Claiming Your Human Rights
Real experiences. Real Strategies. Real Change.
"After years of being unheard despite my obvious suffering, I had nine people listening to me because of the initial belief of one incredible doctor. She saved me. Or rather, she gave me space to breathe while I gathered the strength to continue fighting for myself."
Survey respondent, 2026
You have the right to be listened to. The right to be treated with dignity. The right to be involved in decisions about your own care. These rights exist in policy and legislation. What has been less well documented is what it actually takes to exercise them, and what makes the difference when the system pushes back.
That is what this report is about.
Between February and March 2026, 186 consumers, carers, families, and kin shared their experiences of asserting their rights within Australia's mental health system. What emerged from their responses is a clear picture of what worked, what helped, and what changed when the right conditions were in place. This is their knowledge, documented and shared so that others can draw on it.
Who shared their story
Key themes from the survey
Not being listened to
The single most reported experience was feeling dismissed, talked over
and being treated as irrelevant in their own care
Inadequate or inappropriate care
Misdiagnosis, coercive practices, lack of trauma-informed care, and treatment that retraumatised rather than helped.
The power of having support
When a support person, peer worker or advocate was present,
the quality of care often changed, sometimes dramatically.
Barriers to accessing services
Long waits, financial cost, geographic isolation, and complex
fragmented systems blocking people from getting help.
Privacy, dignity & respect
Long waits, financial cost, geographic isolation, and complex
fragmented systems blocking people from getting help.
Self advocacy & knowledge
System knowledge and communication skills helped the outcome,
but many in a crisis couldn't access that capacity.
"It is easy to forget that you have rights when the doctors/health service is positioned as being the expert in your care. But this discounts that you are the only one who knows your life to the extent that you do. You have tremendous insight and a right to make this known and to be listened to."
Survey Respondent
1 in 5 people who had pushed for their rights
had never experienced a good outcome.
Their voices need to be heard.
What the community told us worked
These strategies came from people who had, despite real barriers, found a way through.
The report documents both what worked and what they were working against, because understanding one requires understanding the other.
The respondents who described positive outcomes were consistent about what made the difference. These are not abstract recommendations. They are strategies drawn from real situations, often hard-won.
Having someone in the room with you.
Simply having a support person present, whether a family member, friend, or peer worker, changed how clinicians responded. Respondents described being taken more seriously, treated more humanely, and achieving outcomes that had been impossible alone. One person described pushing to have their therapist join by video link for all their community mental health meetings. The team resisted. They persisted. Once the therapist was present, the experience of those meetings changed entirely.
"Being an advocate for another person has always made it easier for a good outcome. Simply being present changes the outcome for the better. It holds clinicians to more person-centred treatment."
Putting it in writing.
Lodging formal complaints and writing down needs in calm, clear, factual language created accountability that verbal requests hadn't. Several respondents described how written communication opened doors that had been closed for months or years.
Waiting, then speaking clearly.
Waiting until the moment of acute distress had passed, then communicating needs directly and calmly, was consistently more effective than responding in the moment. This required timing and self-knowledge that not everyone has access to in a crisis. The respondents who used this strategy were clear about that.
Finding an advocate.
Those who accessed independent advocates, including formal advocacy services and, in some cases, lawyers, reported outcomes that differed dramatically from those who navigated alone. One respondent employed a lawyer who attended the hospital and began asking questions. They were immediately released. The lesson they drew: whether your rights are heard can depend entirely on whether you have access to someone who can advocate alongside you.
Preparing before a crisis.
Two respondents described creating an About Me document while they were well: diagnosis, treatment preferences, medications they would and would not accept, and emergency contacts. When they arrived at a service in crisis, the information clinicians needed was already there. They did not have to find the words for it under pressure.
"Finally accessing the help I needed, after my constant pushing for access. It took years to get the help I needed but I was the factor in accomplishing that. If I had left it up to services to help, I'm not sure I'd be here."
- Survey respondent
What needs to change
The strategies in this report work for some, and are useful to consider whether they might be suitable for you. They also should not be necessary. The burden of claiming rights ought not to fall on people already in distress, already navigating a system not designed with their knowledge and experience in mind.
Lived Experience Australia is calling on the federal government to enact a national Human Rights Act with genuine legal protections for people in mental health settings, fund independent advocacy at service entry points, create peer-led navigator roles in community mental health, and fund culturally safe services for First Nations peoples, LGBTIQA+, CALD, and disability communities.
Service providers need to embed trauma-informed, person-centred practice everywhere, not only in the services that have already committed to it. People should be told their rights proactively and in plain language at every point of contact. Shared care plans should mean that a person's history and preferences travel with them, so they are not starting from scratch with each new clinician.
Training and resources need to include plain-language rights guides, self-advocacy toolkits with real usable templates, peer education programmes co-designed with lived experience, and carer-specific resources that acknowledge the distinct and often invisible labour of caring.
Major Report Recommendations
Government
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Enact a national Human Rights Act with legal protections
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Fund independent advocacy services at service entry points
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Create peer-led navigator roles in community mental health
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Fund culturally safe services for First Nations, LGBTIQA+, CALD and disability communities
-
Embed trauma-informed, person centred practice everywhere
-
Proactively tell people their rights at every point of contact
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Use shared care plans so people don’t retell their story endlessly
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Meaningfully include families and carers in care planning
Service Providers
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Create plain-language rights guides for every service contact
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Develop self-advocacy toolkits with templates
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Co-design peer education programs with lived experience
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Support carers with specific resources on their own rights and roles
Training & Resources
Realising human rights requires more than individual courage.
It requires a system designed to uphold them from the outset.
Get the Full Picture
Claiming Your Human Rights: Lived experiences of navigating mental health services in Australia documents what 186 people told us, in their own words, about asserting their rights within the mental health system. It is co-designed by people with direct lived and living experience of human rights breaches in mental health settings. The same people whose rights are impacted shaped this research from the beginning. Lived experience is the first thought, not the afterthought.
The project was supported by B-HART and the Department of Health, Disability and Ageing through the Information, Linkages and Capacity Building Program.
Kaine, C., Anderson, L., Boucher, L., Cockle, J., Gleeson, A., Meadows, E., Moore, M., Read, B., Reed, S., Zhang, A., & Lawn, S. (2026). Claiming Your Human Rights. Lived Experience Australia Ltd: Oaklands Park, South Australia.