C: Your book is made up of 12 different stories of patient leadership and what you call “going back into the fray” to make things better. It reflects on the fact that lots of efforts have been made to hear from patients over many years - why is patient leadership different - and why now?

D: From my own experience, I know that patients can help. Over the last few years, I have witnessed a groundswell of people like us and I believe we need a stronger collective voice, and we need to build opportunities to equalise power. I have also witnessed staff wanting to reach out, who are tired of tick-box approaches to ‘patient and public engagement’ but unclear how to change things. We all want new ways to come together, to hold difficult conversations in a safe way.

I get a feeling that all of us [the leaders featured in the book] are saying the same thing and that our diverse paths are charting similar territories. We are working for the future of the NHS, for a way forward that seeks solutions rather than builds on the volatility, polarisation and negativity that can slowly poison us. The people we celebrate in the book are the people who deserve to be leading the system – but the support, the opportunities, the value are not there. I wrote the book because our stories need to be heard and the system needs what we bring - our difference (the grit) and equality (the balm).

C: You’ve been a big part of this growing community for a number of years now. What made you decide to write the book?

D: This book has been brewing ever since I found myself in a locked psych ward alongside other damaged inmates. Alongside Lesley-Anne, paralysed from the neck down after jumping off a balcony after her dad died, who got me to play the guitar for her one evening. It was the first time for a long time that I felt I had anything to give. She could see what was good and bad about the NHS, knew how the ward could be less scary, which nurses were kind, why the meds trolley needed its squeaky wheels oiled – from the little things, to the vast swathes of improvement needed. We ignore people like Lesley-Anne at our peril. She died but I will not let her ideas die. She got me back on the road to giving.

Over the years I have become sick and tired of seeing many other service users, patients, carers and citizens feeling powerless. I see their kindness, passion, wisdom and insight - and I have seen their efforts and energies wasted time and time again. I have cried in toilets with bitterness, and know many others who have too. I have spent hours on the phone with people who have been ‘served up’ to focus groups, committees and events, in order to be patronised, marginalised or insulted.

I see the book as a way to celebrate those without the privileged entitlement of current leaders. An opportunity to challenge the way the NHS sustains the status quo on many, many levels – often insidious or almost invisible - through its structures, policies, and the very language and discourse it depends upon.

C: You were appointed the first Patient Director in the NHS. Can you tell us about that role?

D: The Sussex Musculoskeletal Partnership had the insight to create a new role - part of the executive team, alongside the clinical and managerial directors. They wanted someone who’d experienced a life changing illness or disability. The role is about having the authority to support patient centred stuff to happen. I oversee work on improving patients’ experiences, patient and public engagement, self management support, and patient facing communication.

C: Alongside your patient leadership work, you have been writing for many years [David has been poet in residence at the Bethlem Royal Hospital since 2017] and you read some of your poems at an event we had last year to launch our Social Movements in Health programme. Tell us a bit about what writing means for you and how you approached writing this book.

D: My writing feels like it has been gifted to me. So, it feels natural to use words to light the way.

I am proud of how we have written this book, trying to practice what we preach, talking to each other and listening to each other about how the chapters should be written, and what messages we want to articulate. How we do things (kindly) is as much at stake as the purpose. Come to think of it, kindness is the purpose. What else is there?

David Gilbert and Christina Cornwell will be in conversation in the company of many of the patient leaders featured in The Patient Revolution at a Nesta event on 8th October.