As governments, service providers, and policymakers place greater emphasis on lived experience in mental health reform, questions are emerging about how that expertise is recognised, valued, and applied in practice. While consumer and carer participation now forms part of many governance, advisory, and service design processes, the effectiveness of these initiatives ultimately depends on whether organisations treat lived experience as a source of operational insight capable of driving improvement. The broader debate extends beyond representation and inclusion to issues of accountability, service quality, and how institutions learn from the people who engage with them most directly.
Marketing has a lot to teach mental health about what consumer insight is actually for. As someone who has spent decades in marketing and strategic business communication, and who now also contributes my mental health lived experience insights to drive system change, I have come to realise that a large part of the problem with how lived experience is used in mental health systems comes down to an incorrect framing.
In other industries, consumer feedback is understood as a business asset, not a courtesy. Businesses pay for focus groups, user research and journey mapping because they understand that the people using their product know things about it that you cannot know from the inside. And because they value that insight, they build serious infrastructure around it: someone analyses the data, someone synthesises the patterns, someone is accountable for presenting findings to leadership and tracking what changed as a result.
In mental health, the expertise runs deeper. People with lived experience have often navigated a complex, fragmented system across multiple services, multiple failure points, and multiple attempts to get help. They understand what works, what doesn’t, and where things break down in ways that no clinician or administrator can fully see from where they stand. They are not simply users. They are experts. In any other industry, you would pay for that kind of consultancy.
But in mental health, consumer and carer participation is often reframed as something done FOR the consumer. It’s about empowerment and inclusion and giving voice to those who have been unheard. It is seen as a gift of generosity the organisation gives to us, rather than a service we are providing to improve their systems and services.
That reframe shifts the purpose of lived experience inclusion away from ‘this feedback improves our services’ toward ‘this process benefits the participant and is a sign of how kind and inclusive we are.’ In this framing, the organisation no longer sees itself as a learner, but as a benefactor bestowing their largesse. It is easy for uncomfortable feedback not to get escalated or acted on, because that feedback was never truly valued by leaders in the first place.
The repeated expectation that lived experience contributors work for free carries a hidden message: that we should be grateful to be listened to, rather than valued for the expertise we hold.
Consumers are thanked for their courage in sharing their story, but this is often where it stops.
In marketing, if your customer research tells you the product is not fit for purpose, or the customer service is poor, or a service failed to meet expectations, you don’t thank the focus group for their bravery and file the report. You fix the product, you train the staff, you make things better.
Mental health organisations that receive difficult lived experience feedback about services that have failed and policies that create harm need the same discipline. Receiving feedback well is an organisational capability. But it requires curiosity over certainty and a willingness to sit with discomfort and vulnerability.
There is a place for the therapeutic relationship, for individual story, for witnessing. But that place is clinical care, not institutional governance. When lived experience advisors sit on committees they are there as knowledge holders. They may share their stories in the aid of helping to improve services, but many times these stories are treated as singular and personal instead of as a representation of an experience shared by many, or the canary in the coalmine they so often are.
What would it look like to treat lived experience input the way a serious organisation treats market research? It would mean not simply filing meeting minutes but translating what is heard in advisory committees into organisational learning and system improvements. It would mean treating lived experience input as data about system gaps rather than personal testimony to be received with compassion. It would mean shifting the question from ‘how can we support this person to feel heard?’ to ‘what is this person’s experience telling us about a gap in our system, and what are we going to do about it?'”‘
Mental health support is a service-based industry. Customer feedback is a necessary part of the process.
In my years of working with mental health organisations to identify opportunities for improvement in service design, communication and support based on lived experience insight, I have found a real difference in outcomes between organisations who approach this process defensively and those who see it as an opportunity to learn and improve.
Lived experience inclusion is not a gift that organisations give to participants. It is a resource that participants bring to organisations. The sooner that distinction is made clearly in policy, practice, and how we fund this work, the better the services we will build together.
