When Sophie Mae walked into a meeting in Dublin, she knew she was there because of her experience using mental health services in Ireland.
As a young person with lived experience, she was invited to take part in the development of a tool to help young people find clear and reliable information about mental health support.
Commissioned by Ireland’s Health Service Executive, spunout navigator was developed alongside spunout, a youth-led organization with expertise in involving young people in the design of information and services.
Sophie Mae was invited to take part from the beginning, which meant being involved before the decisions were made – and seeing that involvement lead to real changes.
When she arrived at the meeting and asked what spunout navigator was, she expected the project to have already been defined.
Instead, she was told: “You tell us.”
And that is what she did.
Being heard is not the same as having a say
The Health Service Executive had identified a gap: there was no single source where young people could easily find information about the support available to them. Sophie Mae knew what it was like to search for help online, using different apps and websites when she could not find everything she needed in one place.
“I have experience of the mental health services in Ireland, but more importantly, of the many apps and websites I used to plug the holes in the system”, she says.
Alongside other young people, she helped shape spunout navigator throughout its development. Her input ranged from the tool’s overall design to details that might easily have been overlooked.
One example was the “next” button.
In the original version of the decision tree, a user selected an option, and that option would be highlighted before they pressed “next” to move to the following question. Clinicians and other stakeholders reviewed the design and suggested removing the button. Research had suggested that someone experiencing a mental health crisis would want to complete the process with as few actions as possible, to avoid frustration.
When the revised version came back to Sophie Mae and the other young people, they saw a different problem.
Young people would most likely be using their phones, where screen space is limited. If someone tried to scroll and accidentally selected an option, removing the “next” button would immediately move them to the following question. For a young person already trying to find help, that could be confusing and frustrating.
The “next” button was put back, and it is still part of spunout navigator today.
Sophie Mae Harrington
Making a real difference
For Sophie Mae, this was a clear example of why people with lived experience need to be involved in decisions about mental health services.
“It felt really rewarding to see my feedback make changes in real time, to shape something we could be proud of and stand behind. It felt like I had genuine control and could make a real difference.”
The example illustrates what lived experience can bring to service design. Research and clinical expertise can tell us a great deal about what may work. People who use services can add another perspective: what happens when that service meets real life.
They know how people actually search for help, what can be confusing, what can create an additional barrier and what could make the difference between continuing with a service and giving up.
Yet people with lived experience are too often asked to share their stories without being given a meaningful role in shaping decisions or influencing what happens next.
Meaningful participation means involving people in decisions that affect their lives and giving them a genuine opportunity to influence policies, services and approaches from the outset. It means recognizing lived experience as an important form of knowledge alongside professional, clinical and technical expertise.
A wider shift
For Sophie Mae, the value of being involved was not abstract. She could see her experience changing a decision – and, in the case of the “next” button, changing something that young people will actually use.
Sophie Mae’s story also reflects a wider shift taking place across Europe. In 2025, WHO/Europe published a roadmap for integrating lived and living experience practitioners into policy, services and community, developed by a task force that included people with lived and living experience alongside other experts.
Since then, two rounds of consultations have supported countries in exploring how to implement the roadmap, initially bringing together participants from nine European countries. The longer-term aim is to build a network and body of expertise that supports the inclusion of lived and living experience practitioners and recovery-oriented practice across the European Union, as well as Norway and Iceland.
On this World Mental Health Day, let us move from listening to action – and build mental health systems with people with lived experience, not merely for them.