The Trust Gap: Why Expert by Experience Programs Often Fall Short

There's a peculiar disconnect in healthcare systems today, particularly within the NHS. On paper, the commitment to involving Experts by Experience – people who have lived through healthcare challenges and can offer invaluable insights – seems clear and unwavering. The NHS explicitly states they value this expertise and want more of it. Yet in practice, professionals often report low engagement and participation from a seemingly small, rotating group of individuals. But is this really a case of public disinterest? Or are we witnessing something far more complex – a fundamental breakdown in trust?

When professionals claim there isn't interest in Expert by Experience programs, they're missing a crucial understanding of human psychology and institutional trauma. People who have navigated challenging experiences within healthcare systems often carry deep wounds. Asking them to return to those same institutions, to share their vulnerable stories and insights, requires an enormous leap of faith. People don't trust the very institutions that caused their trauma to listen to their opinions, they don't trust that the NHS will be able to see their shortcomings and make the changes needed.

Think about this: How many healthcare professionals belong to unions? They seek independent representation to protect their interests, despite being integral parts of the system. If professionals need this external advocacy, how much more might service users need genuine assurance that their voices will truly matter?

Too often, Expert by Experience programs fall into the trap of superficial engagement. Participants are handed surveys or questionnaires, and asked to tick boxes and fill in forms, but rarely see meaningful change emerge from their contributions. This tokenistic approach doesn't just fail to create value – it actively damages trust and reinforces skepticism about institutional commitment to real change.

We must acknowledge a difficult truth: engaging as an Expert by Experience means revisiting trauma. It means walking back into spaces that may hold painful memories, retelling difficult stories, and making oneself vulnerable again. This emotional labor is significant and deserves proper recognition and support.

But here's the critical point: the difficulty of this work is not a reason to abandon it. Instead, it's a call to build better, more supportive programs that:

- Provide proper emotional and psychological support for participants

- Create clear feedback loops so people can see the impact of their contributions

- Establish independent advocacy channels that help balance power dynamics

- Offer fair compensation for time and expertise

- Build in genuine decision-making power, not just consultative roles

A fundamental transformation of mental health services requires more than just occasional consultation with Experts by Experience – it demands their presence and influence at every level of the system. From front-line service delivery to executive boardrooms, from policy development to program evaluation, the voice of lived experience must be woven into the very fabric of mental health care.

This systemic integration means ensuring Experts by Experience:

- Serve on executive boards and high-level decision-making committees

- Participate in staff hiring and training processes

- Help shape policies and procedures at all levels

- Contribute to service design and evaluation

- Mentor and support newer Experts by Experience

For this to work, professionals throughout the system must genuinely understand and value the unique perspective that lived experience brings. This isn't just about creating positions – it's about cultivating a culture where experiential knowledge is recognized as equally valuable as clinical expertise. When a senior psychiatrist and an Expert by Experience sit at the same table, both voices should carry equal weight in shaping service delivery. We cannot continue with this at times tokenistic approach, we can't continue with the ceremonial position on a board that doesn't actually come with any power.

The solution isn't to throw our hands up and accept low engagement. Instead, we need to fundamentally reimagine how we structure these programs. This means:

1. Acknowledging past institutional failures openly and honestly

2. Building programs with trauma-informed principles at their core

3. Creating genuine accountability mechanisms

4. Providing robust support systems for participants

5. Demonstrating concrete changes based on Expert input

6. Ensuring representation at all organizational levels

The NHS's stated commitment to Expert by Experience input is admirable. But until we bridge the trust gap – until we create programs that truly honor and protect participants – we'll continue to struggle with engagement. The issue isn't a lack of interest; it's a lack of trust. And trust must be earned through action, not just promised in policy documents.

Only by addressing these fundamental issues and ensuring comprehensive representation throughout the system can we create Expert by Experience programs that truly serve both institutions and participants, leading to the kind of meaningful change our healthcare systems desperately need.