When My Words Went Elsewhere – true co-production across arts and health

On Wednesday, as a professional advocate of patient leadership, I heard about how hard it is to foster collaboration in healthcare. A group of patient leaders and a well-meaning NHS organisation struggling to find common ground – vying for shared understanding, coded language, tensions between necessary accountability and over-control, the weight and freight. So fraught.

And I wondered whether true co-production in the NHS is possible. Whether we can fly together.

On Friday, as a poet, I travelled (in more ways than one) to the Bethlem Gallery to run a creative writing workshop on ‘resilience’ and then perform in ‘The Jewel Merchants’, an operatic piece, composed by Rose-Miranda Hall and featuring librettist and soprano, Lila Palmer, and Cellist, James Whittle.

And I experienced co-production on a different level, as my words went elsewhere.

Rose and I had decided to collaborate after meeting at an amazing arts and health event called Critical Voices. She brought in Lila and we realised that ‘The Jewel Merchants’ – a parable I had written about personal recovery and as analogy for the emerging patient leadership movement – could provide a backdrop for a word, song and music performance.

As our collaboration blossomed, we realised we had more than that. That our coming together was us modelling co-production in a unique way – we got to know each other, trusted each others’ different talents and leaned to let go. Rose and Lila checked out how I felt about my poems being re-crafted, rhythmically and schematically changed, mixed up and mashed up. That was a bit weird, but I was loving what was emerging.

My ideas were not being plagiarised or co-opted for someone else’s benefit. I did not feel a weaker partner and reliant on someone else’s power – things I have often felt as an outsider-innovator in the NHS.

I stayed part of the process, equal decision-maker in what happened next to ‘our’ vision. Instead of the ideas and words being crushed under the dead-weight of political necessity and external accountability, an opera took shape. I was learning about a different world. I was travelling.

And then… another layer of possibility. While I had been thinking about a separate creative writing workshop idea at the Bethlem Gallery, Rose and Lila asked ‘why not tie a workshop to the performance?’.

Since the parable of the Jewel Merchants included a scene where fellow travellers met around a camp fire to share their stories about suffering, why not invite artists, patients, people to do likewise as part of a workshop on the same day as the performance?

So, on the Friday morning of the performance, on a beautiful autumn day, ten of us gathered at The Bethlem Gallery for a workshop.

We imagined ourselves as fellow Jewel Merchants, on our long, hard journey from the caves of suffering, where we had discovered jewels that we were bringing to the citadel.

These jewels might represent all the hard-won wisdom gained during illness, disability and injury… resilience, insight into what matters in our lives and hearts, the witnessing of broken and healed relationships, the feel of powerlessness in a professional’s headquarters, the bearing of pain, the courage to lift one leg in front of the other, the emerging awareness of small things, a fragile sense of strength through vulnerability, a witnessing of real humility and shared humanity, gratitude for kindness shown, vision of a healthcare system that might, just might become centred on what matters, glimmering (and often dashed) hope, damaged trust…

And we asked participants to imagine the stories they would tell at the campfire.

And, at that moment, a butterfly flew in through the open window. And a leaf-blower cut into the silence. And we gave ourselves time to pause, listen to ourselves and write. And our words went elsewhere.

After half an hour we came back and read what we had written. It was probably one of the most moving moments of my life, as everyone shared their jewels.

There was realistic prose that described the struggle to reclaim meaning from the black hole of suffering; poetry about animals and landscapes; haunting fragments about psychological struggles and dreams. And humour, quirkiness, a different angle on familiarity, hope, tentativeness.

We all felt, as one person put it “overwhelmingly inspired”. And the room felt warm with trust amongst people who had been strangers two hours earlier.

And then, Lila, James and I performed the operatic piece – a privilege to witness the total physicality of song and cello’s voluminous embrace.

Way out of my comfort zone, I tried to make sure I came in with verse at the right time and read properly without trembling hands rustling the manuscript too much!

Three participants chose to read out their works at a moment we had created especially for the ‘campfire’ scene.

I saw three people in the audience cry (I struggled not to!). One audience member came up to me and said that they had worked with service users on their ‘narratives’ for years, but this had given him a different insight into how people voice their experiences. Another had choked on a particular phrase in one of my poems. Another called it a “strange but weirdly moving experience”. The workshop participants who opted to read their piece showed themselves to be brilliant performers.

A video of the piece will be available soon, and I will make sure there is a link here when it is ready.

We are hoping to take the workshop and performance elsewhere – let us know if you’re interested in being part of the next chapter.

Meanwhile, back in healthcare land…I talk about co-production and patients as partners a lot. I have seen glimpses of it over the years.

But over the last few months, working outside the NHS, I have experienced it properly in a different way.

In the NHS, it seems to be more about ‘fitting’ bits and pieces together and a hell of a lot of awkward and necessary compromise in order to align everyone’s existing agendas. Power plays out. It feels heavy and lumbering.

The NHS often thinks acronyms are creative, infographics innovative, and the discovery that they can signpost ‘patients’ to a local community dance class as revolutionary. Sigh.

This experience has shown me just how wrong-footed statutory mainstream services can be.

The Jewel Merchants offers a different way. As I left the Bethlem, the butterfly flew out of the window. And the leaf-blower lay silent.

If you liked this blog, do read others at http://www.futurepatientblog.com

© 2017 David Gilbert

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2 thoughts on “When My Words Went Elsewhere – true co-production across arts and health

  1. Wish I could have been there at The Bethlem Gallery for what sounds to have been a really creative, moving and meaningful experience.

    I think there will always be struggles in the NHS with patient leadership, however committed a small group of people are, due to political external and internal pressures.

    But every now and then the gloom lifts and light fills the room and we must celebrate those moments and spread the word.

    Like

  2. This sounds wonderful – thanks for sharing a taste with us. Times of ‘overwhelming inspiration’ are so rare, and capturing them gives hope in darker times.

    Like

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