Not just a seat at the table

I joined Side by Side because I wanted my lived experience to actually go somewhere, rather than just sit with me.

My connection to health services is long term and personal. I’ve spent years navigating mental health support, both for myself and alongside people close to me. Over time, I became really aware that decisions about research and services are often made without fully understanding what it feels like on the receiving end. I didn’t want to just complain about that, I wanted to help change it.

Side by Side felt different from the start. It didn’t feel like a tick box exercise or a “we’ve consulted patients, job done” situation. It felt like a space where lived experience genuinely mattered and where people like me were invited to work alongside clinicians and researchers, not underneath them.

Since joining, I’ve been involved in reviewing research proposals, looking at patient-facing information, and giving feedback on how projects are designed and communicated. Sometimes that means pointing out where language is confusing or inaccessible. Sometimes it’s about asking the awkward questions, like “Would this actually work in real life?” or “How would this feel if you were already overwhelmed?”

What I get out of Side by Side is a real sense of purpose. It feels good to know that experiences I didn’t choose and often wouldn’t wish on anyone can still be useful. That they can help make research more thoughtful, services more humane, and involvement more meaningful for the next person.

I’ve also gained confidence and skills along the way. I understand research better now. I’m more comfortable speaking up in rooms full of professionals. I’ve learnt how to challenge things constructively without feeling like I’m being difficult just for existing.

But one of the biggest things for me is feeling listened to. My input isn’t brushed aside or softened into something more comfortable. Even when I raise uncomfortable points, they’re taken seriously. For a lot of people with lived experience, that feeling of being believed and valued is rare. It shouldn’t be, but it is.

Side by Side also understands that people aren’t robots. There’s flexibility. There’s kindness. There’s recognition that health, energy, and life circumstances change. That makes involvement feel sustainable rather than exhausting or guilt ridden.

For me, Side by Side is about turning lived experience into something positive. It’s about helping shape research and services with people, not just about them. And it’s about being part of something that genuinely wants to do better.

That’s why I joined. And that’s why I stay.