Involving Users and Carers

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

The main goal of the project is to prepare guidelines for best practices in working with users and carers, for the international mental health community.

The project relates to the WPA Action Plan 2008, goal 7.2: ‘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 assessment and development of these person's talents, strengths and aspirations; and to promote equity in the access to mental health services for persons of different age, gender, race/ethnicity, religion and socioeconomic status.’

WHO is assisting WPA in this project by making available its experience and access to its network of users and carers.

WPA invites you to send comments and suggestions.

Current situation

During the last years a number of countries like USA, UK, Ireland, Australia, New Zealand, and Canada have embraced recovery-orientation as a guiding principle of their mental health policy. Key to this development is a partnership approach between mental health experts and users of mental health services and their families and friends.

Additional benefits and greater effectiveness of mental health care and promotion are expected from a participatory approach. With Thornicroft & Tansella (2005), it can be asserted that current and former service users can make essential contributions to all nine core principles of community mental health work: autonomy, continuity, effectiveness, accessibility, comprehensiveness, equity, accountability, co-ordination, efficiency; and to mental health research.

Service users and their families also play a crucial role in lobbying 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 and
  • to reduce
    • stigma and discrimination of mental health experts and services as well as people with a lived experience of mental ill health;
    • inequity and marginalisation of mental health within health care and promotion.

Recent years have yielded experiences with the involvement of user and carers in:

  • planning, implementing, and evaluating services
  • research
  • teaching
  • fighting stigma and discrimination
  • lobbying for support for research, care, rehabilitation and social inclusion.

WPA has cooperated on several levels with different user and carer organisations (e.g. trialogic symposia at Congresses, affiliated memberships) with rather encouraging results.

Goals

WPA wants to:

  • support partnership and participatory developments worldwide
  • learn from the experiences and opportunities of user and carer activities and from partnership  in the development of mental health services and mental health promotion
  • jointly promote a comprehensive understanding of the prerequisites of mental health and how to support the best possible quality of life for people with experience of mental illnesses and their families and friends.   

Plans

The work will begin with:

  1. Description of best practice in working with users and carers across the WPA regions and the benefits this has for Member Societies, e.g. some Member Societies have found that working in partnership significantly strengthens the position and standing in negotiations with governments and the community.  It is also an essential quality assurance strategy in helping ensure that services provided by psychiatrists and within the broader mental health community are best suited to the needs of consumers and their families.

    It will continue with:

  2. The development of and consultation on recommendations for participation of users and carers in service development and treatment that can be put on the WPA website and translated into different languages. These recommendations may include:
    1. Development of educational materials on human rights, civil rights, patient rights with regard to medical and psychosocial treatment, and disability status and anti-discrimination laws.
    2. Suggestions for creating a knowledge and evidence base, and an assessment of skills and training needs, for user, carer and citizen involvement in different parts and cultures of the world and in different areas of psychiatry and public mental health (e.g. severe mental illness, recovery, prevention and mental health promotion) including  calculation of possible impact and costs of e.g. consultations, collaborations, partnerships, in countries from low to high income; analyses and dissemination of best practice examples; obstacle analyses; identifying possible partner organizations and initiatives.
    3. Suggestion for a thematic track for WPA Congress in Buenos Aires 2011 (and other WPA Congresses and Conferences) of trialogic contributions towards topics of specific interest to all parties concerned, e.g. children of people with psychiatric disorders; mental health parity; mutual help traditions and efforts in different cultures and their role in high, middle and low income countries; and structural discrimination.

A WPA Task Force of 12 people from a number of world regions is chaired by Professor Helen Herrman (WPA Secretary for Publications).  Three members of the Task Force have a background as ‘service user’, three as carers and six are psychiatrists with a background of work with WPA.  We will next appoint an Advisory Board to the project, to include people and organisations with needed expertise.

The work plan consists of 5 steps:

  1. Gathering existing practice examples or guidelines referring to working with users and carers in clinical work, development of self-help groups, peer support and advocacy; and involvement in policy, planning, service provision and evaluation, and research.  We will seek the help of WPA zonal representatives, users and carers, and other organisations from around the globe
  2. Analyse material and consult experts inside and outside the Task Force and WPA and WHO
  3. Develop draft WPA guidelines
  4. Consultation widely about the draft and finalise it by end 2010
  5. Dissemination.