Lived experience: the first thought, not the afterthought

LEA
3 days ago
5 min read

When people with lived experience are genuinely in the room, the conversation changes.

When we gathered recently for our annual strategy day, someone said it plainly: lived experience should be the first thought, not the afterthought. The room responded immediately, in support of the idea but some discomfort about the word. Afterthought, some felt, was too negative. Too harsh.

We sat with that for a while. And we kept coming back to the same question: if the word feels uncomfortable, what does that tell us?

What we know from more than two decades of advocacy, research and direct engagement with consumers, carers, families and kin across Australia's private mental health sector is this: People with lived experience of mental health challenges, and those who love and care for them, are still, too often, consulted after the decisions have been shaped. Invited to review what has already been drafted. Asked to validate what has already been designed. Their expertise arrives late to the table, if it arrives at all.

That is what an afterthought looks like. And naming it clearly is not pessimism. It is the first step toward changing it.

What "first thought" actually means

The shift we are calling for is not cosmetic. It is not about adding a lived experience representative to a committee that has already agreed on its terms of reference. It is not about including a consumer quote in a report that has already reached its conclusions. It is about something more fundamental: that the questions we ask in research, the frameworks we build in policy, the training we design for clinicians, the systems we construct for care. All of it begins with the question of what people with lived experience actually need, know, and can contribute.

First thought means lived experience shapes the research question, not just the discussion section. It means consumers and carers are part of designing the evaluation framework, not just participating in it. It means that when an organisation is establishing a new programme, the first call is to people who have been through that experience not to bring them in to endorse what has already been decided, but to help decide what should be built in the first place.

This is not a new idea. It is, in fact, the direction that health policy and research ethics have been moving for years. The National Health and Medical Research Council's Statement on Consumer and Community Involvement in Health and Medical Research recognises it. Co-design frameworks recognise it. The language of person-centred care recognises it. And yet the gap between what is espoused and what is practised remains wide.

Real change starts with real conversations where every voice in the room carries weight.

Why it is still hard

We understand why. Systems are not designed for this kind of involvement. Timelines are tight, budgets are constrained, and the instinct (particularly in clinical and research settings) might be to move forward with expertise that is already credentialled and familiar. Lived experience expertise is still, in many quarters, treated as anecdote rather than evidence. As something that adds texture, rather than something that drives direction.

There is also something more personal at work. For many people with lived experience, being asked to contribute after the fact, that is: to react rather than to shape, is a familiar feeling. It mirrors experiences in clinical settings, where decisions about care have been made without genuine participation. Where being the person with the diagnosis meant being the object of the conversation, not a voice within it. We know what it feels like to be the afterthought. That is precisely why we are determined to be the first thought instead.

Meaningful involvement means being part of the conversation from the beginning, not brought in to review what's already been decided.

What changes when lived experience comes first

The evidence is clear that meaningful lived experience involvement improves outcomes for the quality of research, for the relevance of services, for the experience of care. Workers in inclusive environments, where diverse perspectives genuinely shape decisions, are more innovative, more engaged, and produce better results. The same logic applies to mental health systems. When the people who have navigated those systems are part of designing them, the result is care that is more responsive, more human, and more likely to reach the people who need it most.

But beyond the evidence, there is something simpler. People with lived experience of mental health challenges, and the carers, families and kin who walk alongside them, carry knowledge that cannot be replicated anywhere else. It is knowledge built from the inside: from the waiting rooms and the discharge plans, from the 3am phone calls and the years of managing medication and side effects and hope and setbacks. That knowledge deserves to be at the centre of everything we build, not appended to it.

Our commitment

At Lived Experience Australia, this is not a slogan. It is the lens through which we approach our research, our capacity building, our advocacy and our communications. We ask it of ourselves and we ask it of the organisations and systems we work with: where does lived experience sit in this process? Is it shaping the question, or reacting to the answer?

If the word "afterthought" still feels uncomfortable, we think that discomfort is worth listening to. Not because the word is wrong but because it might be pointing at something true.

The questions worth sitting with honestly are often the ones that take a little longer to answer.

A test for organisations

If you work in mental health research, service delivery, policy or clinical practice, these questions are worth sitting with honestly:

When you began your last project, programme or policy process, at what point did lived experience enter the room? Was it at the design stage, or did it come in further down the track, perhaps at the consultation phase, the review stage, or when the work was close to complete?
Do the people with lived experience involved in your work have genuine influence over direction and outcomes or are they primarily asked to review, endorse or provide quotes for what others hav
e already built?
When lived experience contributors finish their involvement in your work, do they leave feeling that their expertise was genuinely valued and that it made a difference or do they leave feeling like the decisions had already been made?

There are no right or wrong answers. But if you answer honestly, and that answer gives you pause, that is a useful place to start. LEA exists to support organisations to bridge that gap: through training, consultancy, and access to a diverse representative panel of people with lived experience who are ready to contribute from the very beginning.

If you want to see a difference, not just in how lived experience is utilised in your organisation, but in the impacts it creates, get in touch with us admin@livedexperienceaustralia.com.au - regardless of where you are up to in your process.

PS. If you'd like access to some resources that are already available, have a look at these: