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OVIDcast by OVID Health, a global healthcare communications consultancy, explores current issues in the health and life sciences sector.
In each series, we explore a new topic, speaking to prominent figures within the healthcare landscape.
[00:00:00] Jenny Ousbey: Hello, and welcome to the Health Change Makers podcast. I'm Jenny Ouseby, founder and CEO of Ovid Health, a global healthcare communications consultancy, also known as The Health Change Makers. In this new series, I'll be interviewing experts from politicians and patients to tech founders and CEOs. All with a shared passion for improving the well being of people and driving meaningful change. Join me as I meet incredible Change Makers and be inspired to become a Change Maker yourself.
Well, hello, John, and welcome to the Health Change Maker podcast. Really excited to talk with you today. How are you?
[00:00:50] John James: I'm very well thank you Jenny, yeah, and I'm looking forward to talk to you as well. So, good that we're together.
[00:00:55] Jenny Ousbey: Great. Well, for those of you that don't know John James, I will do a short introduction. So John has been the CEO of the Sickle Cell Society, in the UK, a charity representing the needs of people in the Sickle Cell community. John has also worked in the NHS for decades before he became a charity Chief Executive.
He was the UK's first black African Caribbean CEO in the NHS. He has also worked as a senior civil servant and was awarded an OBE in 2018 for services to Sickle Cell and the patient community. So John has a huge amount of experience and Change Making mentality both in Sickle Cell but also in the realm of public health and the NHS and healthcare.
So I'm really excited to get under the skin of John, talk to you about your change making philosophy, who inspires you and what next on the horizon? So let's kick off by asking a bit about, I think often a lot of people come into healthcare by accident. So I'm really interested to know, was your eventual route to NHS CEO and health charity chief exec, was that by accident or by design?
[00:02:14] John James: Well, it's probably a bit of both, Jenny, because my mother was a nurse, and my uncle, her brother, happened to be a doctor. So he trained as a doctor, went to the United States, and did very well. So growing up, my mother used to say to me, look at Uncle Rupert, he's a doctor, you know, you've got to get into medicine, you need to become a doctor like Uncle Rupert.
There's no way that I was going to become a doctor. So it was always instilled in me as a young boy to have these role models like my Uncle and other people, and so that's where the link with health came from and my interest in health growing up because of my uncle, because of my mother as a nurse.
But it's true to say that I did step into the NHS by accident, so at the time there was some management trainee roles going and I thought, what am I going to do? And, I became a management trainee within the NHS. So, a bit of support from, my parents, my mother particularly, and my uncle and their careers in health, one in the United States, obviously, and my mother here in the UK.
But those things were instrumental in making me think about it as a potential career. Although not being a doctor, though, kind of, I thought it might be better to think about management and, rather than, clinical stuff.
[00:03:53] Jenny Ousbey: Did your mother reconcile herself to the fact that her son became a manager, not a doctor, then eventually?
[00:04:00] John James: I don't think she ever did, no, but, but actually, no, in fairness to her, as I graduated up in, the greasy pole, because as a management trainee, your career could take any direction. As I navigated my way up the management ladder. So I did my management training at the King's Fund and, you know, have a lot of respect and time for all that work that the King's Fund, put into me.
My mother then said, oh well, actually you're doing quite well in your chosen field. So she, she did reconcile in the end to say. Yes, well done. Yeah, so that was very positive.
[00:04:41] Jenny Ousbey: Good. And what was your thinking back to your career as you kind of progressed up the ladder and you became a CEO? Were there any moments in particular that were key moments for you? Moments where you really took away some learning that you've taken into, you know, subsequent roles?
[00:04:58] John James: That's a great question. I mean, I first of all I'm going to start by saying that I thought it was really hard and I thought it was really hard because of my color that was a factor that was a moment but nevertheless there were people who were really supportive. So people more senior than myself, and I mentioned, the King's Fund, there were people at the King's Fund during my training, there were other senior managers who really were supportive and helpful in terms of learning and development.
But in the same contrast of those people, there were people who would seek to trip you up or find it difficult to work with you. So those moments were really difficult. So I want to just, you know, thank my supporters. But the interesting thing, Jenny, that throughout that journey of the career, those characteristics of the supporters and the non supporters was quite consistent.
So, as a management trainee, as a middle management, because I kind of remember when there were organisations called Strategic Health Authorities, how unhelpful they were. It was just solve the problem and there was no support, there was no development. So, looking back, it was important for me to be able to have the kind of emotional intelligence to, deal with the ones who were really difficult or unhelpful or actually just making life more difficult than it needed to be.
So, and those were some of my reflections. A personal reflection was that I thought I graduated at the slippery pole quite early and young, so I was faced with challenges as a young manager and I always reflect, well, if I spent some more years would that have made any difference? So that was a personal reflection on my part. And then the final reflection was how lonely and isolating it was as a black Chief Executive. In those days, I was in something called the Less Than One Percent Club, so the moment there was loneliness and isolation, and also having differences. Differences by that I mean that, you know, some of the, things that some of my peers might want to do like going to the opera, you know, I don't have any issue about the opera, but it wasn't something as a young person that was particularly appealing to me or playing golf. I like golf, but I didn't play golf. So there were, there were those sorts of conundrums that meant that, I was seen as different, not because of color, but because of, you know, I didn't fit into the club, so to speak.
[00:08:10] Jenny Ousbey: That's really interesting about, so I had a question around, did you feel like the racism, because I think we can call it that, that you experienced, did you feel like it was overt or covert? And I think the other question is around that whole not being part of the club, because I think, and again, did you feel like that was an issue with class, as well as race, as well as age?
Because there's a couple of things that you've mentioned there. So, yeah, what would your reflections on that be?
[00:08:39] John James: Well, on the question of whether it was overt or not, there were examples of where it was clearly overt. You know, this is a true story, but I remember being told by a Chairman for a role that I applied for, you know, you're really good, John, but there's not many of you in this part of the world, and I'm not sure you would fit in here.
So on the one hand being told, yeah, you're really good, but actually, you won't fit in here because, you know, so there was quite clearly that element, and of course there were patients who in those days, you know, long, long before COVID, you know, you might have to deal with difficult complainants and, you know, sometimes it was, don't want this person dealing with my complaints.
So there were many examples, not just in terms of peers in terms of patients, in terms of clinicians. So every quarter, you know, when I say quarter, I mean, some people you would experience that, which is why I commend and I'm very grateful for the steadfast support I had from those people who supported me and let me be absolutely clear. Those people were white people. They, you know, that was really, really important, and the second bit of your question was on reflection, there was, you know, I'm from a working class background and I'm, there were many colleagues who also, from a working class background. So I think the issues were about more about my interests compared to the class interests of my peers, which were different.
So I think it was mainly that and that difference, difference means that people look at you as, well, you know, you're not doing the things that we would normally do. So, so for example, you know, and in those days, you know, there were people who would like to go to the pub and have a drink and, and in those days, that wasn't something that, I wanted to do.
So I think it was the norms of the peers and then having a peer, and it wasn't because I'm unsociable or, it wasn't that at all. It was just that I had different interests and different hobbies and, things to do.
[00:11:06] Jenny Ousbey: Do you think that a management trainee, for example, starting this year in the NHS would experience the same challenges or different challenges? Because I think that it's been well documented over the past couple of years that some of those challenges around patients refusing treatment from physicians who aren't white still happens at depressingly high levels, I think, in a lot of parts of the country.
So I'm interested about that and also interested as to when you're in a leadership position, whether the challenges are still the same or different, in your perspective.
[00:11:43] John James: I think in those days it was, you know, I was lucky. So there was an element of luck for me because I think the management training scheme was something that one had to be very lucky to get into. I think that today, that scheme is stronger and better than it may have been in those days, and by stronger and better, I mean, I think it would be more diverse.
I've talked to many other management trainees, so I think it's more diverse. But I still think from the management trainees that I've spoken to, some elements of discrimination is something that they've experienced, but that may be not through the scheme, Jenny, but through the placements that they may have been allocated.
So that would be my view about that, and I think it's important that, you know, schemes like the Management of Screening are inclusive, because the NHS needs difference in my view in it's leadership and leadership can't be everybody being the same. It needs difference and it needs some disruption and so I have very strong views about the leadership having experienced leaders who are great and experienced leaders who you would want to keep a real wide berth from. But those same people being regarded as, you know, top of the tree.
[00:13:16] Jenny Ousbey: So in terms of the leaders that you like to follow, and perhaps the leaders that you've taken inspiration from in your own leadership style, what would you say are the core qualities that you look for in a leader that you would follow?
[00:13:30] John James: Well, looking back at my experience, I think it was leaders who gave you the headroom to do the work and lead so that you weren't being micromanaged. They'll give you the headroom, but at the same time, it's this peculiar element of giving you the headroom. But actually supporting you and advising you at points, you need that support and advice, and even that means making a mistake. It wouldn't be being balled out or, you know, this is terrible. You know, it was always depends on what level of mistakes, but about learning, it's about learning. And I mentioned earlier about emotional intelligence. It's about managing those difficult situations and leaders who allow that to happen. It's about growth and development. That's how I would describe it. They're enabling, what they're enabling is your growth as a leader, your development as a leader and your characteristics about managing because, you know, if you're a leader in the NHS, it's hard. It's difficult. No question about that. So this emotional intelligence and being transparent, those are all things that I remember.
Transparency, particularly because working with a Chair and working with a Board, you know, you just have to be transparent in the sense that don't hide anything. Put it out there. It may not be the best thing, and it may be very difficult, but put it out there and work with people to resolve it. There's a principle that I learned very early, which was there should be no surprises.
No surprises whatsoever. And I've, you know, kept that with me. So I'm, I'm grateful to those leaders who allowed me the growth and also advised about where you should go, and what I mean by that is I remember the case where, the Chair said, well, I'm not sure, you know, you're good, but I'm not sure you'd fit in here.
You know, one of my mentors said, it's not a Trust you should go to. But what attracted me to it was, you know, so people knew, people knew. I mean, he didn't say to me that they're a bunch of racists down there, John, so avoid it like the plague. That wasn't the conversation we had. He said, well, you know, the culture there is, you know, maybe more difficult for you than it might be for me, John. But nevertheless, I went and I had that experience. So that tells you, and so I had good advice. I had good advice.
[00:16:12] Jenny Ousbey: Moving on to your time in sickle cell. So for people listening who don't know what Sickle cell disease is, it'd be great if you could explain that and explain how you came to work in sickle cell disease and what you think your biggest achievements have been.
[00:16:28] John James: Well, and again, it's, a journey. So when I was in the NHS if you accept that I was within the less one percent club, even as a Chief Executive, we understood that there would be areas with high prevalence of Sickle Cell where nothing was done. Nothing was done at all. It wasn't a priority. And I kind of wondered, yes, there are national priorities, which all Chief Executives must do, because it will be remitted from NHS England, but if you're in an area that there are also local priorities, and you ought to try to balance those two, but the fact that it was ignored encouraged me, because I had the ability to do it, was to commission some NHS Sickle and Thalassemia services. So, you know, I'm proud of that. Some of the NHS services that exist today have my fingerprints on them. So the fact that it was always ignored. So, you know, what kind of was upsetting was that you'd have an area of high prevalence. They would do nothing about Sickle Cell, but their annual report would have lots of pictures of diverse people because it's reflecting the diverse area, but in, fact, what actually they were doing to help those people was, another matter.
So that's the first thing I would say. That's linked to the journey of the NHS. The second thing I would say is that the Sickle Cell Society, I knew about when I was in the service, and people like Professor Dame Elizabeth Annie Onwu, Mischa Brozovic, and others were at the beginnings of trying to get better treatment and for people with sickle cell.
So I knew, and it was a time of the Civil Rights Movement and, you know, so equivalent to the George Floyd moment, you know, people were saying, well, why is this so bad? So, I was very pleased to see the Sickle Cell Society and other organizations trying to improve sickle cells. So that was all very positive.
And it's important just to say what sickle cell is. It is a genetic blood disorder that's inherited from both parents, and the haemoglobin is the thing that enables oxygen to flow to all parts of the body and like it says on the tin, if you have sickled cells, they get stuck in the blood vessels where they get stuck. There's no oxygen going to those areas and you get the most excruciating pain. That pain is so severe on most occasions that you require admission to hospital. That admission to hospital could last anything, at least the seven days. But you know, on average it might be two weeks and that's just from the pain. And It's treated with morphine and other drugs that you can't get over the counter, and there's also lifelong complications of the organs caused by sickle cell.
So it's a truly debilitating condition. It is the biggest genetic blood disorder in this country and it's shocking in my view, that the health inequalities are such as that the biggest health blood disorder condition in this country has been poorly funded, underserved and has so much high level of unmet needs. And I think the leadership that I've been able to provide to the Sickle Cell Society and the sickle cell community since I've been here is largely about raising the voice of that community, elevating the voice in places where it makes a difference, whether that's parliament, whether it's NHS England, and it's about providing the evidence to them to say, if this condition affected the general population or the caucasian population, there would be outrage. There would be outrage, generally outrage. So why are we not taking this seriously? So, I'm proud that in the time that I've been here, we have been able to raise our voice in a way that presents evidence to say that this can't continue, and I'm very, very proud of that. And I couldn't have done that without, you know, the Staff, the Volunteers, the Trustees, and the Patrons of the organization who have helped raise the voice. But it's had an impact.
[00:21:22] Jenny Ousbey: I think that's really interesting, because one of the things that really comes across, and I don't think it's unique to you, I think it's quite unique to people who are Change Makers, who have a change making philosophy. So, a lot of people, if they get angry or frustrated or see an injustice of some sort, they don't necessarily then go and take action.
So what I think is really interesting is, you know, ultimately, and I can still see it now, that that anger, that frustration around that, you know, this isn't fair, this isn't right, that this isn't getting the due attention that it deserves. You've translated that into doing something about it. So what's really interesting is why do you think you have that drive to channel, I suppose, anger and frustration productively, when I don't think everybody does that?
[00:22:11] John James: Well, again, and there's consistency in, sort of, my personality and characteristics. I mentioned emotional intelligence and I think that emotional intelligence has played a big part in channeling that, and it is anger. Most of the community will say it's anger. I saw an interesting stat from a survey that 80 percent of the sickle cell population don't think sickle cell is taken seriously as other like conditions, and that's the community saying that not me.
So I've been able to use the emotional intelligence to channel that in a evidential way. Number one, cause there is evidence. It's not something it's not just campaigning and flying the flag with the evidence of preventable deaths, of early mortality, of poor health experience and it's one of the rare conditions where discrimination due to race is a factor.
Not many people who have a condition experience discrimination as a factor, and the other point about this unmet need is that the vast majority of people who live with this condition, Jenny, are people who have heritage from Africa, the Caribbean, Asia, the Middle East and so forth. And I'm one of those people.
I've, you know, know people who have sickle cell, know families who have sickle cell. So there's a drive to say that in a leadership role, I can see improvements in lots of other areas. Cause as a Chief Executive, let me be absolutely clear as a chief executive, whatever area that I was covering I would want to do the best for the people of that area regardless of race so, you know, and this wasn't a kind of niche I'll just focus on on that. So why is it I always used to ask myself? Why is it my peers can't do the same? If I can do it, my peers can do it. So I'm one of those people and I know people who live with this condition. So it's about channeling it in a way, with evidence, that actually means that it can't be ignored.
[00:24:41] Jenny Ousbey: If you had a magic wand and you could change one thing to improve the lives of people with sickle cell, or even people who haven't been diagnosed with sickle cell yet, what would it be?
[00:24:53] John James: That's a good question because, it probably wouldn't be one thing because it's so undeserved in terms of its history.
[00:25:03] Jenny Ousbey: I might be a kind fairy and let you have more than one, so.
[00:25:06] John James: That's very good. Well, one thing definitely would be to have a wider choice of treatments available to improve the quality of life of people who live with sickle cell. And that, that, Jenny, is because there's only two licensed treatments for people with sickle cell.
So I'd wave my wand to have a huge range of treatments, including curative options. Curative options might not be for everybody, but including curative options, so that would be one thing that the magic wand would make a difference to people who live with sickle cell, and another thing is that I would make mandatory the training of healthcare professionals across the piece.
It's from our perspective as a Sickle Cell Society, patient advocacy organization, you can have great, really great, haematology, red cell services, sickle cell, thalassemia. Really good. But if that individual is sick or has to go into A&E and is being accused of being a drug seeker because they think they're after more morphine, then that's no good.
Or they're on a ward, a general medicine ward, where they're not being listened to. People don't understand sickle cell. All those things are sort of examples that lead to preventable death. So my second one would be to upskill the entire workforce so that they're trained and know that it's sickle cell they're dealing with, not somebody who looks well, who's complaining and shouting, and the complaining and shouting, I'll illustrate it with a good example. We had one case of somebody who was in serious pain, having a crisis, was very disruptive on the ward because the individual was screaming, it's the pain, they hadn't had pain relief. Security was called.
So that's the response. It's a person, you know, who is, causing disruption. So those would be two. If the fairy was so helpful to give me a third. I think it would be about investment in the services because red cells compared to white cells is not seen as the greatest career option. But I think those things are about investment in research investment in workforce.
So those three. If those three came together with that one, I can tell you now it would make a significant difference to the lives of people who live with this condition.
[00:27:50] Jenny Ousbey: Well, I think the, genie of the lamp usually gives three wishes. So maybe I'm a genie, not a fairy, but I think also on a serious note, I think particularly the number two wish, ultimately what we're also talking about, which is a huge, I mean, this is wider than sickle cell, isn't it? But that's racism.
That's not to do with medicine, actually. That's to do with society, and, you know, we're probably not going to be able to sadly solve that on this podcast. But I think that ultimately, I mean, that's the undercurrent that's running through, isn't it? So is that something that, thinking beyond sickle cell, is there anything that you want to change or do or be a part of that would help to tackle, I suppose, some of those underlying challenges that aren't to do with the clinical pathway or the workforce, but actually to do with, I appreciate, a much bigger, wider challenge?
[00:28:44] John James: Yeah, no, that's a, that's a great question. I think one of the narratives that we've been using, and I'll explain why we've been using it, is making it clear that sickle cell, yes, does predominantly affect people whose heritage is from Africa, the Middle East, the Caribbean and so forth. But actually, there's a growing cohort of white individuals who have sickle cell or sickle cell trait or carriers.
Because the reason that narrative is important is that it's, in the past, Jenny, it's been seen as, well, actually, this only affects black people, so it's not going to affect me, it's not going to affect my family, this affects black people, and that's one of the reasons the charity is not a wealthy charity, you know, because people kind of put things where they think that it will, you know, have an impact to them.
So change in the narrative that this is a condition that affects everybody, yes, there's a group who are mainly affected, I think is an important narrative to pursue because people's ears prick up when they say, really? White people have sickle cell? So there's a different dynamic about that. So I think that's very important so it's not seen as it has been for many years, that this is only something that affects black communities.
The other really important thing, and this applies to conditions that are not sickle cell, that is, and there's good work being done by the health inequalities team at NHS England, but addressing the wider determinants of health.
I mean, over 60 percent of people with sickle cell live in the lower quartile of deprived areas. So these are people who have other challenges, whether it's housing, whether it's education, whether it's food poverty, whatever it might be. But the more work we do on addressing the wider health determinants, don't only improve things for people who have sickle cell, but they improve things for other people, regardless of, you know, where they come from, or anything like that.
So I think those two wider strategic aspects are one that over time can change the perspective going forward.
[00:31:14] Jenny Ousbey: So thinking about what it means to be a Change Maker, and we've talked about emotional intelligence, we talked about disrupting the status quo, talking about how you channel kind of anger and frustration into something productive. Who have you looked to throughout your career as being someone who, they've got a change making philosophy, they've inspired you to achieve in your own career.
[00:31:39] John James: Well, as a young person growing up, I very much listened and admired Muhammad Ali in those days, and it was the time of the civil rights. I was a, you know, very young person, but he was authentic. So forget the sport, forget him being a great boxer, as a child, I remember he was talking about why he didn't want to go and fight in Vietnam.
So this isn't about him being a great boxer. This was him speaking up about somebody who, the experience of living as a young black man, in the United States at that time. So very much Muhammad Ali was there, and again, Malcolm X, you know, and people frown and say, Malcolm X, he was a bit of a firebrand though, wasn't he John? But the issue there, firebrand or not, he's speaking up and not everybody likes what he says. In contrast, And this was a person who I admired. It was Martin Luther King and Nelson Mandela.
And they happened to be all, you know, but, but as a young person growing up and having seeds of thinking about what it's like to live in the body that you are and what's around you, those were really, really important. So I certainly look back on that, and those were formative icons ground in me as a person.
But, you know, I think in my career terms, it's the individuals who supported me, who are all white individuals, and helped me in that growth and development. And that's why I started out by thanking them and acknowledging them, that they weren't boxers and they weren't leaders like the ones that I've mentioned, but they were leaders in a very modest, quiet, but effective way.
[00:33:42] Jenny Ousbey: Do you think that there are modern day equivalents of the Malcolm X's, the Muhammad Ali's, the Martin Luther King's, Nelson Mandela's, for a young black man considering, doesn't have to be a healthcare career, it could be in any sector, but do you feel like there is the equivalent now for somebody that they can look up to who speaks truth to power, who's an icon in that way?
[00:34:05] John James: I think so. I think for the young people, Stormzy speaks truth to power, but he goes beyond speaking truth to power and, looks to, you know, support people with their education in, you know, Oxbridge type of education. So, and Stormzy is a very young man. So I think that there are, I don't think that there are as many as the ones when I was growing up.
But I don't think they have to be black. So, you know, in the Blair years and I'm apolitical so I'm don't this isn't a political point but in the Blair years, you know, Blair was regarded as a good leader in you know whatever people might think of the Iraq war or not but he had distinctive leadership qualities, which I think at the time there was a saying that, it was cool, cool Britain as it was called or something like that.
So I think there are other leaders and people like that, you know, are looking at the whole country and have a global perspective. So I think it's about the vision that you have. So I've articulated in the vision that Stormzy might want to have for, you know, young people of this age and so forth. But if you're a leader that has a wider lens, like a Prime Minister, whoever that prime minister is, having a vision and being able to deliver on that vision, whatever bumps that come along the way, is important and delivery is important and the great British public, whether it's British public or not, are not stupid and they can, you know, they can see what's happening.
So leadership is also not taking people for granted and assuming that, you know, back to my point about transparency, that spin and those sorts of things are going to mask the real challenges.
[00:36:07] Jenny Ousbey: So when the time comes for you to eventually hang up your Sickle Cell Society boots, and I know you're not going to retire and go and play golf, so what's the plan if there is one in terms of the next chapter of your life?
[00:36:22] John James: Well, that's a good question. I've thought about it. So the next chapter of my life, so I was actually born in the lovely island of Grenada, where I still have family. So the next chapter is sitting on the veranda in Grenada, sipping a cool drink and watching the world go by. So there'll be an element of that, spending some time certainly with the family.
So there'll be an element of that. I'd like to keep the brain ticking. So some consultancy and non executive type roles. So yes, I've thought about it, and those are the sorts of things, but keeping one eye on sickle cell to see that it continues to progress not only here in the UK, but globally as well.
[00:37:11] Jenny Ousbey: Well, I look forward to receiving a postcard of you sipping your cocktail on the beach.
[00:37:17] John James: Well, I hope that you'd be in Grenada one day and I'll say, Hi Jenny, come and join me for a drink!
[00:37:22] Jenny Ousbey: I'd be very happy to do that and thank you so much, John, for your time. It's been an absolute pleasure.
[00:37:27] John James: Pleasure, thank you Jenny. Thank you very much.
[00:37:30] Jenny Ousbey: Thank you for listening to this episode of the Health Change Maker podcast. If you enjoyed it, why not share with a friend and subscribe so you never miss an episode.