Using visual storytelling to support patient-led change

Meanwhile my Fellowship enabled me to explore the impact of the Japanese education system on children’s sense of agency - their self-belief and ability to make a difference to others. Many years on, my interest in human agency remains, although now focused on adults living with a life-limiting illness. Many individuals receiving palliative care regret the loss of identity and agency their illness brings. They wish to continue to play an active role in their own life and that of others, including making changes to aspects of their care which are not working for them. From a service-level perspective, such community-led approaches to palliative care are key to filling the demand arising from a global increase in life expectancy.

Responding to these imperatives, I am working with a development group of patients, clinicians, volunteers and academics to design a programme that supports palliative care patients in leading change. The Patients Changing Things Together (PATCHATT) programme will bring together individuals experiencing serious health-related suffering. Online workshops will support participants in identifying a change they wish to bring about in their care, planning for this change and carrying it out.

The development group’s discussions around facilitating PATCHATT’s online workshops provoked a memory of Japanese manga. I wondered if visual storytelling could be used as a catalyst for palliative care patients’ leadership of change. We decided to produce a series of comic strips as examples of the change process we hoped to support. Drawing on Marshall Ganz’s work on public narratives, NHS England advocates galvanising action through telling three types of stories: ‘stories of self’, which reveal the values moving an individual to lead change; ‘stories of us’, where individuals share values and concerns with others; and ‘stories of now’, which summarise the urgent need to plan and act. Our first three comic strips are based on this three-part model and tell the story of a character called Bob and his change journey.

The first strip, Bob – the Story of Me, suggests that change begins with self-reflection and sharing.

The second, Bob’s Story of Us, suggests that change relies on us gaining support from those around us.

The final strip, Bob’s Story of Change, shows how individual change can lead to benefits for both self and others.

The PATCHATT pilot takes place shortly and we are now producing comic strips for other characters which we hope will provoke our participants’ reflection and action.

My own story as told here is a result of my Fellowship experience. Manga was important of course, but my belief in my own agency, my ability to lead change which benefits others as well as myself, was a direct result of my travels. My final reflection in my 1997 Fellowship report captured this: “I would like to wholeheartedly commend an initiative which provides the means to release the potential within so many of us who would otherwise never fully understand what we are capable of achieving.”

Almost 25 years later, the PATCHATT project is a testament to this enduring impact.