patient’s surveys, needs-led commissioning, and health authorities as champions of the people. This is a relentless architecture of anything but. That is anything but money in the hands of the individual. This confetti of advisory and executive bodies, regulatory participation, targets, guidelines, internal markets, has all been concerned with managing scarcity. This inevitably will gather some invaluable information from consumers. But they have no sanction over its use.

And some patients urging the reallocation of scarce resources takes away from others. It is a bidding process. It beggars my neighbour. It excludes those not organised in this way. Relatively few are involved. It is action within the system. And it prompts me to ask is the system interested in the empowered patient, or the informed and trained user, who will see things from management’s point of view?

It is our “needs” (in a frame defined and usually determined by ‘experts’, rather than our wants (which we decide, and where we make our own necessary trade-offs) which are to be “delivered”.

There will be more involvement of the individual as ‘citizens’ in the decision-making process and in local consultation exercises, but not as individuals seeking necessarily timely and separable service.

Helping to configure services is different from being enabled to command a specific service.

Every Patient’s Forum will receive the support it needs – and I quote the Guidance issued by the DoH for the Commission for Patient and Public Involvement in Health – “against a set of agreed standards the Commission itself will set” Agreed by whom? Set for whom? Changeable by whom?

Every Patient’s Forum will nominate one of their number for appointment to a Trust Board. Some 600 new voices. The UK population approaches 60 million.

My ownership of the NHS – I have one sixty-millionth and am compulsorily paid up – does not give me control over my own fate.

The consequences of the struggle to make the NHS more patient focussed reveal the contradictions. They reveal but cannot resolve or really decide the issues. Gorbachev found a similar problem in trying to reform the USSR. The rigid system was all of a piece. It could not adjust to the kinds of alternatives which are before the NHS now. That is, adjust to radically different ideas about the role of “the expert” who decides for us; to the idea of the potential competence of the empowered individual organised in a co-operative; to an evolving and flexible system. It cannot, I suggest, not work out what this would mean in terms of specific devices for change, over and beyond involvement and consultation. It could offer the symbols of reality, but not reality itself.

The test, I suggest of all the proposed and current changes is this: will the ultimate contracting party be the individual, who is free to enter or not enter into any particular exchange, so that all transactions are voluntary, self-responsible, price and cost-conscious?

Meanwhile, you and all managers remain answerable to Ministers, not to consumers. The complaints you rightly have about meddling and politically-driven targets also restrict consumer choices.

I suggest that to reform a huge, diverse, institution like the NHS demands huge, driving, even enraged, energy from literally hundreds of thousands of people, many of whom – present company excepted, of course – remain reluctant to change, and who at present have no incentive to do so.

If we try an alternative way to look at the problems I suggest we gain access to a powerful body of theory and analysis which can help us to understand the nature of the challenges and the likely solutions. Supply-side shifts without radical demand-side change shuts out this possibility.

4. An alternative structure, empowering the individual.

My proposals are that:

1. To achieve patient empowerment and individual self-responsibility (for own care; for consequences of behaviour; for choice) every patient will be given control over a personal fund of cash, in voucher-form.

2. Every adult will become a Patient Fund Holder, with this tax-based credit to pay for health care.

3. Government will set out a ‘core’ package of care which this will pay for: Patient Guaranteed Care.

4. This core package will be legally enforceable – unlike the existing system where patients have no legal leverage to ensure timely and appropriate access.

5. Every adult will buy compulsory social insurance for health and social care with their individual fund: Patient Guaranteed Social Care Insurance .

6. They will take the insurance to a Patient Guaranteed Care Association – a competing, mutual, co-operative purchaser of care, organised regionally and nationally, and led by healthcare professionals. This will cover the core package.

7. Every patient will have a bi-annual check-up – with direct financial incentives prompting people to consider consequences, and to take seriously exercise, non-smoking, reduced alcohol & drug consumption and substance abuse.

8. Government’s activist role will be to ensure incentives, choice and competition, works.

A similar approach works in the rest of Europe. I suggest this is an if and only if situation. That you will get neither patient’s put first nor greater plurality of provision without having individual financial empowerment. The mobility of individual funding is essential. For money talks and preference walks. More – it uniquely empowers not only the informed activist. It routinely and reliably empowers the silent, the uninvolved, the unorganised, the non-activist, the individual who just wants to get on with living but who wants a good service when and where it becomes necessary. And who then wants to reliably command a service. If the individual Patient Fund Holder joins a mutual co-operative purchaser they will get all the individual and specific benefits of collective purchasing.

The key is to hand power back to the individual.

This is not asking for experts to run our lives, and in our interests. It is asking us to learn to choose for ourselves, and thus to escape from a situation in the NHS where one size fits nobody.

Direct empowerment is the way to a system treating everyone the same, and thus to genuine social solidarity and to fairness, which is the test that British people put to all reform proposals.

It is also important to release very significant new funding into the NHS.

Each of us would have a bi-annual medical, with direct incentives to take our own care seriously. Such an approach can impact on individual responsibility, where we are in such difficulties – on obesity, substance abuse, smoking, alcohol abuse, exercise, life-style. It could also offer incentives for not consuming care irresponsibly, with each of us agreeing a personal health plan and some achievable targets. With real incentives that relate directly to our personal values. Thus, if you are a tennis fan and you hit the target, free Wimbledon Finals tickets on Ladies’ Day. Or tickets to The Arsenal at the Centre of World Football. Or rock tickets. Or free health club membership. This would work better than putting leaflets into surgeries amongst old copies of Punch saying “Eat More Apples.” And we know that doesn’t work.

One of the keys to health is in our own hands: the way we each live our lives. This is necessarily the subject of personal responsibility. We need to examine how direct incentives can be encouraged and supported. The costs of not doing this are very considerable. As Derek Wanless showed in his 2002 report, Securing Our Future, a high-level of individual engagement could deliver savings of up to £30 billion by 2020 – or half of the existing NHS budget. This excludes other big gains that can be made from doing better to curb waste and fraud. For each £100 spent on encouraging self-care some £150 of benefits could be returned. Between 60% and 85% of healthcare costs are now associated with people with chronic conditions – many of them entirely preventable. Co-ordination and integration of care services is another necessary but too often undelivered element. We have recently seen the contrast between the NHS and the Kaiser Permanente approach which John Reid has himself stressed. There they get more, for less spent.

In addition, we know from research from economists like Robert Evans that a sense of self-worth, of control over one’s life, of being able to shape and express personal preferences – and of being individually financially-empowered to do so – is a crucial element in individual well-being.

All this assumes that what we are interested in is making progress not towards a particular, certain, uniform and politicised destination, but towards many diverse, culturally and ethnically-varied, personally determined goals. In a real sense ‘progress’ is the product of all these parallel but individual searches for better outcomes. We want both the extension of knowledge, and the gradual improvement of people’s lives.

But choice is still denied to large numbers. Instead, a Patient Guaranteed Care Association, as a mutual and co-operative purchaser, would insist on quality; access, timeliness, responsiveness, diversity, time for the patient, time with the doctor discussion of performance and outcome, cost controls, choices, explicit prices. They will be owned by and accountable to their subscribing members.

These organisations, too, will free us from class-based privilege and politicised ‘consultation – which favours the organised, middle-class, vested interest without addressing or solving the magnitude of the challenge of discovering knowledge from 60 million minds. Of course, these processes do gather some valuable information, but they cannot capture the complexities of knowledge dispersed throughout society. Much more certainly, too, the poor will be empowered through tax transfers, bringing them into an effective market as if they were middle-class players, with full access to advice from the PGCA.

The PGCA will be headed by expert clinical and managerial leadership, and purchase a negotiated package of the core services and other niche opportunities on behalf of voluntary members. These will be local, regional, voluntary proprietary communities. And their success, and the value of their assets, will be directly tied to consumer support.

This is to urge the recovery of mutuality, of voluntary co-operation, of self-association in institutions that stand between the state and the individual. Each will offer an appropriate bundle of services – the core package and others -in an experimental, adaptive process where each will discover the most wanted mix of services necessary to retain voluntary membership and maintain a competitive advantage. Unlike existing NHS institutions – hospitals, Primary Care Trusts, &c. each will be subject to processes of competitive entry through which the most appropriate services and systems will be discovered. The financial survival of each will be directly tied to their success in achieving this. Over every shoulder will be the possibility of another organiser offering differing arrangements at different prices to attract voluntary membership. The whole will facilitate market-exchange in the community, through a community, and between communities. Overall, the incentive for all parties will be to amplify the benefits both of competition and co-operation.

5. The problem of ‘knowledge’, or how to solve problems of investment?

Much of this debate concerns the serious problem of ‘knowledge’. Where choice is denied the argument is usually based on the notion that ‘decision makers’ can have all the relevant information about individuals, their values, life-styles, preferences concerning treatments, practitioners, side-effects, outcomes and what they can and would prefer to live with. They make our decisions for us.

But who can know what about whom, when and how? And can the expert gather this knowledge? Even the individual may not know what they want, or can know what they want before they are placed in a situation of having an illness which needs action. Most of us do not consider policy issues in isolation. So-called experts assume they can know this knowledge, that they can somehow gather it in advance, and that policy can somehow capture and express this meaningfully and aggregate it into actions. Others suggest that only the individual can know themselves, and this often only when a crisis in one’s life arises. So, empowerment is complex. And consultations may be ignored by most, and on a rational basis.

I suggest that you cannot discover by politics what individual services individual people prefer, for the nature of knowledge is such that it is so dispersed (and, intrinsically tacit) that it is impossible to know individual preferences in advance and how each person will respond when faced with scarcity, price, risk, and alternatives – which they express when relating to relative prices, examining what they are prepared to pay for, and how to allocate resources. We all do this every day in every other area of our lives.

Much of the most important information is tacit, within the individual, and often unexpressed until disease sets in. This information is beyond the reach or capacity of ‘experts’ seeking to formulate policy in the name of ‘public welfare’. The centralised system – allegedly ‘scientific’ and ‘objective’ but in fact much influenced by vested interests and the interests of planners themselves as a professional group – thus wrestles with this ‘problem of knowledge’. But competitive, pluralist markets succeed in the co-ordination of services and support the necessary context for their evolution. They allow too for different people to be motivated by different incentives, and at different times of their lives. No one incentive will work for all, or necessarily for any one individual at all times. And in the present NHS negative incentives focus professionals on politicised targets, short-term decisions and political benefits, and vested interests.

So the NHS planner struggles to discover many things. Who wants what? How are we to discover this? What is to be produced? And which levels of price and quality? How much differentiation? With which features, standard and optional? Accessed, how? Who is to get what? When? Who decides, and how? Who makes the rules? Who audits who? Who will want what, and how will they view it, at some time in the future? We see in every shop in every day of our lives – indeed, in every area of our lives bar ‘public services’ and state monopolies – that direct incentives answer these questions. They do so by gathering and distributing information. They prompt conscious action by staff and management based upon the news this gives to them, the consumer, and their actual and potential competitors. When a consumer makes a choice in the market-place the incentives are to get good information before making a purchase, for the consequences will be borne by the individual concerned.

All these conscious actions arise from otherwise deliberate individual and un-random actions which merge into a whole which is not itself consciously directed or forecast, and which, indeed health care planners have found it impossible to replicate. This is information which even the individual may not have discerned from themselves. For example, few think what they would do about their hip until they are told that the pain they experience at 80 years of age may be helped by a hip replacement. Or what would each of us do if diagnosed with a cancer?

Planners simply do not have any way to gather the information or to encapsulate it into ‘policy’ which will co-ordinate what the market does unconsciously.

And the emulative behaviour which arises when improvements emerge is itself a crucial part of the value. New investments and ideas create not only new opportunities but new knowledge itself – and focus an individual’s values, and on their own knowledge and expectations. Competitive, pluralist markets focus individual behaviour and preference. The successful are emulated. This often happens unexpectedly. No-one designed the Internet, or the existing mix of modern computer products. The price-system is, too, the mechanism by which relative decisions are made, and by means of which the dispersed information is focussed. This itself is a necessarily relative decision. It is applicable to healthcare, where ‘government failure’ is both inevitable and endemic, given the true nature of the problem of knowledge. If we want providers to respond to consumers, if we want consumers to be self-responsible, if we want to free up the relationship between mandatory and optional extra funding, we need to rely on pluralist, disciplined markets.

6. Stasism or dynamism. Two ways to look at life.

Overall, I suggest that what is at stake in these debates is two different ways of thinking about life.

First, dynamism – or the spontaneous order in a self-organisation and self-coordinating “system” (or approach) which arises from the adaptive market. Its evolution is the consequence of many individual decisions which create complex consequences. It is not necessary for each contributor to be part of a politicised consultative process. They just make their own wishes known, and the dynamist pattern emerges. This solves the ‘informational problem’ (which government/planners/’experts’ otherwise cannot do) and generates constant feedback and adjustment by bringing buyers and suppliers together at agreed prices, levels of quality, and availability. This is not chaotic – and no one wants to live amidst chaos. The spontaneity, or adaptive evolution, of competitive markets, indeed, can and does and has achieved much more in both volume and value than we can otherwise attain. The order that arises from competitive markets is neither chaotic nor need it be threatening, although we must ask why so and explain the case to those who fear change.

The co-ordination and the opportunity that spontaneous order offer is not otherwise attainable. Darwinian evolution is the essence of the economy everywhere and on every day. Paul Samuelson, one of the most famous 20th century economist, made the point clearly: “[There is] convincing proof that a competitive system of markets and prices…is not a system of chaos and anarchy. There is in it a certain order and orderliness. It Works. It functions. Without [centralised] intelligence. It solves some of the most complex problems imaginable, involving thousands of unknown variables and relations. Nobody designed it. Like Topsy, it just growed.”

We can and should show, too, that any ‘market failure’ is self-correcting, rapidly corrected, and adaptive – unlike ‘government failure’ which is often very slow or even politically impossible to correct.

Second, stasism – or central control, hierarchy, allocative (and artificially imposed) scarcity and state monopoly in funding, purchasing and provision. This is the approach which the new patient forums exist to help manage.

But, instead, the whole drift of modern society is towards more consumer control. With this should, I suggest, come more individual self-responsibility. To make this work responsibly and well we need direct incentives to encourage change – by consumers themselves, by purchasers, and by providers. This can turn a patient-centred NHS into a realisable policy. It can separate political and managerial decision-making, which is essential for staff and for patients.

7. Direct payments which work already

When he was Secretary of State, Alan Milburn – whose resignation I personally much regret – spoke of modernising the NHS to create a “twenty-first century, consumer-focussed service”. It was to be a personalised service”, with greater choice for consumers.

Alan Milburn did many different things in response to this analysis. Notably, he both set in train the involvement initiatives we are discussing – the idea of patients being given “a greater say” – and he expanded direct payments and individual control over budgets in social services.

The revolution in eye care in every High Street, and the empowerment of the individual makes the same point. It is an open question which approach empowers the individual more. I tend towards the latter, which already works for the disabled. It is an approach which can bring revolution by increments. We should expand direct payments. And much of the potential to accomplish optimal healthcare, I suggest, comes from new capacity and the potential of non-governmental bodies evolving to meet consumer wishes, with consumer’s having adequate autonomy, more self-responsibility and the capacity to utilise freedoms.

By contrast the forum approach is an interpretive system. It has all the traditional and known difficulties of class, voice, communication skills, assumptions and expectations of decibel planning.

We see around us many alternatives to consumer-control, in a regulated market which can deliver fully integrated health and social care.

These all offer more politics, more political activism, more reliance on politicians. They do not offer us more reliance on individual self-responsibility. They offer what Noel Coward called “The delights of equal independence. State controlled.”

We live much of our lives locally. Our community is where our life is rooted – and power should be decentralised. But there is a key fault line here which we should recognise. Decentralisation without individual financial clout in the hands of consumers will not sufficiently advance choice. And moving from centralisation to local government would merely move central powers and mentalities into a local postal district. It would be a change of location, rather than one of nature. It entirely lacks the imperative that must be placed on competing providers, with consumers in charge of their own destiny. This is not Burke’s “small platoon” empowered. It is the regimen of the large regiment moved to the local barracks.

8. Moral choices

The arguments are fundamentally moral, rather than merely instrumental. However, we know that many people react to innovation with anxiety and resistance. This may be the case still for alternatives to the present forum approach to care and demand.

Frank J.Sulloway has pointed out that even today Darwin’s theory of evolution, however compelling the evidence, is still resisted. Anomalies are often only ever recognised long after the fact. We find it easier to assimilate anomalous new facts into existing cognitive structures, than to accommodate these structures to anomalous findings. It took more than a century for Copernicus’s claim that the Earth revolves around the sun to be accepted. Alfred Wegener’s theory of continental drift was not accepted for 50 years. Paradigm shifts are very difficult to accomplish. Thomas Kuhn’s The Structure of Scientific Revolution tells us that strongly held beliefs can preclude the observation of the most obvious of phenomena. Debate is made more difficult because opposing sides usually offer one moral universe in which only their moral concepts apply.

Reading detective novels tells you this. Commisario Brunetti notes in Donna Leon’s recent novel Wilful Behaviour: “I’m afraid it costs people too much to abandon what they believe…If you give your loyalty and, I suppose, your love to ideas like that then it’s impossible to admit what madness they are.”

Ideas, once established, have the longevity of myth. Few old dogs learn new paradigms. Psychological defences can be stouter than castle walls. We may, indeed, need to rely instead on generational change. As Planck remarked, “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”

For an author, all this concerns influencing the conjectures of the reader, to open up their receptivity to new ideas, to move people from what Michel Foucault calls “the stark impossibility of thinking that” to another system of thought. This is not an easy task, for there is an intransigence of imagination even now. And especially so as people who believe in central controls characteristically defend this in terms of superior expertise and the greater good. These are anti-democratic affirmations that they would be shocked to see deployed by others for other purposes. But they do so to justify cultural power used for political purposes.

Of course, there will always those like one of the Dukes of Cambridge, who said on his retirement from the Army after a career in which he had opposed all reforms: “Gentlemen, there have been great changes in my time, great changes. But I can say this. Every change has been made at the right time, and the right time is when you cannot help it.”

And, as Lionel Trilling noted, “It is often true that the success of a social or cultural enterprise compromises the virtues that claimed our loyalty in its heroic, hopeless beginning but there is a kind of vulgarity in the easy assumption that this is so always and necessarily.” Trilling quotes D.H.Lawrence, too, on the importance of learning from experience: “The world doesn’t fear a new idea. It can pigeonhole any idea. But it can’t pigeonhole a new experience.” And it is the experience of empowered choice which will gradually build a new world – fostered by the generational changes of the electronic information age – and the denial of it in health care. I think the changes I seek are coming fast. We shall soon see.

copyright John Spiers 2003.