Alf Collins: We still pay far too little attention to patient feedback, patient involvement, and patient leadership

I gave up on medicine very early in my career. When I started medical school in the seventies, it seemed to be a brutal business, with little thought given to what patients were feeling or what they wanted from healthcare. So a year after graduation, I bought a camper van and drove to Greece. And because I couldn’t think of what else to do when I got there, I drove back and began the slow business of resurrecting my career. I fell into pain management, a sub-speciality of anaesthesia, where it seemed to me that I could practice medicine as I thought it should be practised—with the therapeutic relationship at the heart of the work. I became a community consultant in pain management and thrived in my career until I retired from clinical practice three years ago.

I initially gave up on medicine because of what I perceived to be the appalling treatment of patients in the NHS, but of course things have changed over the last 40 years….haven’t they? The truth is we don’t know because we don’t have national datasets that track back that far, but my instinct is to say yes, things really have changed for the better. We do care about patient experience and involvement, we do actively seek patient feedback, and some of us act on it. But to reflect on just how much further we need to travel, read this book.

The Patient Revolution is written by David Gilbert; a writer, activist, campaigner, and leader who has spent a lifetime pushing us to make the NHS a better place for patients. David is worth paying attention to; he has personal insights, “jewels” he calls them, into the world of patient-hood and in this book he tells his story, as well as that of others who have experienced health services as they really are- because when it comes down to it, it is only patients who can actually tell us.

David writes engagingly and persuasively (he is a published poet) and while the book is highly personal, most of the chapters are reflections on interviews with other patient leaders. None of them tell entirely positive stories—all of them talk of their struggle to be heard, to be taken seriously, and for their advice and insights to be acted on. Taken together, the book represents a challenge—and indictment perhaps. How dare we not listen? How dare we not actively seek their feedback, their advice, their ideas, their challenges? Perhaps it’s because we (healthcare professionals) need to insulate ourselves from suffering and from stories of suffering in order to do our jobs at all. Perhaps it’s about power, hegemony, prestige. Yet aren’t we better than that? Didn’t most of us come into healthcare for the “right” reasons? If that’s the case, why don’t we actively seek to engage with patients?

All of the stories that David writes about make uncomfortable reading-yet they are in great part the stories of survivors. They are stories from people who suffered and whose suffering was compounded by the treatment they received from our NHS—from us. Yet despite all of that, these people want to contribute- they want to make health services better for others. Yet often their experience, their advice, their ideas are unheard. The jewels that they offer us are lost

If you are a researcher, invite patients to help you understand the questions you need to ask. If you are a health service leader, employ patients to become leaders and co-design every element of your service with them. If you don’t systematically seek and use patient feedback, you are ignoring your most vital resource. And if you haven’t yet discovered the impact of peer support, open your eyes.

With notable exceptions, we still pay far too little attention to patient feedback, patient experience, patient involvement, and patient leadership. This stark, compelling book demands our attention, but above all demands action. Please read it and having read it, do something about it.

Alf Collins is the clinical director for personalised care for NHS England and NHS Improvement with a background as a doctor, commissioner, researcher, and writer on all things person-centred.

Competing interests: None declared.