Lived experience work reflection

Over the years, my fellow lived experience workers and I have engaged in meaningful conversations, sharing our stories and highlighting the challenging journey we undertook as consumer peer workers at my local health service. Many of us were hired in 2017, filled with enthusiasm and a strong desire to take on more responsibility in this space. We aimed to contribute positively to the care and discharge planning for our fellow travellers (sometimes ourselves), striving to integrate lived experience into the system. However, the initial excitement soon gave way to frustration as things did not unfold as we had envisioned, leading to feelings of isolation and disillusionment.

The onset of the COVID-19 pandemic marked a significant turning point in our work. With the need to transition from in-person support to phone calls, our interactions felt increasingly robotic and impersonal. This abrupt shift not only heightened our existing struggles with the local health service structures but also left us feeling even more unsupported. Despite our efforts to share our experiences and seek assistance, the lack of meaningful change was disheartening.

A glimmer of hope emerged during a workshop focused on co-production, which sparked enthusiasm for improving mental health services. Unfortunately, I had already decided to leave by that time, disillusioned with the system. The reality for the remaining peer workers was daunting; with only one peer worker left, they faced overwhelming pressure and unrealistic expectations. I observed their passion for the work gradually morph into stress as they struggled to articulate the co-production model. Often, they found themselves relying on others for support. As demands escalated, their mental health began to decline, leaving them feeling trapped and misunderstood within a system that seemed unyielding.

Reflecting on the start of my lived experience journey at my local health service, I often felt invisible, grappling with systems that appeared indifferent to the unique experiences of individuals like us. My frustrations echoed those of my colleagues, as we faced repeated instances where our needs and insights were dismissed. This patronising attitude only deepened our sense of isolation. Frequently, we were assigned tasks that others were reluctant to undertake, or we were thrust into difficult discharge conversations with the expectation that, as peer workers, it was our responsibility. This mentality set us up for failure.

What compounded these challenges was the way my frustrations were often labelled as unreasonable or aggressive. When I stood up for myself and advocated for necessary changes, the resistance I encountered felt more like a barrier than a source of support. It became evident that, within these environments, we were being systematically set up to fail.

The connections between my own experiences and those of my fellow peer workers underscore the critical need for genuine support and understanding from organisations. As we advocate for systems that authentically value lived experiences, it is imperative that our voices are not only heard but also respected. We need the backing to address the complexities of our roles, rather than being expected to shoulder the burden alone.

Changing these entrenched systems will undoubtedly be a formidable challenge, but it is crucial to foster a more inclusive and compassionate environment within mental health services. The journey towards this transformation requires dedication, collaboration, and a steadfast commitment to ensuring that lived experiences are integrated meaningfully into care practices.

Peer workers cannot be governed by clincial governance frameworks...

love R and H x

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