A strong EPP needs to be based upon sound values. Last summer, before the EPP report was published, LMCA carried out a consultation exercise with a small cross-representative group of members of the SMP Network. The group included representatives from NHS, self-management trainers and voluntary sector deliverers of self-management courses.

The aim of the exercise was to consider how an EPP could be mainstreamed and what its future role in the development of lay led self-management programmes should be. A paper outlining the conclusions drawn from the process were sent to the EPP officials at the Department of Health in July.

In this paper LMCA made a number of recommendations. We said it was essential that any proposed infrastructure through which the EPP would be rolled out should, as far as possible, secure the recognition and trust of all key stakeholders including patients, voluntary sector organisations, NHS and social services, health professional bodies, and health and social care professionals.

Another key message was the need for an EPP to be informed by values that enshrine individual empowerment for people with long-term conditions. These values were set out as follows:

• the people who know the most about the day-to-day problems of living with a chronic disease are people living with long-term conditions
• the people who know the most about the day-to-day problems of living with a chronic disease are people living with long-term conditions
• the integrity of the process enshrined within the generic Chronic Disease Self-Management Course and the best practice for organisations [learned from the Lill project] is fundamental and should not be lost in the rush to expand
• that programmes are empowering for people living with long-term conditions, health professionals and organisations involved in their delivery
• the programmes used are vehicles for developing self-efficacy
• the programme should be based upon a social model of health, which sees well-being as more than the absence of disease
• patients are at the centre of the programme and make up a high proportion of the representatives on bodies involved in the development and delivery of the programmes
• it should be delivered at grass roots level in the first instance by volunteer tutors [much more work is needed to explore the relative merits of paid or unpaid tutors], recruited across all social groups in the community
• all personnel directly involved in the training and management of tutors should be people living with long-term conditions who have gone through the process of delivering courses
• those who manage units that deliver training should also be trained to prepare them for the anticipated outcomes
• the programmes should be delivered by accredited organisations adhering to agreed quality standards derived from experiences of participants and tutors
• it can be expected that research bodies will want to investigate and analyse self-management, which will in turn further expand the evidence base. One immediate task is to establish the criteria by which self-management programmes will gain recognition
• evaluation of programmes should be based upon participatory evaluation methods, empowering all those involved to contribute to the future development of the EPP

The group also agreed that the present NHS structure would not easily accommodate an EPP that aspired to empower people living with long-term conditions. However, a partnership between the NHS and voluntary sector providers was feasible. The group recognised that there was much more work to be done on considering views and pulling together best practice. We therefore recommended that a comprehensive consultation process, overseen by the Department of Health, be initiated to consider the development of an infrastructure for the EPP. The remit of the consultation exercise should be to develop an infrastructure that is able to accommodate the core values of the programme, and the plurality of needs among patients, deliverers, the statutory sector, purchasers and the voluntary sector, some of which had been identified through our consultation process.

We proposed that in the meantime, organisations within the voluntary sector already carrying out the functions of a resource centre and delivering training should be provided with the resources and mandate to develop the availability of EPPs, until a national agency is in a position to take over.

Finally, we concluded that existing experience in the development of lay led self-management programmes has consistently demonstrated that good self-management programmes are characterised by a 'bottom up' process driven by patients and patient groups. This should not be lost in the implementation of the EPP and priority should be given to consideration of the ownership of programmes so that they remain vehicles for empowering people. We knew that this would be a timely process but felt that it should be the priority, rather than any political imperative to provide national coverage in the shortest time possible.

We believe this message and the recommendations we made to the Department last summer are as relevant to the process now as they were then.

For information about the Expert Patients Programme go to the 'People and Communities' section of the Department of Health website at www.ohn.gov.uk. The Expert Patient - a new approach to chronic disease management for the 21st Century may be viewed and downloaded from this site.

If you have any specific queries, contact Geoff Latham, Expert Patients Programme Co-ordinator on email: geoff.latham@doh.gsi.gov.uk

The Department of Health publishes a newsletter, EPP Update, with the latest information on The Expert Patients Programme. To obtain a copy of the current issue and be placed on the mailing list, email: profbriefings@msn.com