The organisation of health services in the UK is predicated on the passivity of patients. Our publicly funded and provider managed system had until recently concentrated on command and control, on demand management, on the restriction of choice and the restraint of supply.

This was possible because patients and the public have long accepted their role as grateful beneficiaries of a paternalistic NHS. Within recent memory, the British Medical Association was able without irony to run an advertising campaign asking patients to "Be patient". Doctors were busy doing their best, we were told, and waiting was inevitable. We believed it. We tolerated lost notes, long delays and waiting lists of a year or more because we accepted that if we had to wait it was because the NHS was busy looking after someone else.

The NHS justified this on the grounds that it was fair. I have called this the "equity of the mediocre" and it remains a strong element in the arguments of those who resist the opening up of choice in the NHS because they fear that choice and equity are incompatible. The NHS is good enough, the argument seems to be, and at least we have an equitable share in its inadequacies. This counsel of inertia ignores the fact that health inequalities continue to grow and that the rich and the well-connected have always been able to jump the queue.

The NHS Plan in 2000, the subsequent Wanless report, and a series of Department of Health papers have envisaged a patient centred NHS in which patients and citizens are actively engaged in their own health and wellbeing, and in helping to shape the quality and structure of health services through public participation and some limited forms of consumer choice. Alongside this there has been great effort put in locally in the NHS to service redesign, improved information for patients, and better patient experience, choice of provider and support for self-management and for people with long-term conditions.

That little has changed is disappointing for those of us who seek an NHS that works more effectively for the people who pay for it and use it. However, many of the mechanisms we need to bring about change are in place. What we need now is to recognise that patients really can be active partners in the system and to allow them to be so. We need to have the courage of our convictions and turn a "patient led" NHS from idea to action.

Patients must become the entrepreneurial force for change. An example of this can be found in Newham, east London. It is the most diverse borough in Britain but that very diversity is being turned into a strength by a programme called Communities of Health which starts with the reality of local communities and supports and encourages them to create their own health and wellbeing.

Concerned about diabetes in the south Asian population, Newham's NHS trusts launched a programme offering tests in public places such as markets and shopping centres. High levels of diabetes were found and the people tested were advised to urgently see their GP. There was no real increase in people seeking help. It seemed that people were powerless to act on the information they were given. Medically defined, professionally delivered public health information was not meaningful to them so they could not use the knowledge to change their behaviour.

Motivation

The trusts adopted a different approach. They went to talk to the communities; to faith groups, to housing associations, day centres, schools and workplaces. They found in those settings the motivation to improve health, and the community leaders who could do it.

Communities of Health is the converse of the usual approach: it promotes culturally specific and citizen-led action. It has clinical involvement but it is not clinically led, its strength and direction comes from the leaders of community groups.

The Expert Patients Programme (EPP) is another model of patient-led change, created in this case by and for people with long-term conditions. Supported self-management programmes such as EPP focus on personal motivation; decision making; goal setting; dealing with pain and fatigue; and getting the best out of health professionals. They can produce measurable health improvements but primarily they increase self-efficacy and thus wellbeing and quality of life. The tutors who run EPP courses are volunteers who have long-term conditions themselves and this is central to the programme's success. Tutors model behaviours that participants aspire to and demonstrate that health is achievable. They are the epitome of "do as I do", not "do as I say".

Patient-led means that the way people choose and act should shape the service. Some rudimentary tools have been provided: choice of provider, some information to help make those choices, and payment by results to provide incentives for providers. Early reports suggest choice of provider is popular and that it is working. Even if only small numbers of patients change their provider, the payment system has a significant effect.

So there are real examples of change but these are small scale - as social entrepreneurial activity often is - and they are still peripheral to the vast majority of activity in the NHS. Patient engagement, patient choice and self-management are not seen as the radical revolution they could be but as yet another intervention to be done to patients. When patient choices do start to have an impact, the instinct of the service is to resist, not to follow where patients lead.

From Canada comes a powerful example in the field of mental health. At McMaster University, in Hamilton, families with children needing mental health services were facing long waits of six months or more. During that time children's mental heath deteriorated and family stress increased. Some of the more assertive parents asked the clinicians: "What can we do to help ourselves and our children? We are wasting this waiting time." Working with the families in a systematic study of their information needs and the barriers to their effective use of information, they designed a self-managed, home-based programme providing step by step solutions for parents to use. This was backed up by a telephone helpline and coaching service. The results were dramatic. At the end of the six-month waiting time for professional help, 87% of families had solved their own problems and no longer met the referral criteria for the service. This was better than clinically based interventions where the recovery rate was 63%.

This is patients as entrepreneurs. This is why it is so important that we understand patient and public engagement not as a way of getting people to do what the NHS wants, but as a force for getting the NHS to deliver what patients and the public want. At every level we need to stop managing patient behaviours and start responding to patient choices. Choice must be matched with voice: with effective, influential consumer involvement and real community engagement. As patients and citizens, we need to seize the opportunities given to us to shape healthcare and become entrepreneurs for change.

· Harry Cayton is national director for patients and the public at the Department of Health. This article has been adapted from Healthy Democracy - The Future of Involvement in Health and Social Care. The book was co-produced by the NHS Centre for Involvement and advisory group Involve. The article in full (and the book) can be found at involve.org.uk

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