This short essay describes how to face some of the fears raised about the application of personalisation within the NHS.
Author: Simon Duffy
Personal Health Budget is the name for the use of individual budgets within the NHS. They are a recent innovation and they are causing a great deal of concern and fear. This short essay explores some of the ethical issues raised by the use of Personal Health Budgets.
Many of the fears and concerns that people have about applying self-direction to the field of health care are rooted in a right and proper concern that the values of the NHS must be protected. Moreover anyone promoting change to an established system has to make a special effort to protect those elements of it which do work and need protecting during any process of change. So we will try to identify the main fears that people feel, explore how reasonable those fears are and identify strategies for minimising any real risks. We will end by reflecting upon what these changes mean for the NHS as a whole in the broader context of the citizen’s contract with the welfare state.
However, before beginning, it is important to remember that ideas like Personal Health Budgets or even wider concepts like self-direction will not apply to all aspects of health care. In fact quite the opposite, it is very likely that many forms of health care treatments will continue to be quite properly controlled by professionals. Moreover in some areas of health care, for example transplant surgery, we have developed very specific rationing principles which are not being considered here at all. Here we are simply considering whether the application of self-direction in some parts of the NHS can be made compatible with the principles of the NHS.
One of the things we value about the NHS is that it is ‘free at the point of delivery’ and to introduce money, perhaps in the form of an individual budget, may seem hostile to this principle. For it draws the individual into a commercial exchange, first with the NHS itself and then with whoever provides the relevant services.
However it is very important to distinguish two distinct values tucked inside the ‘free at the point of delivery’ formula. The first principle is that we value the NHS because it offers provides the same level of care to everyone, without any regard to the ‘means’ of the citizen - in other words the NHS is fair. However the second value is that the NHS allows us to not have to worry about money at all - that is the NHS is non-commercial (at least at the interface with the citizen).
However we should note that being fair and being non-commercial are not the same thing and we can see this if we look at other aspects of our own welfare state. For example, it is a positive feature of our income security system that we offer people money rather than food vouchers or food. We prefer a system which is both more dignified and which gives people the maximum degree of control and discretion over meeting their essential needs.
This is not an argument for making all of the welfare state commercial, far from it. Instead it points us to the real issue which is that we need to understand when it is helpful to offer people money, which people can use flexibly to meet their needs, and when is it better to provide some service. There is no simple answer to this question, but the experience of extending self-directed support into adult social care has certainly seemed to show enormous benefits for giving people control where previously there was no mechanism that allowed control. Learning more about when and where the introduction of financial information into decision-making is one of the areas that needs more research.
One of the most interesting fears that is commonly expressed is that being clear about what people are will receive in a budget involves making explicit that health-care rationing is real. Interestingly this fear is commonly expressed by policy-makers - it is rarely expressed by citizens, for the simple reason that most citizens already understand that the NHS is a rationed system.
This fear is also interesting because actually policy-makers have been trying to be more explicit about rationing in the NHS for some years now. In fact one of the driving forces behind the development of the National Institute for Clinical Excellence (NICE) was to find a way of making much more objective decisions about what the NHS should fund and what it should not fund.
This then is a fear that probably needs to be faced head on and resolved, not by ignoring it or by down-playing the reality of the rationing process, but by focusing on identifying the objective principles by which rationing decisions are made. This is the role of the Resource Allocation System - the set of rules by which a fair allocation is agreed. It has been one of the interesting features of the reforms in social care that the development of these systems has been seen by some as the key to increasing equity in what is otherwise a rather opaque system.
A connected fear is that the existence of a clear personal health budget makes it all too easy for people to add to that budget from their personal resources. Again it is important to understand that this fear is driven by an important principle which is that the NHS will not give people more care than it deems is fair for all. It does not allow people to buy extra health care or ‘top-up’ from their personal resources - this is another aspect of how the NHS tries to be fair.
Of course the NHS only takes this idea so far. We do not stop people from purchasing private health care, nor from supplementing their care with private resources. In fact it is not uncommon for a GP to recommend private physiotherapists who may be able to treat problems more swiftly than state physiotherapists. In other words even when we cannot top-up our care we can supplement it.
In practice there are at least two different approaches that can be taken to manage the risk that personal health budgets do not open up the risk of greater inequity through the use of top-ups:
1. Ensure personal health budgets are sufficient to meet needs - The best way of guaranteeing equity is to ensure that the budgets meet the necessary minimum level to ensure that people can get the support that they need. If people are guaranteed all they need then the fact that some people spend more than they need to on health care does not undermine equity. This again reinforces the importance of the Resource Allocation System in establishing the level of care that is fair.
2. Ban the topping-up of personal health budgets - Individual budgets are Conditional Resource Entitlements and it is not unreasonable that some restrictions are placed on how money is used. However it should be noted that this approach will add cost and complexity and suffers from the same ambiguity as current policy which bans ‘top-ups’ but cannot bring itself to ban ‘supplements’.
A similar fear is that any system which allows self-direction to some degree or other will open up the possibility of a new kind of inequity - those who are smarter at using the system will get significantly better outcomes than those who are less smart. Of course it is always possible to claim that this is a flaw in the current system - the more able are already better at getting what they need from the NHS - but that current inequity does not excuse the inevitably greater inequity that must arise when self-direction gives people more power, control and, so experience teaches us, better outcomes.
This is one of the most important risks for us to consider, however it is possible to address this risk, particularly if the system is prepared to actually address the root cause of the inequity more directly. One way to think about this is to distinguish two needs: (a) the need for health care and (b) the ability to manage the meeting of that need effectively. If two people have the same need for health care but a different ability to manage how they meet that need then those two people actually need different responses, and these might include:
The research in adult social care does not give us enough empirical data to suggest that any one of these approaches is obviously correct. In fact it may better to see this as an area that will need on-going attention, innovation and research. This means that a permissive approach to this meeting challenge will provide the best opportunity for on-going learning and improvement. In fact it could be argued that increasing the level of self-direction in the NHS may also be the means by which the NHS might begin to see equity as an important and dynamic goal for the NHS rather than as something that can be guaranteed merely as a side-effect of the administrative process by which it is funded and structured.
Underlying all of these other fears is perhaps one larger but more subtle fear. As a community we welcomed the creation of the NHS as part of the state’s commitment to achieve a fairer society. The NHS has freed us from a situation where the poor lacked access to basic medical care, where people could be bankrupted by illness or where people lived with the gnawing fear that they might not be able to afford treatment for themselves or those they love. The NHS stands as a powerful symbol of this important promise from the state to the citizen - the ‘welfare promise’: we will take care of you. This means that we will tend to see anything that threatens to weaken the control that state has over society as also a threat to the ability of the state to live up to its own promise. We want a powerful state to give us the security we need.
Yet there is a problem here, for we know very well that much of what we need can only be met, or can be best met, when we ourselves take responsibility for achieving it. We cannot be ‘given’ a good life, we must live it ourselves. This then creates what we might call the welfare paradox: if we seek to meet our needs by giving up control to others then we can find that we are no longer able to meet our needs effectively. Our needs may still be met, but those will be defined by those who have to meet them - and this may not be good or right.
But there is a much more positive way of responding to this fear, instead of regretting the inherent limitations of the state’s welfare promise we could try and identify how the relationship between the citizen and the state might be put on a better footing. One helpful model might be to think about the welfare state, not as a benign and paternalistic state-run service, but as the constitutional foundation by which we live together.
If, instead, we think of ourselves as citizens, each with our own lives to live, and each subject to all the needs that human beings face then would we not want to ensure that each of us could be confident that they will always be guaranteed a basic level of security:
In effect these are the elements, not of a promise, but of a contract we could make to each other (for the state is in effect simply the guarantor of our own promises to each other). We might even go further and try to give these rights a constitutional status. And if we were able to do this, to rethink the welfare promise as a constitutional framework then the possibility of self-direction would not be a threat to our welfare but would be a gift. Seeing ourselves as citizens who produce welfare, not just for ourselves, but for others, could be the means for resolving the welfare paradox.
These are, of course, much bigger ideas than can be fully tested out in our early experiments with self-direction in health care. However it will be important to ensure that, as we find ways to help people achieve greater control over some parts of their health care, we do not slip into a seeing the state or the NHS as part of the problem. Instead we need to be able to see how the NHS can see these changes as a positive evolution in how it works and how it lives up to the fundamental principles upon which it is based.
The publisher is The Centre for Welfare Reform.
NHS Values & Personalisation © Simon Duffy 2011.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
health & healthcare, politics, social care, Article
