Bringing compassion, responsibilities and co-production into story collecting and story telling: perspectives from Peer Working

Written by the Peer Working Community of Excellence Working Group:

Jamie Brown, Jane Faulkner, Oscar Patton-Lyons, Alexandra Lima Dimitrijevic, Ella Goldberg, Nil Suner, Cerdic Hall, Nat Farley, Vanessa Bennett

In this blog, the Peer Working Community of Excellence Working Group reflect on and share insights from an event they planned for community members that took place on 9 May. Over 100 community members attended the event In Islington and took part in sessions that were themed around values in peer and lived experience work, sharing experience through stories and career development.

What story telling means to us in the context of peer working

Storytelling can be a powerful way to convey the human experience and connect with others. It is part of our everyday lives, and used to describe how we talk about ourselves and way in which we experience and relate to others in conversations of all contexts and cultures. It's how we show who we are, who we want to be, and who we want to be seen as.

However, we appreciate the term ‘stories’ and the way these are used can be sensitive and triggering for some. For this work, and this blog, we are talking about using this method to draw out meaning, purpose and value of someone's lived experience to enrich, enliven and develop peer working and recovery. This can include recounting, constructing, retelling or the sharing specific elements and impacts as decided by the individual.

"Our raw lived experience is like a potato. It's wholesome and full of potential. When we process and refine our experiences, much like turning a potato into a hash brown, it becomes more digestible and easier to share. Just as a hash brown is easier to cook and requires fewer potatoes, our processed stories are more accessible, impactful, and resource-efficient" - Oscar Patton-Lyons, Central North-West London NHS Foundation Trust

We've also started to talk about our experiences more and more to explore, communicate, understand and ‘evaluate’ how we navigate our health and well-being. In the context of peer working (see our previous blog for more on how peer working is represented in this community), sharing our experiences in conversation can benefit both the peer worker and the person we are supporting. It can become an agent of change, but knowing the balance and boundaries to maintain a supportive relationship can be difficult.

A balancing act: impacts vs sensitivities when incorporating ‘experiences’

The connection of sharing ‘experiences’ can bring relief, joy, and a sense of knowing that someone can understand. At the same time, it can also evoke sadness, fear, and anxiety in the moment or after for the person sharing. For some of us, it may be triggering, overwhelming us with emotions or memories and leaving us feeling more open and vulnerable.

Developing skills to share our experiences safely can be a powerful approach to help us understand – or evaluate - the value or impact of relationships, services, and programmes we have encountered. This can help us look at how we collaborate and co-produce within healthcare and research environments. We need to hold this process with sensitivity and care, ensuring our motivations and methods are ethical and that there is space for another's story within ours.

In previous Peer Worker Community of Excellence workshops, our members proposed to develop and tell their stories around peer working as part of a programme to recognise the impacts their journey has had on bringing about change for themselves and others in a professional capacity.

But questions arose around:

• How can we ensure that communicating what may include our lived experiences happens in a safe, caring, and compassionate way that honours preferences, sensitivities, fears and unintended harms that may or may not be clear in the moment of telling our stories?
• How can we avoid exploiting people's experiences and vulnerabilities by thinking and working responsibly?
• Is there a safe way to share parts of our lived experiences within peer working?
• What types of media (e.g. verbal, written, digital, art forms) and approaches to storytelling 'feel safe' for whom, and how does permanence of the story (i.e. how long it is available) with some media help or hinder this?

We explored these questions with Community members from the perspectives of those who are in recovery from mental health challenges and now support others to understand their experiences as part of their recovery journey.

Potential benefits of communicating through stories

Engaging in storytelling and seeing your story 'out there' can have several benefits and risks. These are some of the themes that were identified from an activity at the workshop considering a wide range of media that can be utilised (e.g. written, art forms, video, etc).

In developing our approach to story collecting and telling, the Community of Excellence realises that it is crucial to ensure that our methods are compassionate and effective. The following table aims to provide some guidance that balances the therapeutic benefits of storytelling with the need for sensitivity and ethical considerations. By considering these themes, we can create a safe and supportive environment for sharing impactful personal narratives.

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How have we considered co-production principles?

The idea for this activity at the workshop came from a working group co-production session, where we discussed how to responsibly and compassionately go about recognising and valuing the journeys and successes of lived experience and peer work through stories. When sharing stories of Peer Working, there needs to be a benefit to everyone, and it is important to avoid causing harm. Together the group designed a way to gain different perspectives on the collection and use of stories beyond the group through this workshop. In this way, we have responded to some of the questions that were raised in the workshop/session and demonstrated greater inclusivity with members beyond the working group.

Feeling safe comes first and foremost. When we feel we are included equally in decision-making processes – we have power to make choices, feel more in control and benefit from the process as well as the output. We hope we have designed a responsible and compassionate approach that will be helpful in deciding when and how to safely develop and share stories related to Peer Working. Importantly, we want to enable everyone involved to feel comfortable long after the ‘event’.

Interested in communicating your Peer Working story – some opportunities…

• Podcasts about lived experience roles
• Creative storytelling workshop
• Career development mapping workshop

If you have an idea, want to share, or have the opportunity to collaborate with us, please sign up to get involved or receive updates from the Community of Excellence  (or email cerdic.hall@candi.nhs.uk)

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Photo Credit: Canva

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