Many years ago I interviewed someone and asked ‘what was the most important factor in helping you recover?’, without pause she said ‘its courage really’. She had lived through an incredible number of setbacks following a large stroke that left her paralysed and with difficulty speaking and swallowing. It wasn’t all about the therapy, it wasn’t all about the stroke unit, it wasn’t all about the care staff, it wasn’t about equipment… in the end it was all down to her courage, and that’s what helped her to make numerous choices day to day and decisions about future possibilities.
This response surprised me as I had been expecting a different one. My assumptions about the importance of stroke services, structures and environment came well down on her list behind the need to have courage and belief in herself to get through all the emotional and relational interactions of everyday life. Reflecting on this response I thank her for helping me appreciate the benefit of being open to surprises and possibilities you least expect.
I came relatively late to participatory action research and already thought I was involving people, families in my research and improvement projects. Developing the first Bridges stroke workbook had involved staff and stroke survivors but on reflection my own relatively fixed ideas about what the book should look like prevailed. As the number of books and tools [for people with stroke, brain injury, multiple trauma, progressive neurological conditions] developed I started to let go of many of my assumptions and really trust in the people I worked alongside. The process had mutual benefit and was often a cathartic process of sharing concerns, reflecting on solutions and experiences. Relinquishing control and harnessing the ideas and skills from people that live through unique experiences of stroke or other long-term conditions, brings many unintended consequences, not least the joy of being wrong.
Participatory approaches to healthcare improvement require a slower pace of sharing and producing knowledge. As clinicians and academics we should delight in the learning we gain when we are wrong, recognise that whatever we produce is not really ever finished and have courage to be open to possibilities. A recent lesson learnt from co-designing our new stroke book [now 12 years old and currently the 8th version] reminded me it does not always help to look forward and plan but to look back in order to feel comfortable with yourself; there is no right way after all.