The Patient Revolution - why I wrote the book

I was asked to write a few hundred words for the publishers about why I wrote the book. This came in a summery and summary gush....

Because I am so weary of service users, patients, carers and citizens being powerless. Because I live alongside, work with and love the diamond-studded folk that surround me. I see kindness, passion, wisdom and insight in those they call ‘broken’.

And I have seen our 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 either to be patronised, marginalised or insulted.

I know dozens of friends who have to take days off because they relapse after turning up to events, seminars and whatever and having to doff the cap and who are repeatedly stripped of their right to be equals.

For me, the people I want to celebrate are those without the privileged entitlement of current leaders. I dislike the way the NHS sustains the status quo on many many levels – often insidious or almost invisible. Through its structures, polices, and the very language and discourse it depends upon.

But these people we celebrate in the book are the type of people who deserve to be leading the system. However, they lack the support, the opportunities, and are seldom afforded the value they deserve.

My writing is a fortunate gift. So, it feels natural to use words to try to light the way.

This book has been brewing ever since I found myself in a locked psych ward alongside damaged inmates. Alongside Lesley-Anne, paralysed from the neck down after jumping off a balcony because 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 had wanted to be a beautician, she could see what was good and bad about the NHS, could tell how the ward could be less scary, which nurses were kind, why the meds trolley needed its squeaky wheels oiled – from the little big things, to the vast swathes of improvement needed. We ignore people like Lesley-Anne at our peril. She died. I will not let her ideas die. She got me back on the road to giving…

Over the last few years, I have witnessed a groundswell of people like us. 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’ – we all want new ways to come together, to be round the table, to hold difficult conversations in a safe way. I write the book because we need each other – we need difference (the grit) and partnership (the balm).

I see staff groping for solutions to problems, but unclear how to change things. I know patients can help. I have seen it time and time again.

For all these reasons – personal and professional, creative and logical, individual and collective, for patients, carers and for staff, for the future of the NHS, for a way forward that seeks solutions rather than builds on the volatility, polarisation and negativity that poisons us slowly and is becoming systematic… and as I get older, all I want is what I have always wanted… to help make things better.

I am also at a point where I have sufficient professional confidence and credibility to believe we are reasonably on track with our analyses of what is wrong. I get a feeling we are saying the same thing, across all these chapters. And that our diverse paths are charting similar territories.

Finally, 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?

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The Patient Revolution – how we can heal healthcare, published by Jessica Kingsley Publishers is out on September 2019. There will be a launch event in October, which will be live-streamed.

You can order the book now here

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