July 8, 2026
Life is a journey.
When I was first asked to join a project as an expert by experience, I was highly confused. I do not consider myself an expert in anything and felt like I was not experienced enough for what the project was about.
I hate being on camera, felt very shy, was worried about being out of place and was nervous about being on an online meeting with a camera on me.
But, I was at a point in my life where I had time while the kids were at school and was trying hard to come out of my comfort zone. Eventually, I thought “at the very least, I’ll earn a small amount of spending money”. So, I joined my first meeting. Cautiously and extremely nervously.
To my surprise, the meeting was actually great. Everyone was friendly, welcoming and normal. They weren’t arrogant, know-it-alls or martians speaking in a foreign language. It was like a group of friends talking. We did some quick introductions of who is who and any job titles in the room. The chair of the meeting explained their project and ideas. They were extremely welcoming of both positive and negative feedback which was pleasing to see. I have a knack for seeing the negatives and this is not usually socially accepted but I found a place where it was ok to point out the negatives.
As I became involved in more projects, I quickly realised that the people running the projects have no idea how things look from the other side of the table – and that was what I could bring. All my crazy life events and frustrations. All of the struggles and difficulties. All the situations where you feel “well if they just did it like this, it would make more sense”.
All of these can be useful to the people on the other side of the table who can use this to make life easier for others. For someone like me, that was an epiphany! Thus came a spiritual awakening and a journey of self-re-discovery.
There aren’t many jobs that fulfil your sense of being whilst you contribute to making positive changes for other people. I feel very lucky to be part of involvement opportunities. I feel that with each involvement project, I am also discovering so much about myself.
I quickly learnt that I was not obliged to share any parts of my life I did not want to. Every meeting was a safe space. I was able to let someone know (or switch off my camera) if I felt uncomfortable.
I learnt more about myself, what I really enjoy, what fulfils me, what I absolutely hate, what annoys me, what type of meetings I felt comfortable in and which ones I do not, how to advocate for myself and my needs and a whole load more. For example, after seeing other people advocate for themselves and their needs, I gained the confidence to do the same in my life. I recently started a new job and for the first time in 25 years of working, I felt able to be upfront about my needs and request reasonable adjustments.
I am an expert in my life’s experiences. The good, the bad and the ugly. As human beings we love to talk about life and things that have occurred, our opinions on how things should be. But, all of those talks rarely amount to changing things for the better. The world of involvement is a world where all experiences matter, all experiences are valid, all opinions matter, all opinions are invaluable and all of this can be used to make positive changes for the future.
I’ve gained a better understanding of areas that once felt overwhelming e.g. neurodiversity, health, governance, stakeholders, quality improvement, research, NHS management, and recruitment. What used to seem like impenetrable jargon is now far more accessible.
I used to shy away from topics like governance and research because of their complexity. But the spaces I’ve entered have been welcoming and grounded. Even in meetings with senior stakeholders or at board level, people have been open, approachable, and genuinely value my input.
When I haven’t understood something, I’ve felt comfortable asking for clarification and that’s always been met with support. If I’ve ever felt uncomfortable or undervalued, I’ve had clear channels to share feedback, which has been taken seriously and used to improve processes. There have been a couple of challenging moments, but these have been very rare. Even then, they’ve created opportunities to speak up and help shape better, more inclusive ways of working with people who bring lived experience.
For the past couple of years, I have been involved in work that brings the voices of patients and carers into projects across universities, charities and NHS trusts. It is something I genuinely love and look forward to. There is a real sense of purpose in knowing your experiences can help shape services and make them more meaningful for the people who use them. I’ve always felt strongly that this kind of work shouldn’t be a “tick-box” exercise. When it’s done well, it can lead to real, positive change and that’s what keeps me motivated.
One project that really stands out was helping to develop a mental health app for young people experiencing depression. It was so important to us that it felt genuine and supportive, not full of unhelpful phrases like “just think positively.” Instead, we focused on what a young person might actually feel like on a difficult day, and what would realistically help. For example, rather than suggesting something overwhelming like going for a walk, we explored smaller, more manageable steps like simply sitting by a window for a few minutes. We also worked on how the interface should look, and how the compliance and progress through the app should be presented. Being part of creating something so thoughtful and practical was incredibly rewarding.
Overall, this journey has introduced me to so many people who not only listen, but truly value lived experience. Together, we’re helping to shape research and services in a way that feels more inclusive, more thoughtful, and ultimately more helpful for families like ours.
Being part of the network steering group has been a wonderfully positive experience. I’ve had the chance to work alongside others to share ideas on everything from website content and layout to colours and logo design. It’s been refreshing to see how openly people share their opinions and how much those views are valued.
One moment that stuck with me was when we were reviewing logo options. There was one design I found really hard to read because of the font, and I remember wondering if it was just me. It was such a relief when someone else said they felt exactly the same. That sense of shared understanding is one of the most rewarding parts of involvement work. You realise you’re not alone, and your perspective genuinely matters.
As a group, we also help shape what the network stands for, which direction we would like the network to develop in and how researchers can better work with people who have lived experience. It’s meaningful work, and it feels good to know we’re helping to influence positive change.
Just go for it-we all have lived experience!
The network has been set up to champion the voices of parents and carers in children and young people’s mental health research.
Find out more and sign up at: parentcarerresearchnetwork.org.uk