\u201cI don\u2019t feel like we are seen at all.\u201d<\/p>\n
That line comes from a carer, someone trying to help a loved one navigate Australia\u2019s mental health system. It sits quietly in the Productivity Commission\u2019s<\/em> recent review of the National Mental Health and Suicide Prevention Agreement<\/em>, but it hits like a stone in the gut. Not because it\u2019s rare. Because it\u2019s common.<\/p>\n The review is damning in its detail, but its deeper truth is quieter, more devastating: the people who know the system best, those who\u2019ve lived through it, are still shouting into the void. Consumers. Carers. People who\u2019ve survived suicide attempts. They were promised a seat at the table. What they got was a seat in the audience.<\/p>\n Australia\u2019s mental health policy has mastered the language of inclusion. \u201cLived experience\u201d appears in every strategy document now. But language isn\u2019t enough. And consultation is not the same as power.<\/p>\n So here\u2019s the question that matters most as governments scramble to rewrite the next agreement: A few years ago, it started to feel like something might actually change.<\/p>\n \u201cLived experience\u201d became the gold standard in mental health reform rhetoric. It was no longer enough for bureaucrats and clinicians to set policy in isolation, there was growing recognition that people who had been there<\/em> knew things the system didn\u2019t. Their insights weren\u2019t just helpful, they were essential.<\/p>\n The National Mental Health and Suicide Prevention Agreement<\/em>, signed in 2022, seemed to embrace that. It acknowledged the need to embed lived and living experience into every layer of the system. Co-design wasn\u2019t presented as an afterthought; it was supposed to be central. The Agreement promised that people who had lived through mental ill-health, suicidal distress, or the long tail of caregiving would finally be listened to, not just as stories, but as stakeholders.<\/p>\n This mirrored broader global momentum. In Aotearoa New Zealand, peer support has long been woven into public mental health services. In the UK, lived experience leadership is a formal part of some NHS Trusts\u2019 structures. Canada\u2019s Mental Health Commission has embedded lived experience into its governance. These aren\u2019t just gestures, they\u2019re shifts in who gets to shape the system.<\/p>\n Australia, on paper, was following suit.<\/p>\n But there\u2019s a catch. It\u2019s easier to say \u201cwe value your voice\u201d than it is to give up control. And if the only place people with lived experience are truly included is in the language<\/em> of reform, not the design, governance, or implementation, then we\u2019re not co-designing anything. We\u2019re just rebranding business as usual.<\/p>\n The gap between intention and impact isn\u2019t a small crack, it\u2019s a structural fault line. And according to the Commission\u2019s review, that fault line is growing wider.<\/p>\n The Productivity Commission didn\u2019t mince words. The current agreement, it concluded, was \u201cnot fit for purpose.\u201d And nowhere is that more evident than in how it handled the voices it claimed to center.<\/p>\n People with lived experience weren\u2019t just underutilized, they were barely included in any meaningful way. The agreement made sweeping promises about embedding their voices, but the review reveals how shallow that inclusion often was: last-minute consultation, limited roles in governance, no real influence over funding decisions, timelines too tight to allow for trust-building. In some cases, those invited to contribute weren\u2019t even told what happened to their input. It vanished into process.<\/p>\n Roses in the Ocean, a national lived experience organization, was blunt in its submission:<\/p>\n \u201cVery short time frames make important aspects of service development such as co-design and evaluation unviable\u2026 [this] risks reducing these commitments to tokenism.\u201d<\/p>\n The word tokenism<\/em> shows up repeatedly in the review. And for good reason. Too often, governments invite a few lived experience representatives into a room, ask for their views, and then proceed exactly as planned. It\u2019s not inclusion, it\u2019s optics.<\/p>\n This isn\u2019t just frustrating. It\u2019s a form of epistemic injustice<\/strong>, a failure to treat someone as a credible knower because of who they are. When people share hard-won wisdom about what does and doesn\u2019t work, and the system responds with polite silence or bureaucratic dilution, the damage is twofold: first, reform stalls. And second, trust erodes.<\/p>\n Consumers who spoke to the Commission described feeling disrespected, dismissed, re-traumatized. Carers said they were excluded from critical care decisions despite being responsible for 24\/7 support at home. Peer workers spoke of being hired into token roles without clear scope, support, or authority. In some places, clinicians wouldn\u2019t even acknowledge their expertise.<\/p>\n One submission described how people were \u201cconsulted,\u201d then watched their words disappear into the background noise of institutional inertia. Others talked about the emotional toll of being asked to relive traumatic experiences for the sake of a report, only to see no change at all.<\/p>\n These aren\u2019t failures of etiquette. They\u2019re failures of governance, design, and, at root, courage. Because true co-design means giving up control, sharing decision-making power, and accepting that the people closest to the problem often know things the system can\u2019t see from above.<\/p>\n Until that happens, \u201clived experience\u201d risks becoming just another line item, something to reference in strategies, but not felt in the outcomes.<\/p>\n If tokenism is the trap, co-design is the way out, but only if we\u2019re honest about what it really entails.<\/p>\n Co-design isn\u2019t a workshop with sticky notes. It\u2019s not a last-minute round of consultation. It\u2019s a process of shared ownership, where people with lived and living experience aren\u2019t just speaking into a system, they\u2019re building it alongside others, with the same authority, the same pay, the same stakes.<\/p>\n The Productivity Commission\u2019s review doesn\u2019t just name what went wrong, it offers a blueprint for doing it better. It calls for a \u201ctransparent, well-resourced process of co-design\u201d<\/strong> that centers the needs, priorities, and knowledge of consumers, carers, peer workers, and communities.<\/p>\n What would that look like in practice?<\/p>\n We\u2019ve seen glimpses of what\u2019s possible. The peer workforce, for instance, has shown enormous value, not just in service delivery, but in shifting the culture of care. When people feel seen, heard, and supported by someone who\u2019s walked a similar path, it changes the texture of help. It builds trust where there was suspicion. Connection where there was fear.<\/p>\n But peer workers can’t be expected to fix broken systems from the inside while being underpaid, isolated, or tokenized. As the review suggests, a nationally consistent scope of practice<\/strong>, clear career pathways, and clinician education are vital if peer support is to thrive, not just survive.<\/p>\n The same goes for First Nations-led models of care. Community-controlled health organizations already know how to deliver culturally safe, holistic support. But without specific schedules, dedicated funding, and decision-making authority, their wisdom gets lost in a one-size-fits-none system.<\/p>\n Ultimately, co-design isn\u2019t just about making better policy. It\u2019s about repairing trust<\/strong>. About replacing the silence of tokenism with the dialogue of collaboration. And about acknowledging that people who have lived through the hardest parts of the system often carry the clearest vision of how it needs to change.<\/p>\n It\u2019s easy to write \u201cperson-centred\u201d into a mission statement. Harder to make it real. Because person-centred care isn\u2019t just about service design or warm language in clinical settings. It\u2019s about power, who holds it, who shares it, and who is willing to let it go<\/em>.<\/p>\n What the Productivity Commission\u2019s interim review makes clear is this: despite the talk, we\u2019re still building systems about<\/em> people, not with<\/em> them. And when those people are sidelined, again, the result isn\u2019t just ineffective policy. It\u2019s disillusionment. Fatigue. Grief. For some, it’s the difference between staying engaged and giving up.<\/p>\n Reform doesn\u2019t fail because we lack reports or roadmaps. It fails when we refuse to listen, really listen, to those who have lived through the system\u2019s failures. It fails when governments say \u201cwe value your experience\u201d but then make decisions in rooms you\u2019re not invited into.<\/p>\n The next mental health agreement, if it\u2019s to mean anything, must start with this reckoning. That co-design isn\u2019t a feel-good feature, it\u2019s the foundation. That lived experience isn\u2019t supplementary, it\u2019s central. And that trust, once broken, can\u2019t be restored with more consultation papers.<\/p>\n People aren\u2019t waiting for a perfect system. They\u2019re waiting for a human one<\/em>.<\/p>\n One that knows support isn\u2019t a program, it\u2019s a relationship. That services can\u2019t be trauma-informed if the process of seeking help is itself re-traumatizing. That healing is possible, but not in a system where your voice is treated as decoration instead of direction.<\/p>\n There\u2019s still time to rewrite the next chapter. But it will take more than reform. It will take humility. And a willingness, finally, to not just include the person, but follow their lead<\/em>.<\/p>\n <\/p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]\n","protected":false},"excerpt":{"rendered":" Despite promises of co-design, people with lived experience of mental ill-health and suicide are still sidelined in Australia’s mental health reforms. The result? Tokenism, mistrust, and a system designed without the people it claims to serve.<\/p>\n","protected":false},"author":1,"featured_media":188,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"1080","footnotes":""},"categories":[94],"tags":[104,98,96,103,95,97,100,101,99,105,102],"class_list":["post-187","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-mental-health","tag-carer-perspectives","tag-co-design","tag-lived-experience","tag-mental-health-governance","tag-mental-health-policy","tag-mental-health-system-reform","tag-peer-workforce","tag-productivity-commission","tag-suicide-prevention","tag-systemic-change","tag-tokenism"],"yoast_head":"\n
What happens when nobody\u2019s really listening?<\/strong><\/p>\nThe Promise of Lived Experience<\/h2>\n
Tokenism Over Transformation<\/h2>\n
What Genuine Engagement Looks Like<\/h2>\n
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A System Can\u2019t Be Person-Centred Without the Person<\/h2>\n