Michael Seres, a close friend and inspiring Patient Leader, died over the weekend. He was a mensch. I can think of no better words than this chapter about him in 'The Patient Revolution - How we can heal the healthcare system'
You can get sexy knickers and sewage plumbing, but you can’t get something to stop you shitting the bed at night. What if I could give the doctors the information they needed in real time? That’s when my brain got going.
In October 2011, Michael woke up in a hospital bed, covered in shit. Literally.
A bowel transplant had saved his life and he was only the 11th person in the UK to receive one. His cares should have been over. But another phase of his life and career were just beginning.
‘I had a bag attached to my body that was collecting my shit. It was overflowing and I couldn’t do a thing about it.’
The surgeon and other health professionals told him this was normal and he should get used to it. But clinicians don’t have to live with the consequences of a condition or treatment. It is the experience of the everyday that makes the patient leader a bit different: ‘For the docs it was about survival, but the only thing I could think about was this bloody bag attached to my body.’
In hospital, they had to empty the bag and measure its contents. When he eventually went home he had to drain his shit from the bag into a bucket or big bag. He had to get extra sheets for his bed, obtain pastes and sachets to thicken the faeces so it did not leak. Companies were sending him special rucksacks for the bag, bedsheets, sprays, creams, barriers... ‘My head was going, “This is just not normal, why does it need to be like that?” I was having conversations all the time about how much thickener to use.’
‘The transplant was supposed to give me a quiet life.’ His life since then has been anything but. He did his own research and, having a marketing and PR background, was determined to do something about it. He also describes himself as a ‘pain in the arse’ – unwilling to accept the status quo.
He used social media to connect with other patients to find out whether they were having similar problems. It was shocking to find others who suffered this sort of humiliation and discomfort in private: ‘I connected with 20,000 patients. Everyone came back to me and said, “Yes, get used to it,” or, “It’s not that bad.”'
He started questioning things – the default mode for a nascent patient leader: ‘Why does it have to be that way?’ And, fortunately, he had a surgeon who also became curious.
His first entry into the mindset of an entrepreneur though was triggered by his kids and a bout of boredom in hospital.
His family had just visited him on a Sunday afternoon: ‘My kids had wheeled my IV [intravenous] trolley down to the cafe. And had been blowing up surgical gloves and sticking them on a pin board. I was thinking – why did everything to do with hospital care need to be so damn grey and boring? And these stoma bags? We can do better than this. Why can’t you have your football team logo on it or a picture of your boss? You could shit on them. My daughter at that time was into Disney princesses – why can’t we do that?’
Having a business background and being naturally curious, he looked into the options. ‘Patients don’t stop being people when they get ill.’ Then he laughs: ‘But I never thought we would be where we are.’
Michael had spent much of his career in consumer product licensing; in other words, building products and brands for other people. The licensing of Who Wants to be a Millionaire?, wooden toys with kids’ favourite characters, t-shirts and apparel for football tournaments. Michael was always into building new products.
Now, the more serious task was dealing with overflowing faeces. Again, the idea came to him during the boredom and mundanity of dealing with the practical consequences of his lifesaving operation. He was at home, filling in spreadsheets for the doctors about what he had eaten, how much poo had come out and when and emailing them with the data. And by now the problems were not just overflow, but bacterial overgrowth, dehydration and infections.
For doctors and health professionals generally, these ‘invisible’ problems are not what matters. They may deal with the consequences, for example the readmissions and infections, but they don’t see what matters to a person’s daily life and they are not in a position to be able to prevent such things happening. And they don’t deal in shit.
His first idea was to design a Bluetooth sensor alert to check on how fast the bag was filling up: ‘We had to start somewhere. I believed that we could change the bag.’ However, the implications of such a device were enormous. If you could change the way of measuring volume, you could also get better at automatic data collection. And, if you can link that to remote communication with hospitals and professionals, that could avoid readmissions to hospital for dehydration: ‘What if I could give the doctors the information they needed in real time? That’s when my brain got going.’
He was also seeing a private healthcare industry focusing on the wrong things. He had investigated other so-called ‘innovative’ solutions: ‘The NHS will pay a company to plumb a tube from your bag into the sewage pipe so that shit can quietly drain away overnight.’ He then mentions an inspirational entrepreneur who has designed lingerie for people with gut conditions: ‘You can get sexy knickers and sewage plumbing, but you can’t get something to stop you shitting the bed at night.’
At the same time, he was asked to give talks by his transplant team, partly to help identify and recruit other transplant patients, partly as medical education – this seems a common route in for patient leaders (see the chapters on Sibylle Erdmann and Alison Cameron). He had a credible understanding of the system due to his long-term problems. He also was able to provide advice on how to look after oneself through diet and nutrition, and this holistic approach gained credence amongst patients and staff alike. Meanwhile, Michael started blogging about his story and work. He has subsequently used social media to develop global online communities of thousands of patients. His blog has over 100,000 followers.
Michael’s story is an illustration of how healthcare need is almost invariably defined through a professional and institutional lens. And thus there are significant blind spots, often to do with how one lives with a condition. Patients know what matters. But when they came up with solutions, they are easily ignored. Michael’s struggles as an entrepreneur were only just beginning.
Having initially hacked a sensor by purchasing the product online and using video tutorials, Michael quickly realised that scaling a good idea was a massive challenge. He found manufacturing partners willing to build a product. One of his stand-out memories during this period was of 300 units being shipped to an exhibition in Florida. The box arrived and Michael eagerly opened it to find that the batteries had been left on and nothing worked. Now a battery ‘pull tab’ seems obvious.
Michael won some awards. Tech London Advocates awarded him ‘new innovation of the year’ and the Science Museum featured his device as part of a Patients as Innovators exhibition.
By now, Michael was starting to ask more fundamental questions: he wanted to know who made decisions about whether the NHS would pay for his product. This opened his eyes to the NHS and its opaque decision-making systems, codes and behaviours. And the huge barriers it puts up to innovation, particularly ideas that come from outside the system. He drew on his professional interest in legal and marketing issues to start shining a light on the fusty world of innovation, regulation and licensing. It wasn’t a pretty sight.
‘What became very clear very early on was that nobody was going to pay for my product in the UK.’ He launches into the story of how he tried to get the NHS to support him in getting his product into the market and how it might be covered by the NHS. He discovered the ‘drug tariff ’ – a list of treatments and procedures that the NHS would pay for. And he tried to get his product listed. Eighteen weary, bureaucratically inept months later, he was still trying: ‘I saw all the other stuff they pay for, and thought, “Why not mine?”’
At first, there had been a Word document on a website to fill in. So he filled it in. Three months later, he got a note back saying, ‘Where is your health economics model?’ He then went back and said that the form had not asked for that and he didn’t even know what a health economics model looked like. He went back and learned about that and hired some people to help him do one. They built the product, put it on 80 patients, looked at the benefits and delivered the findings – and of course he had to raise the finance for all this. They showed a 30% reduction in costs in terms of drug spend and reduced hospital admissions. He waited for the drug tariff team to get back to him. And waited. And waited. He heard nothing for another six months.
They finally replied and said they now needed a clinical evaluation. He had assumed that this was part of what he had already done. So, yet again, he went back and did what they had asked, bringing in his clinical team to help. This demonstrated the benefits again and looked at how many people would use it and how it could be used in a clinical environment. And again it came from his own money. And another year went by.
Things were beginning to get on his nerves: ‘They made it very clear that you can’t talk to them; everything has to be done on email. This was bullshit. I was getting nowhere and being fobbed off.’ Like most patient leaders entering the world of healthcare policy, he was up against systematic barriers to inclusion.
For many – particularly when it affects one’s health (again) – this is the point at which people wave the white flag. Michael tried another tack. He challenged the tariff itself and questioned its relevance: ‘I said, “I don’t understand; you’ve got loads of stuff on the tariff.” And no one would give me a straight answer.’
At this stage, Michael was relying on the generosity of an initial investor who believed in what he was doing. The investor, a pharmacist, understood the challenges Michael was trying to solve. It was his initial money that allowed him to take a handmade hack and turn it into a viable product. With that seed money he started to navigate the regulatory landscape and began to see the gulf between the UK and US systems. And he was about to get a dose of the UK system.
He was told there was a ‘special way’ in which products like this might go on what was then called an ‘innovation tariff ’. NHS England, an emerging quango at that stage, told him that his sort of product was ‘exactly’ what the system was looking for.
He was encouraged to apply for a new initiative called ‘NHS Innovators’ as an entrepreneur who would then get support. But again this was a dead end. He didn’t get on to the programme. The goalposts shifted yet again. He was then told he didn’t have to get on to this programme for his product to be regarded as ripe for the tariff. But his hopes were dashed once more, and his product was not listed on the new tariff after all.
‘On the new list were episiotomy scissors, walk-in clinics and other stuff. I said, “What’s going on?”, and they said, “Sorry, we screwed it up. Could you help us rewrite the tariff? We’d love your input.”’ At this point in the interview, he leans back and rolls his eyes.
He was now experiencing another side of the patient leadership game – being asked to contribute his expertise for free: ‘I gave them all the information about what we were doing and our experience in the US, as we had started production there. They sucked my brains. I was told to apply again last year and then got another rejection, as it did not fit with key priorities. I said fuck it and forget it.’
Other patient leaders, faced with such problems, have little energy left to make their mark. Or are so isolated and ill, they give up. Such talent wasted. This at a time when the NHS is desperate for new ideas.
I ask Michael about what he has learned: ‘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. The penny dropped only recently. Put aside for a moment that we are financially bankrupt; it is shambolic how we are trying to scale up technology. The system only trusts health professionals.’
He has all but given up on the UK. ‘I can’t be bothered any more. I spent £80,000 on clinical trials in eight places in the UK, knowing that patients won’t be able to get it on the NHS.’
He refers to the complex architecture put in place recently in the health academic and research world – where new acronyms have to be learned, the world of AHSNs (Academic Health Science Networks), CLAHRCs (Collaborations for Leadership in Applied Health Research and Care) and NHS innovation and so-called entrepreneurs. ‘They are stuffed full of “clinical champions”. But there are no “patient entrepreneurs”.’
He apologises: ‘Sorry for getting too passionate. It is fine for me because I now have my own company and I am ballsy. I will get the meetings with high-up folk – I will share the story – but I will not be able to scale something up because I am not clinical. This is a perfect example of the old world colliding with the new world.’
Michael founded 11 Health (11 is a special number, because of Michael being the 11th person in the UK to have bowel transplant surgery). And he has had to leave this country in order to succeed. He turned to the US for funding after being turned down in the UK 43 times. He found a US investor – ‘a legend in Silicon Valley’ – who has subsequently become his mentor and friend. ‘That initial money came with two caveats: 1. Don’t run your company like a British company; 2. You have to move to the US.’
That is exactly what Michael did. Starting with one desk in a co-working space, Michael has now built a team of 35 based in Southern California. He has turned the original sensor into the world’s first smart care platform for stoma patients, which includes the first ever smart bag.
‘Now technology can help manage the shit and we can learn from what comes out of the body and exactly what to put back in. The company doesn’t see distribution of its product as something that should be any different to other consumer items. We will ship your medical supplies in the same way as anything else.’
At a strategic level: ‘My job is simple. Surround myself with brilliant people who are far cleverer than me and steer the ship.’
However, this is not just about technology. Michael’s greatest passions have always been helping others and how patients can help other patients. This has been boosted by his own experiences, where family and friends were the sole support – ‘the unsung heroes’ – and another ‘care gap’. He noted that patients as peer support workers are a hugely undervalued resource.
At 11 Health, they coach patients to buddy other patients and measure the outcomes.
He has utilised his understanding around peer support to found a business model for delivery of his products: ‘We have changed the way we deliver the service. We have 15 patient champions who have stomas, who have not been able to get back to work. They can work for us, for an hour, part time or full time. They go into a hospital and they link up with other patients, not to sell the product, but to see if they can help. The app we produce is full of educational resources.’
It is not a patient takeover. This is collaborative work. The doctors are engaged too: ‘We have doctors phoning us up to ask for help and to find a patient they can bring in to talk to their own patients about how to live post-operatively with a transplant.’
Meanwhile, Michael has harsh words for what happens in the UK. While he is treated almost like a celebrity when he walks on to a national event stage, nothing has changed behind the scenes. ‘The NHS continues to spout its empty rhetoric about “patients being at the centre” and about being at the forefront of innovation.’
‘I started looking at all the research and innovation coming through and there was another app announced recently about waiting times... They are all clinician driven, all insider driven, and I have this naive belief about patient centricity.’ He pauses: ‘It’s bullshit. It may be kicking off in terms of a few old-fashioned patient groups in GP surgeries or low-level engagement in hospitals, but there is no real power in the system.’
He mentions the role I have currently, as a patient director. In fact, Michael was the first person I met who had the idea of patients as chief executives. ‘Nobody is acting on it. There should be a patient CEO in every healthcare organisation. Until that happens, this movement cannot flourish. Everybody goes, “Yes, lovely idea,” and then nobody does anything.’
As someone who has had mental health problems and is interested in the emotional effects of physical health problems, I ask him about how he keeps his mind healthy. ‘There is zero understanding of mental effects of long-term physical health problems. If you have trauma, there will be inevitable one-off mental health issues to deal with. But if you are living with chronic complex conditions where there is no chance of “getting better”, that is a huge psychological consequence and it never gets addressed. Everyone repeats, “Are you OK?”, but nothing follows... My mind and gut are totally related but they are never treated together.’
Once again, he points out the love and support he has had: ‘I am lucky I have family and work as therapy and my escape. I look at those who do not have those other outlets or those who choose not to have those outlets; I see cases spiralling out of control.’
This is not just a personal issue; it also has huge implications for the prevention and integration agenda. He tells me about people who have had transplants coming in again because they have not been able to deal with the problems that led to them needing a transplant the first time. ‘There are two patients in hospital, one on kidney and bowel transplant, none of their issues have been addressed – drug abuse, unstable home environment, living conditions.’ Once again, it is patients who see the impact of siloed working at first hand, can point out its effects, could help come up with solutions.
Michael seems to have become a bit of a celebrity in some circles, often giving international presentations and being invited onto expert committees; he is a published author and a professional speaker. He is the inaugural e-patient in residence and an executive board member at Stanford Medicine X. He has helped implement the first Skype clinics in the Oxford University Hospitals Trust and is an ambassador to the prestigious Doctors 2.0 conference.
But his feet remain firmly grounded. And he still speaks truth to power. ‘For all the US health system dysfunction, they have recognised our innovations. In the UK, it is all about who holds power.’
‘We [patients] have as many qualifications, as much knowledge, as many professional qualities, just a different set of skills; for healthcare to move forward properly, everyone has to have a seat around the table, at equal level.’
He qualifies this slightly: ‘I don’t want to be around the table because I am “just” a patient; it is because I am also Michael Seres. I want them to say, “He also runs a business, understands strategy and budgeting, can contribute in the same way.”’
In other words, how he sees things is different but equal, like all others in this book. We are no better and no worse than a surgeon or a nurse, a financial manager or an IT worker. But the value must be equal. As he puts it, ‘I am not fighting for “us” above them, only for a level playing field.’
He sees a few, but not many, similar entrepreneurs and is pained by their struggles – he mentions Denise Stephens, founder of Enabled by Design, in particular as a ‘hero’. But he sees few examples of patient-led companies, though he makes an exception for PatientsLikeMe – a space for online patient groups that was set up in response to the personal experiences of its founder.
Unsurprisingly, he already has eyes on the next step: ‘If I have the time and the money, we could bring together a patient resource. I want a patient CEO in every healthcare organisation. And I want my company to start an incubator for patients as entrepreneurs.’
I delve backwards as well as forwards. What in his background has made him the way he is? He was diagnosed with the incurable bowel condition, Crohn’s disease, at the age of 12. It was only following over 20 operations and an intestinal failure that he had the transplant. Michael has also been a cancer patient (twice) due to his lowered immune system, a result of drug side effects.
‘My healthcare journey is relatively unremarkable, because every one of us has a story.’ I am well versed in Michael’s humility. We have been friends for a long time now.
His diagnosis of Crohn’s disease followed two years of being told he was faking his stomach aches: ‘An irony, because I wanted to go to school. I was good at sports; it was all I wanted to do. I was one of the youngest cricket captains they had, played for Middlesex schools, captain of Camden schools, rugby scrum half.’
Back then Crohn’s disease was a rare thing; now, IBD (irritable bowel disease) is well known. It was often treated with high-dose steroids. Not pretty for a kid. He was a ‘geeky, awkward teen’, but now had to deal with a bloated face, rashes and extra bad moods. He needed surgery at 14, and when he came back to his school in north London, he had his first real taste of discrimination. Why was the seat next to him at assembly left empty? It seemed the staff felt his disease was contagious.
Do patient leaders have an inbuilt sense of the unfairness and injustice of life? Is it intertwined with their personality or their journey? Their family life or their healthcare experience? ‘I always had a mouth on me but I was basically a good kid – compliant.’ But that critical mind was there from the off: ‘I could challenge and question and found my voice on the cricket field.’
His teen years were littered with health problems: ‘They knew me at the Royal Free. “What are you here for this time?” the receptionist would ask. I was the one who emerged from the scrum with a broken wrist... I didn’t know then that Crohn’s could affect bone density. We always thought it was sporting accidents. I was diagnosed with ankylosing spondylitis, was in a lot of discomfort – it became a joke. I spent a year on crutches with ligament pain.’
Frustrated by his school’s attitude and losing out on learning through his breaks in hospital, he went to a tutorial college, Albany College, to make up for his missed O levels. And there he found the sort of support, enthusiasm and encouragement that had been missing from his schooling thus far.
Michael is big on support. He weaves that message through everything he says. And Albany College offered him everything he needed to take his frustrated, opinionated, curious mind that step further. ‘The amazing English teacher came to teach me at the bedside in hospital.’
But that didn’t mean he agreed with anyone. ‘I loved the debate, the intellectual jousting, and of course, because of what I had been through, I wasn’t always willing to back down... I had two brilliant teachers for law and politics who left their mark – in the case of politics, their left-wing mark! I always took the opposite view. I also enjoyed the case law; health was always a big thing – we talked about the NHS, constitutional and social welfare stuff. I was fascinated by inequalities.’
He also had an eye for business that would help later on. His family was in the ‘schmutter business’. His father, a second-generation East End Jew with Russian roots, was a clothing manufacturer and Michael spent his summers helping out at a bristle factory owned by his grandfather on his mum’s side. ‘Only a handful of my grandparents’ family survived the holocaust.’ He pauses. ‘Summer was great. It was time with grandpa, with dad. I enjoyed the business background on both sides of the family – going to the factory. It always led to Blooms [the famous Jewish salt-beef sandwich makers]. I remember the buildings and people vividly. One aunt was a designer, the other did the books; it was a real family business – loved it.’
So, perhaps he had talents to fall back on? Perhaps his curious mind and professional interests made him ripe to re-enter the healthcare world with a whizz. He certainly had the support, which is crucial for most of us. Even so, what he did was and is remarkable.
Like me, he was a good sportsman at school. Like me, he supports a rubbish football team with a decent pedigree: ‘My cousin took me to see Queens Park Rangers at Loftus Road in the early 1970s when I was six and we lost to Liverpool in the league by a point. I am still waiting to see us win a trophy.’ Maybe our frustration comes out in our work!
Having listened to his story for a couple of hours, I ask him the question that haunts me: why bother? ‘Because we care and because it’s not right, and I think we do it because there is a bit of activism in us, I think we all have a commonality to different levels, a feistiness, a cause, a belief in trying to right an injustice in a way.’
He has a final thought: ‘Patient leaders have to deal with their own conditions, they have to be extra good to break into and change the system and they have to be as good a leader as those who are in the system – we need to be three times as good as those who have been brought up culturally entitled to a leadership position. We have to be three times as good to be treated as an equal.’