Mental Health Consumer Advocacy and Participation
As users of services, mental health consumers, their families and carers have a lot of valuable information to share on improvements that can be made to mental health services, including service planning, policy development, setting priorities, training and evaluation, and addressing quality issues in the delivery of mental health services. The process of sharing this information with health services is called participation.
Participation also refers to the process of engaging consumers, their families and carers in decision making about their own care, or that of the person they are caring for.
(Reference: NSW Government)
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What is a Mental Health Consumer?
It is important to acknowledge a person living with a mental illness, rather than labeling a person by their illness. In Australia, this has led to a preference for people living with mental illness to be called “consumers”.
A mental health consumer is someone who identifies as either living or has lived with a mental illness.
Importance of the Consumers Perspective
Consumer and carer participation in all levels of decision-making is fundamental for the improvement of mental health services and crucial to improving the lives of people with a mental illness.
The continued participation and engagement of consumers and carers in the development, implementation, delivery and evaluation of services is essential for mental health reform.
(Reference: Mental Health Australia)
What is a Mental Health Consumer Representative/Advocate?
A mental health consumer representative/advocate is someone who has taken on a specific role to provide advice on behalf of mental health consumers, with the overall aim of improving mental health services.
Mental heath consumers can become a member of committees, projects or events and takes part in decision making on behalf of consumers, usually in a volunteer capacity.
BEING is an independent, state-wide peak organisation for people with a lived experience of mental illness (consumers).
BEING works with consumers to achieve and support systemic change. BEING acts as a bridge between mental health consumers and the government.
National Mental Health Consumer & Carer Forum
NMHCCF members represent mental health consumers and carers on a large number of national bodies, including government committees and advisory groups, professional bodies and other consultative forums and events.
Members use their lived experience, understanding of the mental health system and communication skills to advocate and promote the issues and concerns of consumers and carers.
A Consumers Story
As a person with lived experience of mental health distress and recovery, I know the importance we contribute to providing the expertise required for justice and appropriate decision making that affects us and everyone.
I’ve learned self advocacy through family, friends and peers who believed in me and encouraged me to speak up for myself. Consumers, carers and others in my life who believe in me is still important. They see potential in me that I do not see myself.
I attended peer support groups and peer education courses. Through these I gained confidence, learned how to identify my needs and that it is ok to speak up express my needs.
I trained to be a peer facilitator and support worker, helping others with their advocacy to understand about mental health and wellbeing and to navigate the various systems. I also learned how to share my personal experience in a way that would be effective and not traumatise others.
I’m inspired by and learn from peers who demonstrate recovery and are active in advocacy. Having peers and mentors I can consult has built my confidence and trust in myself and others.
Advocacy roles that influence change with the systems that have traumatised me and others has empowered me to use my frustration and anger and stay involved, even when discouraged.
Everything I have said above from my consumer experience of the last 45 years equally applies to my experience as a family member (unpaid carer) trying to be supportive of my various family members who’ve experienced a variety mental distress and mental illnesses. I experience how mental health carers are very often not included, consulted and our voice marginalised.
Some of my family also have lived experience of chronic health issues, development disorders, autism spectrum and dementia at the same time as experiencing mental health distress. Some of them have been more challenged to find their own voice and have asked assistance with their advocacy due to challenges of cognition and communication.
I am attempting to use my lived experience as an example in recovery and encourage my family and others to become their own advocates as well as influence for positive changes that will benefit all Australians.
As the song says, “We’re all in this together…” (Ben Lee)