Spreading the patient revolution

We found Victor’s writing so powerful and important that we wanted to share his work and spread his patient revolution more broadly in the UK. We’ve partnered with him and other health leaders to think about how we can use the principles and the lessons from Why We Revolt in our own context.

Although he writes mainly about his experiences in the US and Peru­­­­­, we were struck by how effectively and beautifully he articulated many of the issues in health and care in the UK.

It helped us see how easily our system has made it to be oblivious to the struggles of patients and the burdens put on them. When operating in such a system, people are unable to slow down, to listen, to understand.

This sketch of the ‘iceberg of experience’ was recently shared on social media by Anna Lewis, one of our collaborators, and prompted a wide response.

Reflecting on a year of ‘patient experience’ in my family. It could be much more sophisticated (if I could draw) but basically it boils down to this…. pic.twitter.com/hxGnoad80U

— Anna Lewis (@ThinkSpeakThink) November 12, 2019

Why it resonated with so many was partly because it depicts what we all know and feel: that our current system doesn’t have the capacity and capability to look beneath the surface and to listen to and understand patients’ concerns and needs.

The image reminded me of the adage “be kind because everyone is fighting a hard battle”, and as I thought about it further, I wondered whether in the context of health and care that mantra does not go far enough. Of course we must be kind, but we need to go further. We need a system that does not just assume that everyone is facing a hard battle, but also affords our clinicians the time to surface the battle-scars that patients struggle with and the goals they strive to reach.

It’s widely acknowledged that health and care staff are under unsustainable pressure. And yet within this pressurised environment, too often when I meet with managers and leaders, I’m struck by how much of their headspace is taken up dealing with organisational restructuring.

Victor’s writing offers a vision for a different system, and he describes the elegant care we want for our children, our parents and our communities.

Our health leaders are pressured to meet deadlines that ultimately serve to move needles that don’t address the cultural issues and the need to foster compassion, connection and caring.

Edwards Deming famously said, “a bad system will beat a good person every time”. Sadly, our health system and its culture are beating so many people who want to do the right thing, to slow down, to listen, to share decisions and power. Or, as Victor would say, to pause the ‘blur’ and see those we serve in high definition.

Victor’s writing offers a vision for a different system, and he describes the elegant care we want for our children, our parents and our communities. His stories help us see the costs of our current state and make tangible the suffering our system inflicts on real people.

It’s a reminder of how limited statistics and data can be in calling attention to the cultural issues we face; and that it is words and stories that call us to action most effectively. Why We Revolt forces us to question how we got here, but more than merely helping us describe or admire the problems we face, it also points to a way forward and solutions that come in the form of sharing power and decision making, and affording more time for connection and kind care.

Victor offers us an articulation of what is possible and a call to action: “I have chosen to speak of a revolution because reform is not enough.”

Many of us joined Kaleidoscope because our efforts to reform organisations from within failed and so we share Victor’s call for a revolution and hope that you will join us.