Self-management

About a quarter of people with a diagnosis of schizophrenia recover fully in time, and fully three-quarters recover to live a satisfactory life, albeit with some restrictions, and needing more or less support.

What makes the difference between those who recover in full and those who recover in part? What makes the difference between those who recover quickly and those who recover more slowly?

One factor common to many people’s recovery stories is a turning point where they make a decision to recover. A person’s determination to take steps to live their life as fully as possible, to not let their condition rule them, can make a real difference to their recovery.

Self-management is all about taking control of your life and being active in your own recovery. Thus a decision to self-manage can be a key factor contributing to a person’s recovery.

The Rethink self-management project

The Rethink Self-Management Project aims to support and facilitate people’s endeavours to take active steps towards their own recovery. It is, so far as possible within Rethink, a user-led project. It is guided by an all-user (or ex-user) Steering Group, and much of the development work has been done in partnership with a user Working Group. It aims to be faithful to the views expressed by participants in the research carried out in the first year of the project (see below).

Progress of the self-management project

The Rethink Self-Management Project was set up in 2001.

Phase 1 of the project, the research phase, was devoted to finding out more about self-management, through a review of the literature, through sharing ideas with other organizations and, most importantly, by gathering the views of people with personal experience. The results of this work can be found on the Rethink website. Phase 1 ran until late 2002.

In phase 2, the development phase, we took what we had learned in phase 1 and sought to create some practical ways to support people to self-manage. These include a self-management support group, peer support and mentoring, and a workbook for individual use. Phase 2 is ongoing as we develop our ideas from rough sketches to working projects

In phase 3, the action-research phase, we are testing the models of self-management support developed in phase 2. Through a series of evaluated pilots, in which we seek feedback from participants, we ensure that the programmes meet the needs of users. Phase 3 began in 2004 with a pilot self-management support group. This will run until June 2005, and will be followed by further pilots.

In phase 4, implementation and dissemination, we will aim to have a number of evidence-based models of self-management support which will be implemented in appropriate Rethink services and offered for external use.

The phases are not distinct. Phase 2 continues as we develop new models from sketch to working programme, even as we are (phase 3) piloting models we have already developed.

Our future plans include:

• Publication of materials to promote a self-management perspective on schizophrenia – including books, leaflets and webpages, and audio and video tape
• Piloting and evaluating a variety of models of support for self-management, including self-management groups and peer-support networks
• Creating training packages for people interested in promoting self-management, whether they are staff or service users.