Over the past decade, I have met hundreds of people like me who have been through stuff, who knew stuff, who wanted to change stuff. This remains the simplest definition I have been able to conjure for the notion of ‘patient leaders’. That is, people affected by life-changing illness who want to change the lives of others. Or, more poetically, those who ‘bring jewels of wisdom and insight from the caves of suffering’.

The movement began on a cold, rainy day seven years ago, Alison Cameron, Michael Seres and I travelled from Waterloo station to meet Anya de Iongh (who later went on to become Patient Editor at the British Medical Journal) in the basement of Winchester café. We talked for hours about what it was like to live with illness and why we were crazy enough to think our work might one day be worthwhile – not just for us, but for several thousand others. We had chosen a bizarre career route after being ill – to go back into the fray and try to change the healthcare system. We had not been blinded by pain; our eyes had been opened to what healthcare was like for the patient.

Despite our wanting to help – and knowing we can – we are habitually prevented from doing so by a system that has, until recently, not valued what we bring. The Patient Revolution describes what we have learned at personal and professional level. It leans on detailed exploration of the stories of a dozen allies who have tried to change the system in different ways – why they tried, what it is like for them to do this difficult but necessary work and their hopes, fears, opportunities and challenges.

Out of these stories comes a more distinct understanding of why the notion of ‘patient leadership’ is of critical value – what is its ‘unique selling point’ (USP) if you like. We know intimately what it is like to feel vulnerable and powerless, the effect of pain and suffering on lives, the primacy of healing relationships in care and what good and poor care looks like. Here have been brilliant, entrepreneurial, passionate people to work with, desiring purpose and wanting to connect their life and health wisdom. For a Jew, it has felt like my diaspora. Or my gang. I have felt like part of a group of misfits, mischievous and mavericks on a pirate venture.

I spoke with Jenny Catling from the Circus Team about my work as a Patient Director at Here and the role of Patient Partners in Sussex MSK Partnership.

I’m pleased to say that, since the podcast was recorded we have successfully recruited four new patient partners. The combination of vision, humanity and integrity are essential components of high-quality leadership – using it for the good of all and enabling others to do the same – equalising spaces and power, becoming true partners with other system leaders. Learning how to change the way the healthcare fortress works. The process changes relationships. With patients in the room, others are given ‘permission’ to explore. Dynamics change, trusted relationships develop people work together and move beyond ‘us-them’ conversations to dialogue. Shared decision-making emerges. Power shifts. True patient partnership would have deep implications for transparency, governance and accountability.

I’ve had thousands of cups of coffees with others since then – those people we then started to call ‘patient leaders’. We are still here. Sometimes hanging on with our fingernails. Sometimes on the decision-making stage with the bigwigs. Many times crying in toilets. Mostly fluttering in between, as well as relapsing. We have come a long way in a decade. Ten years ago the phrase ‘patient leadership’ did not exist and we still have far to go.

Recently, we interviewed people for the patient partner role for the Sussex MSK Partnership. One of the candidates feedback ‘I was gobsmacked. I have never been asked what I have learned during this period of pain and suffering, let alone someone asking me to bring those skills to the table.’ Morale in operational teams is lifted as conversations become about what can be done; they can feel that we are truly all in this together. This sort of work re-humanises healthcare – often reminding healthcare professionals what matters in the context of life, not just of illness – not just in the context of recovery, but discovery. Beyond ego towards a collective strength and belief in wider humanity.

David Gilbert is the Patient Director for Sussex MSK Partnership (delivered by Here in partnership with Sussex Community Foundation Trust, Sussex Partnership Foundation Trust and Horder).

He is also Founder of InHealth Associates, a network of specialists in patient-centred improvement and patient and public engagement.

David is a widely published author, featuring in British Medical Journal, HSJ and The King’s Fund. You can also find his own blog at Future Patient and his book The Patient Revolution: How We Can Heal the Healthcare System is available to purchase with a number of retailers. He spoke with Christina Cornwell of Nesta following its release and you can watch the interview here.