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Consumer Leaders from Around the World Unite in Canada

By Daniel Fisher, M.D., Ph.D. - 10/5/2007

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What an exciting and inspiring meeting I attended in Canada. Meeting consumer leaders from six other countries, I felt the strength of a truly international movement. In our voices I feel the growing spirit of recovery that is spreading around our world as an inspiring breath of life to encourage each person in his/her journey. When we raise our voices together, there is nothing we can’t do.

International Coalition takes flight
International Coalition takes flight
From left to right: Emma de Tassanyi, Australia, Anne Beale, England, Noreen Fitzgibbon, Irish Republic, Jenny Speed, Australia, Dan Fisher, US, Susie Crooks, New Zealand, Loise Forest, Canada, Shaun MacNeil, Scotland, Karon-Anne Pasons, Canada, and Roy Brown, New Zealand

The first two days in St. Catharines, Ontario, Canada, I met with leaders of consumer groups from the following countries: New Zealand, Australia, Canada, Scotland, Irish Republic, and England. Each had important information they shared formally in presentations and discussion. But more than the information was the spirit of our connecting and feeling part of a much greater whole. A sample of the information shared showed the common themes across countries:

New Zealand: Susie Crooks and Roy Brown presented on behalf of the New Zealand National Consumer Network and Like Minds, an anti-stigma campaign. They have found that the power of personal contact is crucial in reducing stigma. They have been challenging the medical description of these problems and their remedies. They find that recovery is facilitated by 20 % clinical and 80% non-clinical supports and services. They find that understanding and listening are the most important elements of assisting in recovery. They have carried out 500 interviews of people recovering or recovered from mental illness, which revealed that mental health is the only area in our society in which medical rights supersede human rights. They have moved from protest to articulating what should happen. They are driven by hope and belief instead of by anger. They gave us each a copy of a recent documentary, “A Town Like Alice,” about the closing of one of their hospitals.

Australia: Jenny Speed, the Deputy Director of the Australia Mental Health Consumer Network (AMHCN), was the representative of the national consumer-run organization of Australia. The vision of their organization is “Nothing about us without us.” Their mission is community inclusion. Their plans for carrying out their mission are:

  • Increase the recognition and involvement of AMHCN at the state and national levels. They plan to build on already developed liaisons to government bodies to improve communication. They are developing educational opportunities to equip consumers to plan, run and evaluate mental health services.
  • Improve the communication of their message to all stakeholders.
  • Further development of state and territory branches.
  • Increase the opportunities, skills, and confidence for consumers to participate at the national, state, and local levels.
  • Outreach to people facing special barriers to inclusion, such as to aborigines, trauma survivors, and people with diverse disabilities.
  • Increase the skills of the management committee.
  • Work towards financial sustainability.

The other representative from Australia was Emma de Tassanyi, Project Manager for the Consumer and Carer Mentoring Project of the Mental Health Council of Australia. She distributed a report prepared by their group called “Not for Service,” which details the first hand experiences of MH consumers. The report calls for accountability, leadership, and investment to overcome the persistent failures of their system.

England: Anne Beales the Director of the National User Network and Director of Service User Involvement in Together was the representative from England. She said their work in England was similar to that being done by users in other countries. In England, the term “recovery” has been hijacked by the providers. Therefore, users now prefer the term “wellbeing” which includes child care, housing and employment. The Network links together 500-600 local self-help groups, each wanting to maintain as much independence as possible. The Network believes that the experience of being a user should lead the system, but they have difficulty influencing change because policies are developed in isolation by the chiefs of the health trusts.

Scotland: Shaun MacNeil, the Director of VOX, the voice of users, represented Scotland. VOX means voice, as well as being an acronym for Voices of Experience, and VOX has set about motivating users by showing that their voice can make a difference. Service users are also to be at the center of their care. New legislation has been passed in Scotland ensuring that whenever a person is at risk of being hospitalized they appear before a tribunal consisting of a psychiatrist, a lawyer, and a citizen. This tribunal helps protect the rights of the user. Not only have they developed an extensive educational program, they have also entered into an agreement with their national media not to portray people with mental illness in a negative light.

Irish Republic: Noreen Fitzgibbon, Director of the Irish Advocacy Network, IAN, represented Ireland. The main goal of IAN is to “facilitate user empowerment by supporting people to speak up and speak out and take back control of their lives.” They believe that hope, respect, dignity, choice, communication, and inclusion are vital to recovery. They provide peer advocacy training and support. They value peer advocacy because it is person centered and builds trust, increases empathy, reduces stigma, empowers the person, provides role modeling and user involvement. Courses for credit are offered through college in peer advocacy. Another remarkable achievement in Ireland has been their program to combat stigma.

Canada: The host country was represented by Connie McKnight, Director of the National Network for Mental Health (NNMH), and by NNMH Board member, Loise Forest. The NNMH is the only non-diagnosis specific, consumer-driven national MH Organization in Canada. NNMH works to promote:

  • Income security
  • Employment
  • Quality of life
  • Mental health reform
  • And to eradicate stigma

The Network has developed a supportive employment program, BUILT. It provides personal and professional skills to support people in their transition to employment. NNMH is working on an accreditation model for consumer-run organizations. They are also planning to create a curriculum for training consumers to become peer specialists.

Karon-Anne Parsons represented Consumer Health Advocacy Network Newfoundland and Labrador. The organization provides peer support and advocacy for access to resources, and helps develop policies at a federal level.

United States: Daniel Fisher was the representative of the National Coalition of MH Consumer/Survivor Organizations. The Coalition presently consists of 27 statewide consumer/survivor groups (states whose combined population is greater than 200 million people) and the three National Consumer-run Technical Assistance Centers. Organized in the last year, this newly formed group for the first time is giving consumer/survivors a national voice in the decisions made by the federal government.

The primary principles of the Coalition are:

  • Recovery is possible for everyone. To recover, we need services and supports that treat us with dignity, respect our rights, allow us to make choices, and provide assistance with our self-defined needs. This range of services must include consumer-run and -operated programs.
  • Self Determination: We need to be in control of our own lives.
  • Holistic Choices: We need choices, including a range of recovery-oriented services and supports that provide assistance with housing, education, and career development.
  • Voice: We must be centrally involved in any dialogues and decisions affecting us.
  • Personhood: We will campaign to eliminate the stigma and discrimination associated with mental illnesses.

The Coalition was able to educate legislators regarding the importance of consumer-run organizations. This resulted in continued funding being provided at a national level. The Coalition provides an opportunity for information sharing among the members, such as exchanging new approaches to recovery. The Coalition is also helping to organize statewide groups in the remaining 23 states to assist those states to be involved on a national level and to join the Coalition.

The second day in St. Catharines may have been even more valuable than the first. During that day NNMH provided the participants with a variety of opportunities for bonding and informally getting to know each other. In the morning, we were introduced to their supportive employment program. This was informative, especially meeting the participants in the program. The program has six locations throughout Canada, which are linked by video teleconferencing. Not surprisingly, the participants said that the relationships they form with the staff and the other participants made a critical difference in their returning to work. That afternoon we were shown the surrounding countryside, with some going to see Niagara Falls. From that experience, the New Zealanders named our group the Niagara Nutters. That evening we learned more of Canadian culture by seeing “Oh Canada, Eh,” a musical highlighting the multiculturalism of Canada.

It was vitally important that we had formed a strong bond of solidarity during our first two days, because, the strength and unity of that bond was needed in the ensuing three days of the conference. When we arrived in Ottawa on August 29th, we were shocked to learn that there were no venues for consumers to address the body of participants. There was only a separate consumer track for us to meet with each other. We also learned that there had been minimal participation of consumers in the planning of the conference.

The conference was clearly not organized or run in the spirit of, “nothing about us without us.” Undaunted, however, consumer leaders used the consumer track time to connect and formulate short and long-term plans for improving our involvement in this and subsequent IIMHL conferences. The short-term plan was to carve out an hour at lunch the next day to address the overall body of the conference. The long-range plan was to come up with a list of recommendations to the IIMHL for improving consumer involvement. They were as follows:

Principles of Consumer Involvement in IIMHL Conferences

  1. Resources be made available for a significant number (at least 10) consumer/survivors to participate. Participants must be connected to an organization and selected by a fair process.
  2. Resources be made available for ongoing incorporation of the voice of consumer/survivors in the strategic planning and conduct of the next conference. It is suggested that one FTE position be created, to be filled by a consumer/survivor, and that there by sufficient financial support for the level of communication needed to ensure adequate participation.
  3. The IIMHL steering committee consists of 50% consumer/survivors who will be compensated at an appropriate level and in a timely manner.
  4. Consumer/survivors be engaged to undertake evaluation of both the process and the conference.

These principles were presented at the impromptu plenary Friday August 31st along with remarks by each of eight representatives from the sponsoring countries. Unfortunately, the vast majority of attendees at our plenary were consumers. One woman who came in at the end identified herself as a family member and said she had not attended because she felt the session was only for consumers.

Despite or perhaps as a result of the exclusion we experienced at the conference, we consumer leaders are more determined than ever to unite and have our voice heard internationally. We have started a discussion forum and are laying the foundation for an international coalition of consumer groups. It truly feels that the Niagara Nutters are building a world-wide spirit of recovery and empowerment.

Dan Fisher's trip to St. Catharines was sponsored by:

SAMHSA Logo - Substance Abuse and Mental Health Services AdministrationU.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Substance Abuse and Mental Health Services Administration
Center for Mental Health Services