The eBook comprises chapters collated from blog posts and articles over the last decade during which I discerned how healthcare culture, systems and processes prevent change; also how systems purportedly helping patients have a ‘voice’ in decision-making actually prevent that happening. These twin tributaries – problematic engagement systems and potential solutions offered by ‘patient leaders’ helped us develop a novel concept of patient leadership (unheard of prior to 2012) – how those affected by life-changing health conditions could influence change.

Patient Leadership: A Revolution in the Making charts the emergence of that thinking, a set of ideas and principles that provide the foundation for change – they present a practical vision of how healthcare might be more focused on what matters to patients, through patients having influence over decision making at all levels.

Part One brings together a patchwork of early ideas that came to underpin the work – how people like us, affected by life-changing illness, bring jewels of wisdom and insight from the caves of suffering, how we have a vision of what matters to patients; and about the benefits of us being true partners.

Part Two is about patient leaders and patient leadership – what it is and where it came from. This is based on a longer article that provides a critique of patient and public engagement – what I have dubbed ‘the Engagement Industry’ – and the theoretical underpinnings of patient leadership.

Part Three is about being a Patient Director – the nitty-gritty of a role that had never before been tried – a ‘patient’ as an executive level salaried director. These articles chart a journey of hope, and at times despair. One blog post makes public a Board report showing shining progress, others illustrate me wading through treacle and struggling with re-emergent mental health problems.

Part Four focuses on the ‘emotional labour’ of patient leadership – an appeal for our work to be properly valued and supported; about the effects on our health and well-being. There is also the plea for us to be paid adequately. It is the dark underbelly of the work and flipside to being valued for what we bring.

Part Five explores how patient leadership could and should influence wider policy and practice. It begins with a look at how Covid affected our work in Sussex. It then ranges across different facets of the system such as policy making itself, national inquiries and workforce issues and how these might be affected by the application of patient leadership ideas.