Yes it's personal

Lived experience advocate Grace Curtis reflects

The Mental Health and Wellbeing Commission Road Map Launch

Lived experience equals expertise

 I want to acknowledge the immense effort that has gone into both this Roadmap and the System Performance Report. Both provide a clear assessment of where we are and a hopeful vision of where to next. I’d like to acknowledge the Minister for Mental Health, Matt Doocey. Minister, I’ve seen firsthand for several years now, his commitment to improving mental health outcomes for Kiwis. I hope he can take encouragement from what this Roadmap shows us: progress is happening. With his leadership, the collaboration of the cross-party mental health group and a sector willing to work together, we are out there doing it! 

The Roadmap highlights real gains. 

This doesn’t happen by accident. It’s good old-fashioned mahi. So, a wholehearted thanks to everyone working across the mental health ecosystem. It’s because of you, we are closer to the progress we all want to see and feel. 

While the Roadmap celebrates progress, it rightly highlights areas for improvement, such as the need for sustained and equitable resourcing for Kaupapa Māori services for tāngata, whairoa and whānau. It also reminds us that we must prioritise our young people. And fast.

The real power of lived experience leadership

Some years ago, I said. “If you want to get good at rugby, you don’t ask a soccer player how to do it.” The point I made then is very simple and it is relevant now more than ever. If we want a mental health system that is comprehensive, coordinated and genuinely responsive to people’s needs, then lived experience can’t be an afterthought, it must be imbedded in how we design and deliver services. And more importantly, assess whether those services are actually working.

Lived experience isn’t just about providing stories as a nice to have. Anyone who shares their personal story isn’t doing it for gratification, I can assure you. It’s because they endured gruelling months or even years of being let down by a system, although well-intentioned, ultimately ineffective. 

 They identified a problem, and they believe it can be fixed for someone else. Lived experience equals expertise. It equals insights, it equals tangible outcomes. This is echoed in conversations all around the world.

 Losing Dad

 For those of you who don’t know my story, I was 22 years old when I found my Dad after he had taken his life. I miss him every day. That moment changed the course of my life forever. I have spent nearly my entire 20s navigating grief, depression, anxiety and PTSD.

What does this look like for me?

Sometimes I isolate. Sometimes I fill my diary to the brim, so I don’t have to be alone with my thoughts. Sometimes I need to talk. Sometimes I don’t. Sometimes medication helps. Sometimes, I find myself researching a systematic issue until 2 in the morning, desperate to seek solutions. Sometimes, it’s manageable and I’m thriving. Sometimes, it’s not, and I’m not. The point is, there is so much variation in my own experience. I am just one person. 

Identifying solutions

My story is not unique, but my needs may be. That’s where the opportunity lies. The secret sauce is not simply listening to lived experience as a token gesture, or a box ticking exercise. But as genuine partners in shaping the future of mental health and wellbeing.

 This is the social investment and evidence-based approach we should be taking. The youth aren’t waiting for us to decide whether they’re worthy of a seat at the table. They’re out there living, going through challenges. Right now. Whānau have the answers about what services they can access, how they access them, and whether it would be more beneficial for them to have access to something else instead. They’re who we want and need at the table. 

 I feel very humbled that I have personally had the opportunity to work with organisations and decision makers over the years. But there are hundreds, if not thousands of people out there whose insights and solutions that should be valued. Now is the time, we bring them into the process. From start, to finish, and as an ongoing relationship. That way, maybe we can spend less time stuck in the scrum, and more time scoring tries.