Patient Groups

Greater patient involvement in both their own personal health care needs and also in the development of local (Patient & Public Involvement Forums¹) and national health care provision is an essential part of the future development of effective health care services.

Patient involvement and representation is increasing rapidly at national, local and practice level. It is developing a much higher profile both in the development of health services and also, through national support groups such as Diabetes UK, in more disease-specific areas of health care provision.

Increasing patient participation is also linked to increasing the provision of information for patients, e.g. Patient Advice and Liaison Services (PALS)² and enabling patients to become much more involved in their own care (the Expert Patient programme).³

Patient participation should be seen as a very positive process but requires enthusiasm and commitment in order to achieve all the potential benefits.

Patient involvement contributes towards quality payments under the GMS 2 contract (PE 4 Patient Surveys):

• The practice will have undertaken a patient survey each year and discussed the results as a team and with either a patient group or Non-Executive Director of the Primary care organisation.
• Appropriate changes will have been proposed with some evidence that the changes have been enacted; 15 points - total for patient surveys is 70 points).

Establishing a patient group also helps:

• To develop a partnership with patients.
• To discover what a range of patients think about services and establish their priorities.
• Provides a platform to test and modify ideas and plans.

There are inevitably potential problems:

• Members of the group may have unrealistic expectations.
• They may feel uncomfortable about sharing their views or have an exaggerated focus on one particular issue.
• Care must be taken to avoid the group being unrepresentative of practice patients or becoming a complaints forum rather than a forum for expressing and sharing constructive ideas.
• The potential benefits of a patient group are substantial but the group is likely to be time-consuming so setting and running the group must be supported by everyone and so make this time well spent.

Some of the key aspects of establishing a successful patient group are:

• Involve everyone in the primary care team.
• Develop a clear plan for setting up and developing the group and also establish clear goals for the group.
• Good recruitment is essential. The right choice of facilitator and the right mix of members on the group is the most important factor in the success of the group.
• The ideas and views of patients must be treated with merit.⁴ Otherwise it will be very clear that the group is just a token gesture.
• It is up to the group meetings to modify any ideas in terms of practicality and potential benefit.
• Publicise the group, the issues discussed and the plans that have been decided.

The National Association for Patient Participation⁵ provides support for the development of Patient Participation Groups and maintains the affiliation network.