Seedcorn funding 2024/25

Using creative letter writing as a participatory research methodology, the team aim to answer the questions: How did WSI approach health in their practice? What can we learn from WSI about co-creation of meaningful and engaging community arts practice?

Chronic kidney disease (CKD) is a long-term condition which affects the function of the kidneys. Currently, more than 1.8 million people in England have been diagnosed with CKD, with approximately another million people undiagnosed. It is a growing public health emergency but is often considered an ‘invisible disease’ because symptoms may not be present until kidney function is very reduced. Additionally, public health awareness of CKD is very low. To alter the course of this epidemic, raising awareness of kidney disease and sharing experiences of this condition is vital.

This research project will build on “Letter to My Kidney”, a participatory arts project which emerged from Barny Hole’s doctoral work which examined the treatment preferences and priorities of people with CKD.  Together with Elspeth Penny, people’s stories of living with CKD were captured in anonymous letters and curated to raise awareness of living with CKD and the difficult treatment decisions people make. By connecting patients, healthcare professionals, and artists through co-creation the team hope to explore and inspire an expansion of this work, and aim to build new, interdisciplinary understandings of chronic illness. This research will utilise this creative letter writing process, by guiding individuals with CKD in a creative advocacy process, their stories will be taken to the audiences that they feel need to hear them

What will the project involve?

This project will begin with Archival research using the WSI collection.  Initially it will focus on materials which explored the role of arts in community healthcare settings with patients and staff. Working collaboratively with the theatre collections this will be transformed into a guide outlining how the WSI collection can be used as a resource to support and inform the development of participatory, creative and arts-based health projects.

Participants from diverse backgrounds, living with CKD will be invited to join a participant group to share their experiences of living with CKD through a letter writing workshop and co-produce further activities. The research team will share the archival work with the group to open up a discussion on whether this helps people with CKD to imagine how they want their stories to be told and investigate who they want stories to be shared with, and why and what format(s) they would like this to take. The research group and participants will co-design resources to showcase the work delivered through this project through a mini mobile pop-up exhibition as well as producing an academic paper.

Who are the team and what do they bring?

• Elspeth Penny (2BU Productions Ltd)  is an arts and health advocate and specialist known for co-produced, interdisciplinary projects that amplify voices often unheard in healthcare.
• Barbara Caddick (Centre for Academic Primary Care and History, University of Bristol) carries out research in primary care focusing on medicines and prescribing. Barbara brings expertise in archival research.
• Barnaby Hole (Bristol Medical School, University of Bristol) is a kidney specialist doctor and researcher whose work has highlighted the challenges faced by patients due to the invisible nature of kidney disease.
• Lucy Plumb (Bristol Medical School, University of Bristol) is a children's kidney doctor and researcher whose work with children and young people living with kidney disease has revealed the impact of the illness on patients and families.
• Julian Warren (University of Bristol Theatre Collection) is Co-I on the Wellcome funded project ‘Firestarters - the rise of a community wellbeing movement: four decades of participatory arts, co-creation and embedded engagement in the archive of Welfare State International’, which is conserving, cataloguing and making publicly accessible the archive of this pioneering performance company.

What is to come?

The research team hope to develop this work into a larger funded project.