I want to cry. But I hear his voice. “Cut it out. Get to the point”. He was a legend and true Mensch.

In 2011, Michael woke up in hospital after a bowel transplant: “I had a bag attached to my body that was collecting—overflowing with—shit. For the docs it was about survival, the only thing I could think about was this bloody bag attached to my body.” [1]

In just nine years, he went on to invent a blue-tooth sensor device for colostomy bags, trained thousands of professionals, built a vast social media presence and founded Health 11, that turned the original sensor into the world’s first smart care platform for stoma patients, and includes the first smart bag. Health 11 has also pioneered patient peer-support programmes.

Michael was the inaugural e-patient in residence and executive board member at Stanford Medicine X, helped implement the first Skype clinics in the Oxford University Hospitals Trust, and was an ambassador to the Doctors 2.0 conference.

We met in 2013, after he had googled “patient leader.” In a cafe in Hertfordshire , we plotted the infiltration of the monolithic, professionally-centric NHS citadels. How could people with life-changing illness, injury, and disability be equal partners in power over decision-making? Better than that, we became buddies.

He joined a growing gang of patients, users, and carers supporting each other, exploring ideas around patient leadership—sharing stories of excitement and frustration. We would hold meetings anywhere we could find a free space to hang out—the British Library Piazza, cafe basements, meeting rooms (no pastries provided, we brought our own cake).

At that time, he was also dealing with other issues. He tried to get his prototype smart stoma bag accepted into the NHS. But the NHS effectively dismissed his ideas, was bureaucratically inept, and systematically unable to value what he brought. He pinned down the cause to a lack of patient power: “In the UK, all innovation is clinician driven, professionally driven; the role of the patient is not seen as useful. We are not valued in that way… it is shambolic how we are trying to scale up technology. The system only trusts health professionals.” [2]

He claims his ideas for the smart stoma bag were turned down in different ways, numerous times. He ploughed thousands of pounds of his own money into the venture, until he could no longer bear the UK health system’s inability to embrace patient-led ideas.

“I was getting nowhere and being fobbed off…. They sucked my brains. I said forget it.” [3] He moved to the US, as he found a Silicon Valley investor for his company. He crossed off the UK as an export market for the company. In the US, he found the platform for his “voice” too  and his wife and children moved there to join him.

His passionate truth-telling tipped towards an articulate impatience with the status quo and an illumination of what could be in terms of patient leadership. At a national inquiry into leadership in 2015, where we argued for patient leadership to the professional-only panel, he went further: “We cannot rest until there are Patient CEOs in every healthcare organisation around the world”. At the time, I thought he was insane. Now the role of Patient Director is a reality.

He was a bouncing ball of ideas and a joy to be with. The two of us wanted to found an “UnRoyal College of Patients” and  “School for Patient Entrepreneurs”. The latter would be a fitting tribute. Most importantly Michael led us on an untrodden path. He showed us how it could be done.

His kindness and passion are what got him noticed most—manifested as instinctive, effusive, almost child-like generosity. He was stoic and funny, bright and eager to listen. One of the greatest gifts he gave me was to organise an invitation to speak to Jewish medical students about mental health problems… at the very synagogue in which I had been bar mitzvahed.

His Judaism was central, and family his bedrock ideology. He thought of himself as “fortunate” to have such love and support. But he had a hard life. Diagnosed with Crohn’s disease at 12, he had over 20 operations before intestinal failure led to the need for a transplant (the 11th such operation in the UK).

Over the years he had five bouts of cancer due to his lowered immune system, a result of drug side effects, and a further transplant. There were mental health implications too: “living with chronic complex conditions with no chance of getting better, that is a huge psychological consequence…My mind and gut are totally related but never treated together.”

That “lived experience” was the fuel—as for all patient leaders—to making things better for others. He saw Patient Leaders having to be “three times as good to be treated as an equal…. Dealing with their conditions, then extra good to break into and change the system (then) as good a leader as those in the system – we need to be three times as good as those brought up culturally entitled to a leadership position.” [4]

I thought him invincible and unafraid. But he admitted: “I wake up every day unbelievably excited and unbelievably scared in equal proportions.” [5] He recognised the vast unacknowledged emotional labour of patient leadership—vulnerability is the thread that stitches together the unique courage of a patient leader. It is antidote to the armoured, split-off, heroic professional leadership style. And wellspring of humanity, connectedness, and collaboration that could save the NHS.

In the last few years, he was in and out of hospital for surgery. Yet still worked and made time for others. His death has left many in the patient world bereft, almost orphaned.

Michael would not be surprised at the casual dismantling of the fragile engagement architecture in the UK during the covid-crisis in its rush to command and control. We were only in focus groups and peripheral committee room tables, undervalued as people with wisdom and insight wrought from suffering, different ways to frame problems, innovative solutions, a blood-line to the heart of humanising healthcare… easy to dismiss when those rooms became small (virtual) command headquarters stuffed full of professionals. Patients excluded.

But he would also spot the opportunities. I can hear his voice: “Get back in there. There is work to do, just get on with it.”

David Gilbert is Patient Director, Sussex MSK Partnership (Central).

He is the author of “The Patient Revolution – How we can heal the healthcare system” (Jessica Kingsley Press, 2019). 

Further reading about Michael:

Aleks Phillips. Man who redefined the patient experience dies at 51, Jewish Chronicle. June 4th 2020.

Christina Farr Michael Seres, an influential patient who hacked together a ‘smart’ ostomy bag, dies at 51.

https://www.cnbc.com/2020/06/02/michael-seres-patient-who-invented-smart-ostomy-bag-dies-at-51.html#:~:text=Michael%20Seres%2C%20an%20entrepreneur%2C%20patient,He%20was%2051.

Denise Silber. One More Conversation with Michael Seres – A Tribute to Michael http://www.doctors20.com/tribute-michael-seres/

Nathan Seres, May 30 2020 Michael Seres had a simple ideology. Family ( a tribute from his son) https://www.11health.com/

Michael Seres. TedXNHS Talk. ‘What’s the most under-utilised resource in healthcare?’ https://youtu.be/Ifb1aavTa04

David Gilbert. Chapter One (2019) ‘The Patient Revolution – how we can heal the healthcare system’ Jessica Kingsley Publishing. That chapter is available here:

https://www.inhealthassociates.co.uk/blog/you-have-to-be-three-times-as-good-michael-seres/

David Gilbert ‘Patient Leadership is Dead. Long Live Patient Leadership’. https://www.inhealthassociates.co.uk/blog/patient-leadership-is-dead-long-live-patient-leadership-a-sideways-look-at-covid/

References:

1] The Patient Revolution, p34/5

2] The Patient Revolution, p41

3] The Patient Revolution

4] The Patient Revolution, pg 50

5] https://techround.co.uk/interviews/interview-with-michael-seres-founder-and-ceo-of-11health/