The mental health consumer movement is a global movement that has developed out of 1970’s and 1980’s women’s, disability and gay rights movements in an effort to campaign against the ‘insane’ mental health system of the time. While the Consumer movement has had many titles (such as the user movement, the survivor movement, the mad pride movement, the psyche survivor movement as well as the service and ex-patient (C/S/X) movements), consumer leadership has sprung up in recent times to encompass many concepts such as consumer ‘participation’ and advocacy. The mental health consumer movement is the collective ‘consumer voice’ aimed at empowering the people who access mental health services.
Who is a Mental Health Consumer?
A mental health consumer is a person with the lived experience of mental illness. One has the lived experience if they:
- Live with or are in the process of recovering from a mental health issue, emotional distress or a mental illness.
- Have a diagnosis of a psychiatric condition or mental health illness.
- Take a form of psychiatric medication.
- Are on the disability pension for a mental illness, psychiatric condition or psychosocial disability.
- Use or acquire mental health programs, services and products for direct consumption or ownership.
- Have, or have been, voluntarily or involuntarily residing in a psychiatric hospital or a community mental health housing facility.
- Are participating, or have participated, in mental health research.
- Come to mental health events or activities in the community.
What is the Mental Health Consumer Movement?
Following the deinstitutionalisation of mental health patients in the 1960’s and 1970’s, mental health consumer advocacy began in the 1980’s in Australia due to a need to advocate for the awareness, protection and understanding of mental health consumers.
Today, the mental health consumer movement includes:
- Consumer-led groups, organisations and activities. For more information, please click here.
- Consumer participation in the governance, planning, implementation, evaluation and development of the programs and services that affect their lives. For more information, please click here.
- Consumer rights activism, representation and leadership. For more information, please click here.
- Campaigns that acknowledge and promote the ‘consumer voice.’
- The development of peer support networks. For information, please click here.
- Building and supporting a paid consumer workforce. For more information, please click here.
- Consumer-run education and training.
- Peer-led and co-production research and evaluation. For more information, please click here.
- Mechanisms that promote consumer engagement, involvement and collaboration.
- Consumer-led systematic advocacy that promotes issues related to mental health consumers (such as social justice, stigma and discrimination).
- Online consumer resources and information.
The Importance of the 'Consumer Voice'
Consumer and carer participation in all levels of decision-making is key for the development of mental health services, and ultimately improving the lives of people with a mental illness. The consumer voice is the views, perspectives, attitudes and interests of consumers and their support network. The consumer voice provides a means for consumers to share their lived experiences with others and communicate their needs, priorities, issues and concerns. The consumer voice can be heard through involvement on committees as well as particular methods in which information is often accessed in the first person such as:
- Case studies
- Focus groups and interviews
- Dialogue, discussion and debate in consumer-led forums
- Complaints and grievance mechanisms
The Difference Between Support Groups and Networks
A support group is a small group of people who meet regularly to discuss personal experiences, problems and strategies for coping with being a mental health consumer. Some support groups meet online however a number of groups meet in the Nepean Blue Mountains region.
A consumer representative is a consumer who exchanges information and advocates for changes to the services that influence the consumers they care about. A consumer representative supports, runs projects and addresses systematic issues on a committee. Such consumer groups meet regularly to discuss and exchange information about what it is like to be a consumer, make long-term changes to services and the mental health system at large and represent the needs and concerns of the consumers they represent.
Consumer participation is the process of being involved in society and the decisions that affect a person’s life. It is voluntary or paid participation by consumers. It means working with and alongside people, not just working for them. It is about learning, working, being actively engaged and having a voice in the community. This implies sharing information, opinion and decision making power through joint problem solving, decision making and responsibility.
Consumer participation activities include consumers participating in:
- Treatment, care and treatment plans
- Decision making bodies and management structures (such as boards, committees and consultation forums)
- Influencing the design, policy, planning, delivery and evaluation of programs and services
- Individual and systematic advocacy
- Staff development and training (including the development of clinical, middle management and executive level staff)
- Mental health research (including peer-led research)
- Dialogue, debate and discussion
- Social media, blogs and online forums
- Promotion and advertisement of programs and services
- Information provision, newsletters, websites and e-news
- Complaints, grievance procedures and other feedback mechanisms (such as end of stay reviews, suggestion boxes, spot surveys, opinion polls, satisfaction surveys, feedback forms)
- Community literacy, anti-stigma and media campaigns
- Staff recruitment
- Community consultations (including focus groups, questionnaires and interviews)
- Community and public meetings (including working groups)
- Support groups
- The activities and events of the local community
Participation is a fundamental democratic right with a strong and vibrant democracy relying on the active participation of its citizens. As participation is one of the guiding principles of the Universal Declaration of Human Rights, people with the lived experience of mental health have a right to participate in all spheres of life and at all levels of society.
The Consumer Workforce
The mental health consumer and carer workforce comprises those consumers and carers who are employed specifically for their expertise developed from their lived experience of mental illness. As a consumer or a carer this may include:
- Consumer consultants
- Consumer advocates
- Peer support workers
- Consumer representatives
- Consumer educators
- Consumer academics
- Wellbeing coaches