WPA Project on Partnerships for Best Practices in Working with Service Users and Carers

The WPA has invited service users and family carers to join in its work as members of a taskforce, recognizing their essential contribution to improving mental health in any country. The taskforce is preparing recommendations for the international mental health community on best practices in working with service users and carers. The project’s goals and progress are described here on behalf of the taskforce and its special advisers.

The project was established by WPA President Prof. Mario Maj to support the WPA Action Plan for the years 2008 to 2011 1,2 and one of its goals: “Support international and national programmes aiming to protect the human rights of persons with mental disorders; to promote the meaningful involvement of these persons in the planning and implementation of mental health services; to encourage the development of a person-centered practice in psychiatry and medicine; and to promote equity in the access to mental health services for persons of different age, gender, race/ethnicity, religion and socioeconomic status”.

Service users and carers up to the present day have the regular experience of stigma and discrimination in the community 3,4, poor access to care for mental and physical health problems 5, and treatment under conditions that rob them of respect and dignity 6,7. Psychiatrists join in calling for their inclusion in decisions related to treatment and rehabilitation, the development and management of services, the building of a research knowledge base, the development of policy, and the resolution of problems at any level, especially social exclusion 8,9,10. In some low-income countries, community-based organizations are collaborating with professionals to work effectively with groups of previously marginalized people (e.g., 11).

Service users and their families have an important role in advocacy in order to enhance the reputation of mental health expertise and services as well as that of people with a lived experience of mental ill health. In recent years, users and carers have been involved positively in a range of activities including advocacy for support for research, care and social inclusion, and self-help projects 12,13,14,15. The WPA has cooperated on several levels with different user and carer organizations, as with trialogic symposia at congresses and affiliated memberships, with encouraging results 16. Efforts in several countries to change community attitudes and improve mental health care have produced resolutions and guidelines (e.g., 17-19), but their wide use and the structural changes they call for are yet to be achieved.

The taskforce has defined the primary need to develop a unified approach to advocacy for mental health and human rights at country and international levels. Adequate support for mental health services and improvement of mental health in any population require a united voice. Achieving this will need support for the capacity of each group to work effectively in partnership. As service users and family carers typically lack the power to interact equally with professionals and government decision makers, assistance in developing this power is mutually important for them and for the WPA and the wider international mental health community.

A draft series of ten recommendations about the changes required begins with the declaration that respecting human rights is the basis of successful partnerships for mental health. The second recommendation is that legislation, policy and clinical practice relevant to the lives and care of people with mental disorders need to be developed in collaboration with users and carers. The series continues with a recommendation that the best clinical care of any person in acute or rehabilitation situations is done in collaboration between the user, the carers and the clinicians. Education, research and quality improvement in mental health care also require this collaboration. Other recommendations include enhancing user and carer empowerment through the development of self-help groups; participation in service planning and management boards and the activities of professional societies; employment of people with mental health disabilities in mental health service provision, user-run community centres and psychosocial clubhouses; and the creation of inclusive local anti-stigma programs. Each country will need specific guidelines to apply these recommendations.

The next step is a wide consultation and developing an advisory network to include people and organizations with needed expertise. Consultation will take place with Member Societies and other components of the WPA, with other international organizations and through a series of contacts and group discussions with grassroots people and groups.

The taskforce has three members with a background as service user (Bhargavi Davar, India; Sylvester Katontoka, Zambia; and Jan Wallcraft, UK), three with a background as family carer (Diane Froggatt, Canada; Hussain Jafri, Pakistan; and Sigrid Steffen, Austria) and six psychiatrists associated with the WPA (Michaela Amering, Austria; Julian Freidin, Australia; Helen Herrman, Australia - Chair; Solomon Rataemane, South Africa; Henrik Wahlberg, Sweden; and Richard Warner, USA). The members were appointed as individuals, although several also hold leadership positions in relevant organizations. Chris Underhill, founder and director of Basic Needs, is special adviser, as are two members of the WPA Committee on Ethics, its Chair Sam Tyano and Afzal Javed. The World Health Organization Department of Mental Health and Substance Abuse is helping by offering its experience and advice.

The WPA hopes, through the work of the taskforce, to support partnership and participatory developments worldwide, and improve learning from these experiences.