Health as something that happens to you

I often reflect on how, for many of us with long-term or complex conditions, accessing care becomes our first experience of “patient and public involvement” (PPI). Not because we were invited to consultations or steering groups, but because we were forced to observe and sometimes challenge decisions made about us, not with us.

That realisation came with a mix of feelings: frustration, isolation, but also a growing desire to understand how the system could be better.

This project brought those early memories back. Many young people shared that this was the first time they’d been asked to reflect on their own health. For them, health wasn’t something they had agency over but it was something that happened to them.

That’s critical. Because far too often, people only get a voice in shaping services after something has gone wrong, a complaint, a misdiagnosis, or a delay. And for others, particularly younger people, that voice may never come at all. Instead, parents, teachers or professionals speak on their behalf, often without their full understanding or consent.

 

Vaccines and consent

Take vaccinations. They’re a routine medical procedure, but one where consent becomes especially unclear for young people. Some aren’t aware they can refuse; others don’t feel confident enough to ask questions. And in many settings, there’s little time or space to explore what informed consent really means to them.

If a young person doesn’t feel able to say “yes” or “no” to a vaccine, what does that tell us about their role in broader healthcare decisions?

Interestingly, students with long-term conditions were more likely to be familiar with navigating health services. Their relationship with the NHS had been built over years. But what about those who are mostly healthy? Or those who feel disconnected or intimidated by healthcare environments?

 

We need more than a single youth voice

It’s not enough to consult a young person. We need diverse youth voices from different backgrounds, health statuses, ethnicities, and lived experiences. When we fail to involve them, we not only miss critical insights, we reinforce cycles of distrust that persist into adulthood.

Participation must be more than tokenism – it must be part of how services are designed, delivered, and evaluated. Organisations should ask; are current engagement opportunities truly open to all young people or do they mainly serve those who already know how the system works?

 

Participation shouldn’t wait until the point of access

This project reminded me that we must build bridges before they’re needed. Too often, services consult young people in isolation or at the point of access, if at all. We need joined-up approaches across child and adult services, and co-production that supports meaningful involvement from an early age.

Vaccination was the starting point for this project, but it opened the door to a much bigger conversation: what does meaningful healthcare access look like for young people? How do we move from compliance to collaboration? From one-off interventions to sustained relationships?

Access to care is not just about appointments or procedures. It’s about being seen, heard, and valued at every stage. When I was younger, I didn’t feel I had that. But I’m hopeful that through projects like this, more young people will.

 

Final thought: the power of a seat at the table

When you give someone a seat at the table early on, you don’t just change their experience of health services, you transform their sense of self-worth, agency, and future engagement in public life.

Let’s not wait until young people are disillusioned to invite them in. Let’s start by trusting that they belong there now.