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Professional Reference articles are designed for health professionals to use. They are written by UK doctors and based on research evidence, UK and European Guidelines. You may find one of our health articles more useful.

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Greater patient involvement in personal healthcare needs and also in the development of local and national healthcare provision is an important part of the future development of effective healthcare services.

The Expert Patient Programme was established in 2002 to enable patients with chronic conditions to become more involved in their own care[1].

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

Healthwatch England's first annual report has called for a fundamental change to put the user at the heart of the service. It sets out a list of eight consumer rights that the public should expect[2]:

  • The right to essential services.
  • The right to access.
  • The right to a safe, dignified and good-quality service.
  • The right to information and education.
  • The right to choose.
  • The right to be listened to.
  • The right to be involved.
  • The right to live in a healthy environment.

See also separate Expert Patients and Patient Satisfaction - Assessing and Achieving, and Monitoring the NHS articles.

From April 2016, it has been a contractual requirement for all English practices to form a patient participation group (PPG) during the year ahead and to make reasonable efforts for this to be representative of the practice population. Establishing such a group helps:

  • To develop a partnership with patients.
  • To discover what a range of patients think about services and to establish their priorities.
  • To provide 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, making 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 establishing clear goals for the group.
  • Good recruitment - this is essential. The right choice of facilitator and the right mix of members in the group are the most important factors in the success of the group.
  • The ideas and views of patients must be treated with merit. 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.
  • The importance of publicising the group, the issues discussed and the plans that have been decided.

Further advice is available from links in the 'Further reading & references' section at the end of this article.

The National Association for Patient Participation (NAPP) provides support for the development of patient participation groups in primary care and maintains the affiliation network.

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Further reading and references

  1. Self Management UK

  2. Wise J; Watchdog advises patients to fight for their rights. BMJ. 2013 Oct 10347:f6147. doi: 10.1136/bmj.f6147.

  3. National Association for Patient Participation (NAPP)