The Commission Pages

4.1 The attractions and pitfalls of 'rights'

4.1.1 Our terms of reference recognise that the ultimate purpose of the NHS is to serve the public interest. There can be little doubt that there remains a strong public interest in a well-functioning comprehensive system of health care and that this public interest is a truly national(in the sense of British) one. Of course there have been recent changes in the form of government in the UK but the devolved institutions in Scotland, Wales and (probably) Northern Ireland are likely to be as committed as Westminster has ever been to a system of national health care for their peoples. So here is a subject on which - indubitably - the British people can and do still unite.

4.1.2 We welcome the various initiatives taken within the NHS to improve public involvement. In particular we applaud the attempt to engage the active citizen in decision making in the NHS_. We also recognise that the involvement of the public in decision making in the NHS is not without problems and that there are bound to be tensions in relating demand to need; in choosing between the best and the possible; in determining which local, regional and national needs should be accorded preference; and in much else besides. Nevertheless we remain convinced that an effectively accountable NHS requires a far greater public input than exists at present, to assure better decision-making that corresponds to the public's preferences and needs.

4.1.3 It is widely accepted that the NHS can be best protected as well as improved by the achievement of what outr terms of reference call 'a full and effective system of public accountability'. We need to debate the best way to bring this about.The debate is as to how best to bring this about. Tempting though individual rightsthey are as an intellectual idea, and helpful though they are in many situations, we do not believe that it is solely through the enforcement of individual rights via the courts that the public interest can best be protected. When judges are invited to determine health issues in terms of rights, they usually have before them only a single litigant who is in an adversarial relationship with his or her health authority. In such a dispute, the big picture - the wider public interest if you like - is all too easily pushed to one side. So cases may determine the individual issue before them in a just and equitable way, but they will be forced to do sno without regard to the wider issues of resource allocation and accountability that the case might also raise. The public interest can only be extremely imperfectly constructed out of a series of such cases, since as a concept ' the public interest is bigger than and transcends the aggregate of individuals interests that make up the British community. Of course, where Parliament has legislated in a particular way, individuals should be able to insist that the executive adhere to the rules laid down by Parliament. There is scope for litigation in terms of ensuring that the managers of the NHS do not act unlawfully. But we should not ask or expect the judges to use the vague language of rights to provide for us a definition of the public interest in health: that is the responsibility of the nation as a whole.

4.2 Freedom of information

4.2.1 Democratic government requires that those who vote do so on an informed basis. This requires that they have access to as much information as possible to enable them to make fully informed decisions as to how they are being governed and whom to support. This principle holds good for the running of the health service and all public services. If the service is to be truly accountable, then those to whom it is to be held to account need the basic data, analysis and policy decisions on which to judge the performance of the service.

4.2.2 Access to official information is, therefore, an integral part of good government in general and the democratic management of the health service in particular.

4.2.3 Britain's long tradition of official secrecy covering all aspects of government has begun to break down in recent years. A recent revision of official secrecy, the Official Secrets Act 1989, is reasonably tightly focused and only exceptionally enforced. The trend has been towards ever-increasing entitlement to access to official information.

4.2.4 In 1992, the Conservative Government published a code of practice which was designed to liberalise access, subject to certain exempt categories and tests to weigh the public interest in disclosure against any harm it might cause. In 1995, the NHS got its own code of practice for openness, which applied to all NHS authorities and bodies. Patients also have well-established legal rights to see their own medical records. Manually held records are available under the Access to Health Records Act 1990, and computerised records have been available under the Data Protection Act since 1987. They can also gain access to reports on themselves made by their general practitioners to insurance companies or employers under the Access to Medical Reports Act 1988.

4.2.5 The Labour Government recently published a draft Freedom of Information Bill which will put freedom of information on a statutory basis. This legislation will apply to all NHS bodies, including the new PCGs, if it goes through Parliament in its present form. However the draft Bill will diminish access to official information in a variety of ways. At central government level the public will be denied all data and information about policy-making, and, at the time of writing even background material, regardless of whether or not disclosure would cause harm. Under the Code, the Ombudsman could investigate refusals to give information and substitute his or her own judgement for that of ministers or officials. Under the Bill, the new enforcement officer will be relatively powerless to challenge refusals. NHS bodies will continue to be able to count on a variety of exemptions, including commercial confidentiality, to refuse information; they will be able to inquire into the motives of people seeking information; and they will be able to withhold information indicating that they are guilty of an offence or other misconduct. Many official bodies associated with the NHS, such as those ruling on the safety of drugs, will not be covered immediately, and perhaps not at all.

4.2.6 The Commission views the availability of information as a vital aspect of a democratic and accountable health service. Of course we accept that there must be limits on the accessibility of data. There are valid reasons why on occasion such information should not be revealed. We welcome the government's acceptance in principle of the need for a comprehensive measure on freedom of information, but we are concerned that the overall effect of the draft Bill, as set out, will dilute the gains in access to information that have already been achieved. In particular, we balk at proposals to keep secret all information dealing with government policy and to restrict the powers of the proposed information commissioner under the measureto be an advisor rather than executive protector of rights.

4.3 Improving democratic accountability: options to reform NHS structures

4.3.1 How can the NHS be made more open, accountable and responsive? There is no single answer or magic formula, but rather a series of changes in structure, conduct and ethos are required. No singleone change, on its own, will be sufficient. Changes must make sense on operational and managerial grounds. The Commission is currently debating a variety of proposals, but has not yet adopted a firm position. However, we do have a potential agenda for change, which is as follows: -

4.3.2 The first and most obvious answer is to correct the initial 'defect' in Bevan's plan and introduce election in place of selection at district health authority level and to replace governing officials at regional level with elected bodies. At local level, DHAshealth authorities could be transformed into elected bodies or governance of health could be united with social services within local authorities. At regional level, regional health authorities could be revived as elected bodies, or new elected regional authorities in England could take on responsibilities for major health service decisions, along with the Scottish Parliament and Welsh Assembly in Scotland and Wales. Howard Davis and Guy Daly, for example, in an article in Public Money and Management propose that the chairs of health authorities should be elected as "local health mayors", part of whose remit would be to ensure wider representation on primary care group boards.

4.3.3 At district level, there are arguments for and against election. DHAsHealth authorities already exist and could transmute into locally elected bodies with public access to meetings, agenda, and papers, and a right to petition the authorities on particular issues. It can be argued that this solution is preferable to adding responsibility for the local health service to local authorities, which are undergoing major changes; are under-financed; and generally poor communicators. New authorities making a new start are more likely to adopt the open and responsive ethos which is vital to their success; and the public, which treasures the NHS, may be better motivated to turn out and vote for elections to NHS bodies than they have been for local authorities.

4.3.4 The case for handing over responsibility to local authorities is that they are up-and-running as elected bodies. Adding health to their responsibilities would lead to "joined-up government" at local level. Health and social services could be properly integrated and managed in concert. The public might be better motivated to turn out and vote for local authorities which held health portfolios along with social services, education, and so on.

4.3.5 Perhaps the biggest objection to introducing further elections at local level isthat the fear of continuing low turnout. There are various reasons for this low turn-out, one of which is the first-past-the-post electoral system which tends to produce party political oligarchies on local authorities and to under-represent opposition parties. Whether health is made the responsibility of health authorities or local government, the degree of participation in elections would turn first on the electoral system chosen, and secondly, on giving the authorities a degree of autonomy sufficient to making them worth voting for.

4.3.6 The wild cards in either proposal would be the new autonomous Primary Care Trusts, PFI hospitals and other PFI financed services. In theory, they could be made responsible to the elected Dhealth aAuthorities or local authorities and their boards would not be required to be elected. They would be made democratically accountable to the elected bodies instead. In addition Primary Care Groups (PCG) are going to be dynamic creatures and do not have the same territorial base as either type of authority and patients sign on across official boundaries. Our view is that the whole idea of PCGs requires a fundamental re-think, as they could easily lead to privatised local services on the US model, and cannot readily be made accountable to local people even if they remain fully within the public service and ambit of health authorities.

4.3.7 No single reform is on its own sufficient. Other changes are necessary to create an overall structure into which the local bodies responsible for health can fit. The most pressing reform is at regional level, as so much significant decision-making and resource allocation in the NHS has to be undertaken at regional level. But the time frames for change are very complex. One way would be to re-establish regional NHS authorities as elected bodies in England alongside the Scottish Parliament and Welsh Assembly in Scotland and Wales. The most sensible answer would probably be to add health to the responsibilities of new elected English regional assemblies, but these at best will take years to establish and they may never materialise. At the very least, appointed bodies ought to be restored and should operate in public. They should contain representatives of local government from their regions, or come under the supervision of the indirectly elected regional assemblies which are supposed to add a democratic gloss to the new regional development agencies. In London, the new Greater London Authority could act as a regional health authority.

4.3.8 The NHS Executive is currently immured within the Department of Health and is impenetrable to public scrutiny. The proposed Freedom Of Information regime would distance it even further from public accountability. There is a strong case for removing it from this shell and transforming the NHS into an Executive Agency. The chief executive would then move into the public domain, as other agency chiefs have done. The strategic objectives of the NHS would have to be set out for public scrutiny and it would be possible to measure the NHS's progress in meeting them. Relations between ministers and departmental bureaucrats would also be opened up to a degree and the potential for further openness would be there. This is unlikely to be a welcome proposal from the point of view of the Department of Health, as it would "lose" an important part of its being, and a largely unseen influence over the NHS. Finally, of course, the lack of clarity which now obtains leaves ministers and mandarins with a freedom of manoeuvre which is as valuable to them as it is injurious to the public interest.

4.3.9 A robust Freedom of Information Act, framed along the lines of the original white paper published 18 months ago, is vital to good government in the NHS as elsewhere in government. The current draft bill is inadequate, notwithstanding recent concessions, and would do little to improve the quality, openness, effectiveness and accountability of the service.

4.3.10 There are a variety of executive and advisory non-departmental bodies and committees, attached to the department, which also need to be reformed. The Committee for the Safety of Medicines and the Medicines Commission, for example, take decisions on drug safety and regulation which bear upon the reputation of the NHS. These bodies operate largely behind closed doors and are not open to the public or peer group review, unlike their counterparts in the USA. It is a criminal offience to release information from these two bodies. Reform of the NHS must be accompanied by reforms to make such bodies open and accountable as well.

4.4 Improving democratic accountability - options on budgets and financial incentives Improving democratic accountability: options on budgets and financial incentives

4.4.1 The budget is the over-riding question for any system of health care, and as we have seen there is little transparency in how overall budgets are set, priorities decided upon, and how the consequent rationing decisions are made. The Commission is not convinced that the current degree of health rationing is necessary for an advanced industrialised society; especially if it means that some health care is simply unavailable, or that the NHS carries very little spare capacity in terms of beds, nurses, surgeons, operating theatres, community health services, primary care, rehabilitation etc. Small unanticipated increases in the demand for care, like winter flu, can quickly become very disruptive as a result. We will want to assess how decisions are made in a way that voters' continued support for more spending is systematically ignored.

4.4.2 Nonetheless it is clear that even if more resources were available to the NHS it could not do everything that is asked of it. Priorities have to be decided upon and health needs ranked; rationing in this sense is inevitable in that low priority health needs will clearly have less money diverted to them than high priority needs. Yet there is no clear basis for this assessment. It is not enough to say that NHS managers should simply aim to maximise the number of quality-adjusted life years (QUALYS) of their patients. There is also a budget constraint. In any case there are other objectives to be considered, such as the degree to which any health authority should try to reduce health inequality, improve the position of the worse-off or simply provide as comprehensive a system as possible in order to promote social reassurance, community and social cohesion. Above all there is meeting the government's three-year targets for the growth of health expenditure which can be interpreted as the most important priority, or at least the one health service managers will seek to meet. In short health authorities and, in future Primary Care Trusts, make explicit ethical and value judgements about the appropriate trade-offs between these various objectives that underpin their priority setting which they seek to conceal or at least withhold from public scrutiny; the public input to the debate is nil.

4.4.3 As we explored earlier, the financial calculations over capital investment are particularly opaque. The Commission welcomes the government's requirement that trusts publish detailed business plans accompanying new hospital construction financed under the private finance initiative. However, much information remains confidential, and it is close to impossible to make a judgement on the basis of published information as to what balance has been struck to achieve the financial targets, and what deductions will be made from the revenue account to finance the new servicing costs of any PFI scheme.

4.4.4 Above all the pattern of budgets and pricing constitutes a framework of economic incentives to which NHS medical and non-medical staff naturally respond but which has not been explicitly designed with that end in view. For example the internal market could only ever begin to work if trusts used the same framework of accounting upon which to base the prices they charge NHS purchasers. Although there was a general instruction to base prices on the basis of average cost, some trusts felt they could increase their workload and cash flow by pricing more competitively - at the marginal cost of any additional operation. This allowed them to win extra work at the expense of rival hospitals, but paradoxically placed both in financial jeopardy. The hospital using average cost pricing lost work and revenue, forcing it to lift its prices reflecting the reduced workload and higher average costs; while the hospital winning the extra business found that there was no support for increased investment to raise its capacity except from its revenue account. Both paradoxically moved towards bankruptcy while grossly distorting the pattern of local health care provision.

4.4.5 The examination of how such pricing, costing and budgetary incentives affect organisational behaviour is called mechanism design. Although the heart of mechanism design is to devolve decision-making as much as possible to local decision-makers who have the maximum amount of information, considerable care is then taken by economists to ensure that the mechanism's financial incentives operate to produce the kind of decision-making that is wanted. What characterises the NHS is that no such sustained attempt has ever been made. How GPs, for example, build up a nest-egg in the value of their premises which they own but which are paid for by the government, means that funds are diverted from health care to servicing the acquisition of property. A better deal may be for the government to build and own the premises itself. Nor is it clear, for example, how allocations of funding are set or how they impact upon the rigour of local decision making.

4.4.6 But what should the criteria be that underpin the NHS's mechanism design? Citizens' juries, focus groups and health panels are all possible means of uncovering the public's preferences over health priorities, but suffer from a systemic democratic deficit. The Commission wants to explore the advantages and disadvantages of each approach, and how they might impact on and interact with other structural changes we are examining such as direct democracy.

4.5 Improving democratic accountability: options on systems, watchdogs, patient rights and complaint mechanisms

4.5.1 Some form of organised independent public scrutiny of health services is plainly necessary. The proclamation in1991 that health authorities were to be regarded as 'champions of the people' was clearly absurd. How could the planners and purchasers of health care stand aside and objectively examine the effect of their plans on the users of the services, driven, as they so often have to be, by financial imperatives? health authorities under the current system have become judge, jury and prosecution of their own record.

4.5.2 The only formal check and balance at the moment is the CHC. Successive governments have looked critically at CHCs to question whether they are good value for money and to see whether the public interest in the NHS, to which the present Government has declared itself dedicated, could be better and more economically served by other mechanisms. This would be more reasonable if the NHS had other statutory watchdogs or stronger inbuilt mechanisms of accountability and redress of grievance. In their absence the CHCs, for all their weaknesses, are the only bulwark representing the consumer interest in the NHS.

4.5.3 The right approach is surely to address the CHCs' weaknesses. In Wales, for example, there is to be a period of consultation aimed at developing a "new and reinvigorated model of federated CHCs". England could and should follow suit.

4.5.4 The central issue is to make sure that CHCs have the capacity and rights to monitor and scrutinise the key local health decision-maker, which promises to be the new PCGs and PCTs. The Commission will want to explore how this might interact with the options on promoting elections or incorporating local authorities into health decision-making. One way forward might be to attach CHCs formally to local authorities with health responsibilities, or to directly elected health authorities, and to give them a formal role of reporting to authorities and the public, as well as a redress role. This would build on the existing CHC functions, so creating an effective network of local bodies with the skills and expert knowledge necessary to carry out effective scrutiny of services, identify needs, investigate complaints, etc. It would make sense to give CHCs more powers and resources and to tie their work to the Patients Charter, making them its local agents.

4.5.5 Then there are the awkward establishing arrangements for CHCs (see page 12). One proposal is that the Commission for Health Improvement (CHI), which will be a Special Health Authority, might become the establishing authority, thus getting way from the inconsistencies of the present system.

4.5.6 As for CHC membership there are arguments for and against continuing with local authority and voluntary organisation nominees. On the plus side, local authorities are the only truly democratic input into CHCs and voluntary organisations are close to local communities. On the negative side, the current process of representation tends to be unsystematic, the same organisations get represented and nominees pursue their special interests rather than the wider picture. There are also important issues over training, standardising performance, ensuring national standards and empowering ACHCEW to co-ordinate and enforce common standards. The referral process for disputed decisions is inadequate, as is the protection offered to CHC members in any judicial dispute.

4.5.7 The Commission will also debate the role of extending and entrenching patient rights. Clearly they have an important role in determining what the public interest is and in ensuring that all of us as individuals are treated fairly and equitably within the health service. Rights can take various forms: (i) legal rights to whatever is guaranteed by statute or delegated legislation; (ii) accountability rights to be consulted over treatment and to be given adequate information; (iii) consent rights to be given the chance to make an informed choice as to whether a particular treatment should be undergone: (iv) charter rights, to fair treatment in terms of waiting lists, seeing consultants etc. We will want to explore the implications of enlarging and improving rights in all these areas, and of ensuring that the current system of Independent Review panels at least conforms to the best practice in the rest of the public sector.

4.5.8 There are a number of areas in the health service where patients' rights are poor or non-existent. Since the Patient's Charter was launched in 1991 it has raised certain standards in the NHS, though sometimes at the expense of others. However, it could do more to address important issues at the heart of the health service -equality of access to health care, the scope for patient participation on the basis of informed choice and the quality of care and treatment. Many of the standards listed in the Charter are described not as rights but as expectations (i.e. standards of service, which the NHS is aiming to achieve, but which may not be met).

4.5.9 The Patients' Agenda developed by the CHCs proposed not a set of expectations but a set of rights. In addition to proposing new rights it also proposed the strengthening of some existing rights. The Agenda did not consider that patients should have to resort to law if their rights were not upheld, but suggested the establishment of an independent Health Rights Commission with statutory powers to enforce all Charter rights and standards. The Agenda suggested a number of rights in relation to access to care and treatment; health care regardless of the ability to pay; choice and information; advocacy, support and appropriate care; good quality care in matters of life and death; and confidentiality and control over personal information.