Patient Revolution

David Gilbert was the world's first Patient Director, at the Sussex Musculoskeletal Partnership, and one of the pioneers of the concept of Patient Leaders. He is an expert in patient and public engagement at local, national, and international levels, and has 35 years' experience working with the NHS.

• Preface: The Tale of the Jewel MerchantsIntroduction1. Michael Seres - You Have to be Three Times As Good2. Kate James - Making the Connection3. Dom Stenning - Jedi Master of Involvement4. Sibylle Erdmann - Transformers5. Alison Cameron - Crumbs from the Table6. David Festenstein - Walking the Talk7. Patrick Ojeer - Being Believed8. Karen Owen - HealthMaker9. Trevor Fernandes - The Tactics of Infiltration10. Lesley Preece - Tough Work11. Ceinwen Giles - The Amazing Fall from Grace12. Dominic Makuvachuma Walker - Dealing with Power13. David Gilbert - Outsider-Inside

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.