The Patient Revolution

Healthcare has made huge progress in the last 70 years, but how much further could we have travelled if we'd let patients lead the charge? To design any treatment or service without hearing the voices of those who use it, and knowing what matters most to them, is to set ourselves up for failure. And yet patient involvement is a relatively recent idea. When I trained as a doctor in the mid-eighties, we commonly wouldn't tell some patients what their diagnosis was, for fear of upsetting them. Others were labelled 'not for resuscitation' without any discussion or agreement from them. And yet as this book amply illustrates, there are huge gains to be made from telling patients the whole truth and letting them take a lead in their care, and to take as much control and responsibility as they feel willing and able to do. The patient leaders here tell inspiring and sometimes frustrating stories, but they are all united by a desire to learn from their experience and to improve the experience of those who follow them. We desperately need their help if healthcare is to cope with the demands placed on it. This wonderful collection of insight and experience is a great place to start. -- Dr Phil Hammond, NHS doctor, journalist and author of ‘Staying Alive – How to Improve Your Health and Your Healthcare’
At the beginning of my medical career, collaborations with service users barely existed. When they started to emerge, I have to admit I was sceptical. But as I grew older, and hopefully wiser, I started to wake up. Now I think they are indispensable. If anyone still needs convincing, read this book. I promise you won't regret it. -- Professor Sir Simon Wessely, President, Royal Society of Medicine
David has shaped the purpose of Patient Leadership as a Patient Director in an NHS Service. Bringing his full and authentic self to the workplace David has truly located the Patient as an equal in the planning and delivery of NHS care. There is much for us all to learn from his experience. -- Samantha Allen, Chief Executive, Sussex Partnership NHS Foundation Trust
'Extraordinary stories, extraordinarily well told' was my first reaction but that is not the point of this book. The point is that, sadly, the stories may be all too common. The people who have talked to David Gilbert about their experiences of healthcare have done us all a service, as has Gilbert in his sensitive presentation of their voices. We should all listen. -- Harry Cayton, former Chief Executive, Professional Standards Authority

A profoundly important book about a social movement of patients who are also activists and entrepreneurs and who can make a vital contribution to the NHS. Having read the book, I am left wondering: 'Why doesn't the system wholeheartedly embrace patient leadership?'

Perhaps it's all about power. A chief executive recently tweeted- without irony- that a red chair would sit empty during all executive meetings to remind board members of the importance of patient involvement. Please read this book, please reflect on it and please don't leave the red chair empty.

-- Professor Alf Collins, Clinical Director for Personalised Care, NHS England and NHS Improvement
This book is dangerously good. -- Richard Pemberton, Director of British Psychological Society
I imagine that many readers have had the experience of making their own diagnosis based on information on the Internet, which is part of patient empowerment so that people can arrive better informed at their doctor's appointment. This book goes further by sharing the stories of 13 'patient leaders' who have drawn on their own experience to impact the National Health Service with its procedures, protocols and the general assumption that professionals know best and that change must come from the top down. In many cases, the patients have really been through the hoops and have shown immense resilience to come out the other side. What emerges is a model of partnership, advocacy and engagement, humanising institutions operating impersonally by the book. Sometimes this involves a process of infiltration but more often sheer persistence in the face of resistance and inertia... This approach certainly has a role to play in healing the healthcare system and inspiring readers with its stories. * Paradigm Explorer *

The Patient Revolution is a powerful examination of patient engagement. Not only in its first-hand depiction of a broken healthcare system. But in its demonstration of the failure of traditional public and patient engagement. Focussed on the UK - more specifically, the NHS - it documents the hazardous fragmentation across the healthcare system and the acute disconnect with patients in a siloed approach to healthcare. At times, with dire consequences. On the one hand, in the documented experiences of inconceivable "bad care", to reuse Gilbert's words, that speak volumes of how traditional healthcare has failed the very people it is meant to serve. On the other hand, in the empty rhetoric of "patient-centric" approaches and "tick box" methods that have occupied decades of so-called patient engagement. As Gilbert writes, traditionally conceived patient and public engagement "buffers power by distancing patients from decision-making." Moreover, where engagement fails, ironically, it's attributed to "the lack of value that patients bring."

But it is far from a negative lambasting. As the subtitle title suggests - "how we can heal the healthcare system" - it is an inspiring, activating collection, animated by the wisdom of experience of its 13 Patient Leaders, who have not only suffered at the hands of "bad care", but, remarkably, are dedicated to changing the system - often without recompense, at times disempowered, co-opted or stripped of any professional identity...

It would be difficult to read this book and not be driven to activism. It signals a breakthrough in healthcare that moves beyond traditional engagement and uncovers the pioneering and transformative work of patient leaders in the UK. For engagement practitioners, this book helps understand questions we need to ask of any healthcare system - and not only limited to UK and the NHS - but globally. It also underscores how traditional engagement methods have failed, bottom line, by not valuing their most vital resource: patients.

* Sally Hussey, Bang The Table *
Compelling...there is much for us to think about when working with clients. * Therapy Today *