In 2019, we, as a group of patients and researchers, were invited to rethink how the executive board received and
responded to patient stories at a specific NHS hospital trust in the UK. Through an iterative series of meetings, we were
able to co-identify common concerns and together develop a distinctive narrative framework for ...
In 2019, we, as a group of patients and researchers, were invited to rethink how the executive board received and
responded to patient stories at a specific NHS hospital trust in the UK. Through an iterative series of meetings, we were
able to co-identify common concerns and together develop a distinctive narrative framework for effecting change by
sharing patient experiences. This narrative framework is designed to help patients position themselves as ‘part of their
healthcare team,’ emphasising roles and responsibilities between patients and health practitioners to compare ideals with
reality in patient experiences. While the project was promising, several factors led the hospital to withdraw from working
with the group—including the COVID-19 pandemic and changes in key NHS staff. In this article, we report on key
support structures and obstacles which influenced the project, as well as its outcomes and limitations, with a view to
constructively informing future endeavours at other healthcare institutions. We offer concluding reflections on the
significance of collective voice, accessibility, administrative support, and senior staff buy-in. We feel these reflections are
especially important since the cumulative effects of austerity and the COVID-19 pandemic have made meaningful
commitment to patient involvement significantly more challenging for healthcare institutions, both in the UK and
beyond.
