Final Report > Chapter 28: Public Involvement Through Empowerment > Principles to inform future decision-making about how to involve the public and patients in the NHS

Principles to inform future decision-making about how to involve the public and patients in the NHS

27 We should say that in drawing up these principles, we have been greatly assisted by the papers submitted for our seminars. Of particular assistance was the paper from the RCN. [13]

• Patients and the public are entitled to be involved wherever decisions are taken about care in their NHS

The contribution which patients and the public can make to the organisation and to the delivery of healthcare should be sought and valued. The NHS was created as a service to serve the public. Thus the involvement of the public in its future direction is both proper and necessary. The perspectives of patients and of the public must be heard and taken account of wherever decisions affecting healthcare are made, including by professional organisations such as the Royal Colleges.

• The involvement of patients and the public must be embedded in the structures of the NHS and permeate all aspects of healthcare in the NHS

All aspects of strategy, policy-making, and the delivery of healthcare, can benefit from the involvement of patients and the public. Thus mechanisms are needed to include them in the formal structures of organisations. Arrangements must also be made to ensure that the advice and views of patients and the public are heard. Bodies such as Patients' Forums and Patients' Councils undoubtedly have a role, but they must not become devices for ghettoising the public and patients. Thus they are not a substitute for the involvement of patients and the public in the mainstream of activity.

• Information

Without information, patients and the public will remain disempowered. It is essential that they receive and can gain access to the information they need to participate fully at whatever level their contribution is sought.

• Healthcare professionals must be involved in the process

While our concern here is to empower patients to be involved in the organisation and delivery of healthcare, we recognise the importance of striking a partnership in this endeavour with healthcare professionals. This will be of enormous lasting value in taking the process forward. Thus there must also be a recognition of the need to educate and train healthcare professionals so as to develop an understanding and appreciation of the role which patients and the public can play.

• Honesty about the scope of involvement

Some decisions can and should be made by the public. Others cannot. Between these two extremes there is scope for a wide range of public involvement. The guiding principle should always be to ensure the greatest possible involvement of the public and patients, unless there are good reasons for acting otherwise. To ensure that confidence is retained and trust not put at risk, whatever the context, the scope of involvement of the public should be identified and made explicit at the outset.

• Transparency

It is important that the processes by which patients and the public become more actively involved in the healthcare process are open to scrutiny, and are transparent in the way that they work.

• Effectiveness

The mechanisms for public involvement should be evaluated. Changes to these mechanisms and structures should draw on the evidence of what works. The NHS Modernisation Agency could play an important role here. We need to learn and understand the most effective forms of involvement in terms of helping to improve the quality of healthcare. The goal must be the widest possible involvement of patients and the public in the NHS at local level.

• Training, development and preparation

A high degree of participation from some individuals will be required. It is important, therefore, that such individuals are properly prepared and supported through, for example, the provision of training and guidance.

• Funding

To be effective the involvement of the public and patients requires proper funding. This particularly includes the provision of sufficient resources for those involved, such as payments for childcare or loss of earnings or time spent preparing for and attending meetings. The various bodies should have an appropriate budgetary allocation to meet such costs. It is on such apparently minor issues, but matters of great importance to the individuals concerned, that the involvement of the public often founders. Without financial support, many, with the best will in the world, cannot take part.

• Involving different groups

It is important that all patients and members of the public have the opportunity to become involved. But such involvement should not be limited to `patients' groups' or those representing the interests of patients with a particular illness or condition. The net must be cast widely, not least to ensure that the broad range of experience of the NHS is captured. That said, it is unlikely that, through representation alone, the full range of the public's views will be obtained. Thus it is important to encourage the use of professionally conducted surveys, at a local and national level. The surveys should be seen as part of a strategy for public empowerment.

28 It is important to mention here the particular role which primary care trusts (and groups) can play. With their power to place contracts with hospitals, primary care trusts (PCG/T) are in a strong position to exert an external influence on the quality of care. In a PCG/T of 200,000 patients and 100 GPs there will be in the order of at least one million consultations a year. PCG/Ts, therefore, should be especially vigilant to ensure that they have in place arrangements to discover and take account of patients' and the public's views. This should include seeking patients' views about the care which they have received in hospital and on matters which they consider could be improved. One mechanism for achieving this could be through the PCG/T's Patient and Advocacy Liaison Service. The views of patients can then inform the process of contracting with hospitals. Clearly, there will need to be a much greater degree of involvement and empowerment of patients and the public than simply to have a single `representative' on the PCG/T board.

29 On a separate matter, there is an argument as to whether there is a need for government to establish some body at a national level to represent the public's interest but which stands outside the organisational structure of the NHS. There is some force in the idea of some form of permanent watchdog: a national, publicly funded body to represent and promote the patient's perspective. There are, however, counter-arguments. First, by being outside the system, the scene may be set for the development of confrontational attitudes between the patients' watchdog and the NHS which serve the interests of neither. Secondly, without formal powers to challenge or change, the body may soon lose credibility and be seen as `toothless', a gesture towards public engagement rather than a reality. If, on the other hand, the body were given formal powers, it would, perhaps, endanger the creation of that partnership between professional and public which we regard as the essential building block for the future, by appearing to endorse the sovereignty of patient power. This would be to go too far. A patient-centred service is not a patient-dominated service.

30 Accordingly, we are of the view that, on balance, the priority should be that the public's interests are embedded into all the organisations and institutions concerned with quality of performance within the NHS. In this way the public is `on the inside', rather than `on the outside'. Moreover, in wider constitutional terms, it leaves the field clear to democratically elected politicians to be, as they must be, the final arbiters of the wider public interest, able to weigh both competing priorities within the NHS, and the relative claim of the NHS as against those of other sectors of public service.

Footnotes

[13] Seminar 7. The Royal College of Nursing. Position Paper