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Recognising patient experience through poetry

'Everything will be OK'

A collaboration between the Children's Hearing Centre (St Michael's Hospital) and Beth Calverley, Poet in Residence (University Hospitals Bristol & Weston NHS Foundation Trust)

Families and staff members in the Children's Hearing Centre have generously shared their experiences to be transformed into beautiful co-created poetry.

Four volunteers described their journeys as family members of a baby or child with a permanent hearing loss, including unilateral hearing loss, bilateral hearing loss, and different severities of deafness including profound hearing loss.

Staff members also shared their feelings and experiences of supporting families throughout their childhood years, from the moment they find out about their children's hearing loss.

Beth hosted a gentle conversation with each person. They were free to share as much or as little as they wished. She wove their words into a poem, live in the moment, and invited each co-creator to shape the poem as they wished.

Some sessions took place in person while others took place via phone/video call.

Each person received the original typewritten poem to keep as a memento of their experience.

Beth told us she had found the sessions deeply inspiring: "Looking back at the poems and sessions, I feel a wave of privilege to have spent time with family members, listening to their experiences. They expressed many emotions: shock, worry, uncertainty, guilt, connection, pride, love, joy. Throughout the poems, there's a thread of trusting intuition, tuning into a deeper rhythm, and finding creative ways to connect with the world. These connections seem all the brighter for it."

Feedback from different parents:

"Taking part in the poetry session was really useful to me. It gave me the opportunity to pause and reflect on how I felt at the beginning of our journey with hearing loss and how I feel now. I had a jumble of feelings and emotions around finding out that my daughter had hearing loss and in the time since. In the session, being asked questions in a structured way and my answers being summarised, gave me clarity on how I was feeling, how far we have come and the positive future that I now look forward to for my daughter."

"It was really therapeutic to look back at my experiences. I hadn't ever stopped and taken stock of my and my child's journey. It felt so special to end up with a poem at the end of it that means so much to me and my child".

"It was a really useful opportunity to reflect and to notice how far we have come since our child being identified as being deaf."

"It's been a lovely way to summarise our journey"

"I was listened to and I got a poem out of it. The fact a clinician sat in and listened as well meant she got to hear how difficult it is for parents, and that is so beneficial. Beth made it easy to do. I didn't need to come up with anything beyond what come naturally."

With each family's permission, their poems are shared below for other families to read, offering a sense of what the future may hold. The Children's Hearing Centre team poem is also included in this collection of poems.

Expression - Catherine 

Gut-feeling - Juliet 

Turning Heads - Jessica

Finding Out - Hannah