Elevating Lived Experience

The Value and The Risk

In this post, we reflect on our journey of co-producing and delivering training workshops for a multi-disciplinary team (MDT) dedicated to supporting individuals with multiple complex needs. These workshops were designed, developed, and facilitated by Peer Workers with lived experience, working within the MDT...

“The most inspirational training about addiction and recovery I have attended… it has supported me to reflect on some of my professional bias and narratives that I have held about people experiencing addiction and to understand the intense and unpredictable nature of recovery.” - Social Worker 

Who are we?

We are the Peer Worker team within the Brighton & Hove Changing Futures programme. As part of the MDT, we offer one-to-one peer support to individuals engaged in the Changing Futures programme.

Where it all began

“There just isn’t enough focus on recovery, and I think that’s because there is a lack of understanding of how addiction works and what recovery actually takes”.  – Peer Worker

This wasn’t a criticism, but rather an observation after a year and a half of working closely with our clients. We saw first-hand the cyclical barriers that prevented lasting change. Recovery is a constant theme within our wider team, and it represents a shared hope for our clients. But we began to ask: Is it understood what a focus on recovery should look like? It requires a deep awareness of each individual’s unique history with addiction, the trauma that often comes with it, and the complex social, physiological, and neurological factors at play. It also means acknowledging the enormity of the challenge in even considering recovery—not to mention initiating and sustaining it.

“It’s such a huge risk, I don’t think people really understand that” – Peer Worker

And that’s where it all began: The risk of recovery.

A week later, we gather—excited, apprehensive, but armed with coffee, snacks, pens, and flipchart paper. So, what now? What do we want to communicate? How far do we want/need to take it?

As we often do with co-production projects, we turn to our co-produced values and our shared vision to guide us. This brings clarity on the task:

• How can we improve the ‘quality of connection’ between worker and client to better support someone through addiction and recovery?

• How can these sessions enhance understanding and capacity to ‘be with’ and see from the clients’ unique perspective?

• How can we use our lived experience and approach this in an innovative way?

With these questions in mind, we dive back into the concept of the "risk of recovery" and begin brainstorming.

The Co-production Process

It was crucial for us to define the focus of these workshops based entirely on our lived experience, drawing on what we wished others understood to support us more effectively. Not personal details, per se, but a deeper understanding of the complexities buried within the word "change." To see the whole person, the life lived before we have come to know them in their darkest moments. To illustrate this, we’ll share an example from our discussions, drilling into what we felt were the core of the issues.

• Traditional addiction training often emphasizes substance profiles, harm reduction, and risk management—crucial areas of focus. However, in the midst of the chaos, these risks can sometimes feel distant or less tangible. So, what really presents a risk? It’s the deep-rooted belief that nothing else will work—that survival itself is uncertain. The fear isn't just about continuing to use, it’s about the belief that we won’t survive if we stop.

  
  

• When there’s a lack of in depth understanding and workers are struggling to find effective ways of communicating, they often fall back on making a case for recovery as a solution, using the concept of risk and consequence to motivate change. While others may think, “You won’t survive if you keep using,” we believed “We won’t survive if we stop using.” While physical death is always a tangible risk, long before that danger is the looming threat of psychological annihilation—the sense that we might lose ourselves entirely, if we haven’t already.

  
  

• To contemplate change, is to meet the threat of that. This is what we needed to express.

You might be wondering how someone could come to believe this. And this is where lived experience offers insight into what often seems irrational or illogical.

 “The trauma-informed lens which the workshops took allowed the team to move past general harm-reduction advice and really consider how substance use, and addiction impact all areas of someone’s life.” - Domestic Violence and Abuse Worker

So, the question often arises:

What is the value of lived experience?

Those with lived experience understand the process and stages of addiction recovery, not just in terms of information, but in felt experience. We recognise the layers of masking, resistance, ambivalence, and people-pleasing—coping strategies that often conceal the true emotions beneath the surface. Lived experience allows us to see beyond these defences and understand what’s really being felt behind the complex web of self-deception.

It’s not just the ability to see beneath the surface, but also the understanding of how to navigate aspects of addiction such as denial and delusion, while continuing to walk alongside the person without an agenda.

Sharing what we know

What if the knowledge we’ve gained could be shared with those who haven't had that experience? Rather than being confined solely to the peer-to-peer relationship, what if this wealth of knowledge was made available more broadly? This is not meant to diminish or replace the vast expertise, skill, and knowledge already present in those who care so deeply for their clients, not by any means. Instead, we propose that lived experience and professional knowledge go hand in hand—fusing together and working collaboratively, not just in tasks, but in the sharing of knowledge, for the benefit of all.

If our collaborative goal is to help someone navigate their way out of the maze, we recognize the many possible paths available. However, what’s even more crucial is understanding the underlying mechanisms that keep people trapped, even when clear signposts point the way out. This is where the more nuanced and skilful work occurs. Without a deep understanding, it’s impossible to truly meet someone where they are.

What is essential is recognising how our interactions, interventions, and systems—often unintentionally—can mask hidden agendas, misunderstandings, power imbalances, judgments, expectations, and assumptions. This includes the assumption that recovery is either desired or even thought to be possible. For those struggling with addiction, the shame they experience and try to escape from every day often erodes their belief in the possibility of change or their own ability to make it happen. In this context, discussing the possibility of recovery can, paradoxically, highlight their perceived inability to recover. We arrive back at some form of psychological annihilation, where we are misunderstood, and the “rinse and repeat” continues.  

Our Agenda

To get across the complexity of it all, we co-created the focus, narrative, learning outcomes, communication style, and discussion topics for the workshops. Ultimately, we invited our wider team to view their relationships with clients through the lens of lived experience, using our own stories and insights as the foundation.

It was a risk that more than paid off.

A risk that highlighted the value of our experience, our recovery journeys, our specialism and the unique role we play within the team. It’s important to note that this was no small ask of ourselves—it required us to dive deeply into our own experiences. But we felt it was essential if we were to truly capture the experiences of those we walk alongside.

At every stage, it was vital to honour each peer worker’s experience, weaving them together to present a comprehensive picture of addiction and the diverse pathways to recovery. No person’s experience is more or less important, we strived to reach a diverse, representative picture that would enable the team to consider the vast differences in each person they support.

We co-produced and delivered three training workshops

Workshop One | The Risk of Recovery

An exploration of how addiction develops and the toll it takes on a person. We delved into the psychological, social, and neurological effects of addiction, examining how it gradually narrows what gives life meaning. The workshop then invited participants to reflect on the risk of letting go of the only remaining coping mechanism—the route of escape.

Workshop Two | The Risk We Took | Experience, Strength & Hope

An immersive look into the recovery journey, beginning middle and end. The session was modelled after a traditional 12-step fellowship meeting, where we took turns chairing the meeting and sharing our stories. The team was invited to see the person beyond the addiction and to begin to appreciate the depth of what is shared in these meetings. What is needed for an individual to recover is an extraordinary vulnerability, where shame is confronted and openly shared.

Workshop Three | The Risk of Shame  

We are not just working with addiction; we are working with shame. This was an exploration of how individuals navigate the ever-present threat of shame. The team was invited to examine addiction through a shame-sensitive lens, providing a valuable opportunity to better understand how the avoidance of shame influences behaviour. Crucial to this, was an understanding of chronic shame, often originating long before the addiction developed to cope.

“It allowed me to take a step back and I felt like I was more able to put myself in a client’s shoes and understand how they may be feeling.” – Community support worker 

“One of the best workshops about recovery and addiction I have ever attended.”- Domestic abuse and Violence Worker

“It helped me better understand what an enormous undertaking it is for our clients to resist cravings, let alone deal with their complex emotional and social landscapes.” –  Addiction Recovery Worker 

The Ripples

It was always our hope that the impact seen above would ripple out to the clients, fostering a deeper connection between worker and client—one that could evolve to hold the complexity and ever-changing landscape of addiction and recovery.

What we came to realize more profoundly, through our own experience of creating and delivering these sessions, is the undeniable value that lived experience roles bring in many forms. When given the platform and autonomy to create from our own lived experiences, we were able to elevate the value of lived experience itself. We acknowledged our strengths, the immense challenges we’ve overcome, and the risks we’ve taken—and continue to take—to benefit those we support.

What we did not anticipate was a deepening of the ‘quality of connection’ between our team and the wider MDT.

“Personally, I felt very close to the team during and after the session and it was a lovely (and emotional) way to bring us together more. Thank you.” – Community Support Worker

“I did not anticipate it being an honest space to this extent… I was extremely touched that the team were prepared to hold this space for us, allowing the wider group to understand how complex the emotions can be in such a meeting.” – Social Worker

We have personally observed that lived experience roles are often placed at the lower end of the hierarchy, as reflected in the pay scale and many other factors. The wealth of experience we bring is often undervalued or misunderstood – evident in the constant pressure to prove our value.

What we didn’t anticipate however, was how our inherent value would ripple out, even bouncing back to us in unexpected ways. Throughout the process, there were numerous opportunities to reflect on and celebrate our own journeys, which had a profound impact on our self-worth and our sense of value within the team. Often, in these roles, we can feel ‘othered,’ but instead, these experiences fostered a sense of belonging, standing side by side with our teammates, with equal value. Beyond the sessions, we saw a growing recognition of our experiences and expertise, with staff actively seeking our advice and guidance. This doesn’t mean we weren’t valued before, but part of the challenge in these areas is that people often don’t fully understand what we do and how we do it, or importantly here, the full potential of what we can bring.

By elevating lived experience, we were able to speak with authority on issues that only those who have lived through them truly can. These sessions played a crucial role in bridging the gap in understanding.

Uncovering the depth of value

We invite you, the reader—if you're in a position to do so—to take a risk and elevate the platform for lived experience roles within your organisation or team. Recognise that lived experience is not just valuable, but essential in creating a deeper, more authentic connection with the people you support.

Where possible, start together at the very beginning - co-create the focus of your work and the goals you want to achieve, bringing lived experience into the core of your mission.

By collaborating from the outset, you ensure that your approach aligns more closely with the needs, experiences, and perspectives of the individuals you are committed to supporting. This isn’t just about offering support; it’s about truly understanding the complexities of the journey, and the relationship between those you help and those offering support. When you open the door to lived experience roles, you're not only enriching your team but also creating an environment where the people you serve can see themselves reflected, valued, and heard.

We believe that this approach—rooted in collaboration, mutual respect, and a shared vision, has the potential to create real, lasting change. By lifting up lived experience, we all stand to gain a deeper understanding of the complexities of recovery and the true potential of human connection.

Thank you for connecting with us in this way.

Becca, Henry, Stuart and Sharna

Brighton & Hove Peer Worker team