Report by the <scp>WPA</scp> Working Group on Developing Partnerships with Service Users and Family Carers (2020‐2023)
Authors: Miia Männikkö, Guadalupe Morales Cano, Martha Savage, Charlene Sunkel, Afzal Javed, Roger M.K. Ng, Michaela Amering
Journal: World Psychiatry (2024)

All 187 ratifications of the United Nations Convention on the Rights of Persons with Disabilities1 come along with legal obligations along the lines of "Nothing about us without us!", a long-standing demand of the organizations that represent hundreds of millions of persons with disabilities around the globe. In a historic first, in the early years of this century, mental health-related conditions became recognized as part of the broader disability sector and, within this context, referred to as psychosocial disabilities. This allowed for persons with mental health conditions to feature prominently in global disability-related advocacy initiatives to promote and protect human rights of all persons with disabilities. In another historic first, self-advocates were an essential part of the negotiating and drafting process of the Convention. The first human rights treaty of the 21st century was the product of a truly participatory process. No policy development, review and amendment of legislation or additions to regulations shall be undertaken without including experts in their own right, namely persons with psychosocial disabilities. The international consensus on working in partnership is in the process of turning into reality around the globe. According to the 2020 World Health Organization (WHO)'s Mental Health Atlas2, 35% of the 171 countries that responded to the survey reported ongoing formal collaboration with service users and/or family/caregiver advocacy groups. Professional psychiatric organizations have a significant role to play in creating opportunities for meaningful, authentic and sustainable involvement of persons living with a psychosocial disability in their work. At the international level, examples are the World Association of Psychosocial Rehabilitation, which includes persons with lived experience of mental health conditions and family carers as board members; the European Psychiatric Association, which includes ex-officio members of the boards of the European Federation of Associations of Families of People with Mental Illness (EUFAMI) and the Global Alliance of Mental Illness Advocacy Networks (GAMIAN); and the Collaboration Agreement between Mental Health Europe (MHE) and the European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP). At the national level, examples are the Royal Australian and New Zealand College of Psychiatrists with its Community Collaboration Committee, whose members contribute to the training, assessment and accreditation of psychiatrists, as well as to mental health policy direction and internal operations of the College; and the UK Royal College of Psychiatrists, with a family carer and a user representative as council members. Some government bodies also have persons with lived experience background on board. A prominent example is the Advisory Committee on Mental Health set up by the Hong Kong SAR Government. With the advice and support of this Committee, the Hospital Authority of Hong Kong has ensured that every mental health service cluster recruits a specified minimum number of trained peer expert workers in its mental health teams for people with serious mental health problems. Another example is the National Mental Health Commission of the Australian Government. Examples of international policy and research endeavors with partnerships are the Lancet Commission on Mental Health, Stigma and Discrimination3, which included people with lived experience background in key leadership roles; and the WHO QualityRights initiative4, which has taken multipronged actions to put people with lived experience at the centre of its global and country level work to transform policy, law and services, and to build capacity on person-centred and rights-based approaches to mental health. The Global Mental Health Peer Network has developed formal partnerships with several international organizations, including the International Initiative for Mental Health Leadership, Ember Mental Health, and Recovery IPSS. These partnerships are aligned with its "Considerations when working and engaging with persons with lived experience of mental health conditions". Rules of engagement for successful partnerships include principles of transparency and fairness, ways of finding a common language, making decisions by consensus or democratically, and moving from tokenistic participation to active and engaged partnerships5. Examples of training partnerships include the US National Association of Mental Illness (NAMI)'s in-service training for mental health professionals, provided by a team consisting of an adult with a mental health condition, a family member and a mental health professional who is also a family member or has a mental health condition; the Fundación Mundo Bipolar's trainings developed within the project RECOVER-E; and the EUFAMI's training programme "Prospect for People". For more than three decades, the Trialogue experience of learning and practicing communication on equal footing has been providing a discrete and independent acquisition and production of knowledge for people with a lived experience of mental health problems, family members and friends, as well as persons working in the mental health field6. The WPA has been working towards inclusion of service users and family carers in all aspects of mental health for many years. Its "Recommendations on Best Practices in Working with Service Users and Family Carers"7 resonate in its Madrid Declaration. The momentum was revived with the creation of the Advisory Group for Service Users and Family Carers and their work in the triennium 2017-2020. This work was continued by the Working Group on Developing Partnerships with Service Users and Family Carers, established as part of the WPA Action Plan 2020-20238-10. This Working Group has cooperated with many WPA components and has been involved in all World Congresses during the triennium, organizing symposia on a variety of topics, ranging from somatic health of persons with mental health conditions to human rights and mental health, as well as courses on alternatives to coercion in mental health care. The latter have been the outcome of a fruitful cooperation with the WPA Working Group on Implementing Alternatives to Coercion in Mental Health Care. This partnership included research, education, and co-authorship of a position and other academic papers. A cooperation was also implemented with the WPA Working Group on Volunteering11. The Working Group also organized in 2023 two WPA webinars on "There's no mental health care without human rights" and on "The why and how of successful partnerships between psychiatrists and service user and family/carer advocacy movements". Finally, the Working Group produced a Position Paper on "Developing Partnerships with Service Users and Family Carers", which was adopted by the WPA General Assembly in September 2023. This Position Paper recommends that "all international and local professional organizations, including WPA programs and member societies, find appropriate ways to work in authentic and meaningful partnerships with persons and/or organizations with personal experience of mental health conditions as well as with family and informal carers".