Other health agencies throughout East London are responding to the same policies and research, undertaken in 1998 by Sarah Mudd, Community Relations Manager in the Nursing, Therapies and Quality directorate, set out to discover what they were doing, what motivated people in this field, and what we can learn from their experience.

Government documents on the subject present it as a management activity. I wanted to explore whether more is implied and whether there is something subversive about greater involvement.

An examination of the literature provided two models which help explore the issues. One is the consumer' model, based on principles of access, information and redress. The other is a more 'democratic' or participatory approach which takes into account the imbalance of power between health agencies and the public. There are some strengths in an approach which sees the patient as a consumer' to be treated with as much courtesy as a business would treat its client. In addition the 'consumer' is protected by regulation and standards to ensure equal access and high quality care. The Patient's Charter enshrines this approach. However, there are shortcomings too. It tends not to question the underlying power relationships between service users and professionals or address inequalities in the wider society, such as unemployment or poor housing, which might have an impact on the delivery of care. In the public sector, the influence of 'consumer choice' is minimal as the public does not purchase services directly. Rather; the agenda is set by the service agencies who often retain control of the processes of consultation' or involvement. This contrasts with the democratic model.

Research took the form of in-depth interviews with key professionals in local trusts and Community Health Councils. Respondents were recruited by writing, in the first instance, to the Chief Executive or Chief Officer of each agency. The people interviewed included a Chief Executive, a Trust Board Chairperson, a Head of Communications, a Director of Nursing and a Head of Quality & Audit.

Like the policy on which it is based the approach of local NHS agencies did not reflect either the 'consumer' or 'democratic' model but borrowed concepts from both.

First, it is interesting to understand what was meant by 'community' and by 'involvement'. No definition wds offered by the researcher but all respondents referred to the local community, a community which suffers disproportionately from health problems compared to more affluent neighbourhoods and has poorer access to the prerequisites for health i.e adequate income, good housing, and freedom from the stress of unemployment and racism.

In defining 'involvement' most felt that statutory consultation was not adequate: "There is a difference between consulting about a service, asking if you prefer the red option or the blue option when I know the only option we can afford is the blue option." The following criteria were cited as contributing to meaningful involvement:

• allow the patients to feel they own the process;
• be honest and open;
• be clear about expectations;
• give feedback on what has been achieved;
• be characterised by dialogue;
• provide an opportunity to influence decisions;
• be based on sharing full and honest information.

It was the community organisations that reported cases of conflict such as the differences between the Patients Council and the psychiatrists in one case, or public outcry that erupted on local estate on the withdrawal of their GP surgery.  Whatever the rights and wrongs of the case to close Barts there is no doubt that there was strong public opinion in favour of retaining the historic hospital in the service of the NHS. If the public are to be invited to have a say, health agencies and policy makers must be prepared to listen to messages they do not agree with and to respect those who present a different point of view.

Government policy had influenced trusts but sensitivity, responsiveness and quality of services were cited as the main reasons for involving people. Other motivating factors included planning provision of a new service or change to an existing service.

Accountability was an important motivator and two respondents felt there was an ethical imperative to involve people. Another referred to values of care and service implying partnership; "Well I think the values are, we are a public service", and "I think it is one of the characteristics of public service management that you give account to your public."

The idea of users being arbiters of effectiveness of care was very much on the agenda for CHCs but only beginning to be discussed in trusts.

The study highlighted the number of key players involved, the complex context of rapid change, competing priorities and policy objectives. The key themes were

• representation;
• equality;
• involving staff;
• barriers to involvement;
• outcomes organisational development.

The point was made that some people speak out while others do not. "you can't expect every user to be a shouter, so I think the issue of representativeness is a red herring."  Whereas in the past certain viewpoints expressed in the community have been criticised as unrepresentative, here people were finding 'inclusion' a more useful concept and had a number of strategies for achieving greater inclusion:

• targeting particular groups such as ethnic groups and carers;
• using advocates;
• meeting the needs of users when choosing a method to invite feedback;
• outreach work;
• valuing different points of view.

There was almost universal concern to place equality and race at the heart of strategies to involve the public; the "mix of cultural issues with issues of deprivation we face (present) an amazing challenge in terms of providing decent healthcare."

Although important it is not an easy issue: "We are all struggling, at least I think we all should be struggling, because they are real issues out there in the community".  Positive attempts to tackle inequality include support for a Regional scheme encouraging more members of black and ethnic communities to put themselves forward to serve as Non-executives, a consultation on spiritual and cultural needs of the multi-faith community and advocates attending public meetings.

Employing local people is one way trusts can respond to the local community and in turn local staff help trusts provide a more responsive service. A number of trusts made a philosophical link between their approach to patient involvement and their approach to staff management - the issues being:

• respect
• democracy and empowerment
• effective two way communication
• seeing their staff as individuals who may be patients, carers or community volunteers as well as workers.

Front-line staff are close to the consumer in a way managers are not. A model being used in one trust was cross-disciplinary and vertical discussion forums, where people become used to sharing their views with others who have different work 'cultures' and work 'languages'. This approach requires that people respect different classes of expertise in the same way the expertise of the user; about their own needs, must be acknowledged and respected.

It was quite clear that, despite the level of activity that was reported, user participation was seen as a difficult thing to do. Community based organisations reported frustration at lack of response from the authorities and a certain cynicism about motives. Trusts were struggling with how to involve people, sometimes how to interest people in the things they wished to consult about. Barriers included different access to power, language (in many senses), the 'them and us' feeling, and public comprehension of the issues under debate.

Clinical disciplines are based on largely a positivist approach to knowledge and this can make clinicians deaf to evidence which is more qualitative. For the public there may be suspicion of authority, other priorities, a disenchantment with politics or lack of confidence.

People are working to overcome these barriers in a number of ways. The CHC and some community groups provide support for users groups, disseminating information, and helping to bridge the gap between professional and lay perspectives. Professionals tacilitating the process from within the NHS can be helpful. Involvement of clinicians was highly valued. "The nurses have really taken it on particularly the clinical nurse specialists see it as a way of finding out how to improve their services. The consultants are more resistant but some of them have been quite open to it." Professionals will need to adapt and learn new skills.

There were examples cited of straight forward practical changes e.g. a change to the linen supplies to ensure enough bed covers so patients could cover themselves and maintain their dignity. Yet less tangible benefits were also expected - the lay perspective, helping users have a voice, and dialogue. These qualities were seen as creating a cultural shift in organisations which effects the way professionals behave and view their contact with patients. Most important to community groups was the potential for more effective services. Patients and public need to be confident that there are benefits to them in the short term. This might be by being given a fair hearing and an opportunity to influence change. Or it might be access to information, or the benefits of mutual support provided by a patient support group.

Service users not only raise problems, they also generate solutions. It is beginning to be recognised that the voice of the community is important to the ethos and development of the organisation and, as claimed by one trust, can play a part in developing an overall strategy for the direction of the organisation. However, NHS structures which draw legitimacy from a hierarchy, have standards set centrally and where the concept of professional accountability dominates, may need to bend. Appropriate internal structures, dedicated resources and mechanisms for interagency working are essential if ideas generated through dialogues with the community are to bring about change. This infrastructure is still embryonic.

Everyone agreed it is complex and difficult but all trusts had a commitment to greater patient and public involvement.

The CHCs and voluntary sector had different perspectives to the NHS agencies. However, there appears to be sufficient respect to build stronger working relationships between the parties. Despite suspicions on both sides, where links had been made CHCs, community organisations and trusts were doing so with a common aim of extending democratic accountability not just in governance but also at the 'coal face'.

Representation and equity were seen by most as reasons to reach out to all sectors of the community, particularly black and ethnic communities, and groups such as mental health service users and those with learning difficulties.

There are common themes which could be used to evaluate our user and public involvement. There is much we can learn from one another's good practice and from work in other fields such as housing and regeneration.

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