people, listen, steps, support, black women, research, campaign, public health, health, communities, inequalities, important, disparities, power, patients
Xand Van Tulleken, Rochelle Burgess, Carol Rivas, Clo, Tinuke
Xand Van Tulleken 00:00
Hello and welcome to Episode 3 of Public Health Disrupted – the brand new podcast from UCL Health of the Public. I’m Xand Van Tulleken – a Doctor, writer and TV Presenter and I’m prepared to do pretty much anything to start a conversation on public health. And I do mean anything, whether it’s editing journals on humanitarian healthcare or experimenting on my body for children’s television.
Rochelle Burgess 00:22
And I’m Rochelle Burgess - a community health psychologist, specialising in community-based approaches to health. I’m a Lecturer at the UCL Institute for Global Health and a self-confessed hippy here to talk about the importance of community, solidarity and social change to pretty much anyone who will listen. This podcast is about public health… but more importantly, it’s about the systems that need disrupting to make public health better. Join us monthly as we challenge the status quo, and ask what needs to change and why. Each week we’ll be joined by activists, scholars, artists, comedians, industry professionals and anyone else we can think of. We want as many people, from inside UCL and out, to join in our public health conversation.
Xand Van Tulleken 00:44
We’re calling this podcast Public Health Disrupted because that’s exactly what we want to do. We’re going to be breaking down disciplinary, sectoral and geographic boundaries to really understand the diverse and complex issues impacting our health. So in today's episode, we're going to be exploring the role of discrimination and structural disadvantage in the health inequalities experienced by marginalised groups of many kinds in modern Britain.
Rochelle Burgess 01:34
And the coronavirus pandemic has brought all of these sort of different realities and inequalities into urgent focus, because we see that those gradients of inequity of access and experience are front and centre and also looking at impacts of the pandemic, across societies in the UK and also all around the world. And I think today, what we want to sort of talk about is not the same old story. So you sort of feel like we're at the stage where we know that public health has a problem with inequalities that face as many groups as you can come up with in society and what would be part of our new vision for change? And what public health should be about is as much more than data, but more about solutions, and how do we make it so the world doesn't look like this in the future. That's what we want to do. We want a future that is better than the past. And what we want to talk about today is a big part of that.
Xand Van Tulleken 02:31
Perhaps we should introduce our guests. Today we are joined by two new Tinuke and Clo the cofounders of five times more. a campaign that seeks to address why black women in the UK have a five times higher risk of dying in pregnancy and in childbirth, in comparison to white women, alongside fivetimesmore, Tunuke is also the woman behind at mums and Tea a safe space online for mums to come together and support one another as well as a newly launched podcast. Clo works full time in the foetal medicine day assessment unit in the South London hospital, and is also the co chair for Lambeth and Thomas hospital maternity voice partnerships.
Rochelle Burgess 03:09
Our second guest is Dr Carol Rivas, Carol is an associate professor in social policy and programme evaluation at the IOE Social Research Institute. Her research aims to develop practical and theoretical understandings of vulnerability and social interaction to use with linked research outputs to support instrumental changes in policy and practice. Her focus is on so called hidden disabilities and on the intersection with race, ethnicity and migrant status. She has expertise in a range of multidisciplinary research methods and an interest and passion for innovation thinking outside the box. And much of her research and external engagement work really exemplifies this to a tee.
Rochelle Burgess 03:58
So can we start with your campaign Tinuke and Clo? Can you talk to us about what the campaign is and how you got started?
Thank you so much for having us, it's Tinuke and you forgot to actually mentioned that there's another guest here, which is baby Eden, who is 7 months old. In terms of five times more, we are a grassroots campaign, committed to addressing and changing the inequality of maternal outcomes and experiences for black women in the UK, it's five times more because black women in the UK are shockingly, five times more likely to die during pregnancy, childbirth, and a six week postpartum period afterwards, in the UK in comparison to white women. Now, before we go on, I'd like to point out to any pregnant women who might be listening to this that it's still relatively very safe to give birth in the UK and the UK does have one of the lowest mortality rates in the world. But there is a disparity between who is actually dying. And that's a big part of why we started the campaign. And it's also why we're very passionate about what we do, because this has been going on for a very long time, how it came about? How it came about was in 2017, I actually had a really terrible experience giving birth to my son, he's now three, I won't go into the details, but it was very traumatic. I had late diagnosed preeclampsia, which led me to be induced. And essentially, I just felt like I wasn't listened to by the midwife. And it led me to have an assisted birth, which in and of itself is not the end of the world. But my experience and the way I was treated, I just left feeling like nobody listened to me. And my pain was dismissed, and I wasn't taken seriously. So I decided to join forces with Clo, who I'll let her speak about what she does. But she runs a group called prosperities. Or should I say, a social enterprise called prosperities. With what I do with mums and tea, and listening to other black women in my network, a lot of women actually felt the same way. They felt like they weren't listened to, they weren't taken seriously, which led to them having further issues and complications and traumatic experiences giving birth. So when the embryo statistics came out in 2018, it was like, well, this isn't surprising, you know. And I just wanted to get to a point where I was like, you know, what, enough of this, this has been going on for a really long time. And I just feel like Enough is enough. So we, we've got our five steps, four, or six steps from others. We've done five steps with RCOG, to team up with them, to give steps for health professionals. We've done quite a lot in terms of lobbying, and getting our petition out to the government and asking the government to, you know, help us if you like, get to the bottom of this. And we are just very passionate about change. We don't want to keep talking around around in circles about something that is clearly a disparity and has been happening for a long time. We want tangible action, and we want it really quickly.
Xand Van Tulleken 07:15
Can I just pick up there? You mentioned the RCOG, that's the Royal College of Obstetricians and Gynaecologists. And it's To me, it's it's pretty extraordinary that a campaign that is new and small in terms of the number of people running the campaign, I believe that number is still two, is that right?
Xand Van Tulleken 07:35
That's huge. The fact that two people simply by listening to black women and black mothers have managed to take one of the Royal colleges of medicine and say, Look, come on, we need a campaign here. And they've got on board were they were they embarrassed, they hadn't done more sooner, were they excited to get on board? Can you just tell us a bit about that partnership.
So we approached a RCOG, to ask them if they wanted to create steps with us. Because five times more and the disparities is everybody's problem is just not a black woman problems. The best thing to do is to join forces with RCOG and come up with five steps. So we joined forces them and came up with the five health professional steps, which is got a lot of attention. A lot of people are happy with it, a lot of midwives are happy that the steps are there in steps that they're already aware of. But it's nice to get a little reminder. And it also puts mums at ease, because they know that you know something is getting down for them to have better health health outcomes.
Xand Van Tulleken 08:40
Was it easy getting their attention?
Yes, actually, it was. And they also made as part of their racial Task Force. As soon as we told them about the steps they were happy to jump on board and support.
Xand Van Tulleken 08:51
Can you talk us through the five steps for healthcare professionals and the different things that you're working on in your campaign with them?
So the first one is listen, and we say if a pregnant woman expresses concerns or fears that something is not quite right, or is in pain, take take time to listen her concern and anxiety without making assumption or presumption and that we all express emotion differently. So some people express their anxiety in silence because not everyone was I know, when I was pregnant, I was very silent about it, I didn't want to scream and shout and that some women do raise their voices. Listen to what is being said rather than how it's being said. Because a lot of the time it's seen that sometimes black women come across as aggressive. But you know, there's different ways that we show pain that different people show pain. And the second one is remove any barriers to communication or women but especially those with language barriers, it is important to make time to listen and talk with them. Take the time to explain in layman's term, what is happening and ensure that women are in control of their situation as much as possible. And one thing we want to do is we want women to feel like they are empowered and encouraged, and they are in charge of their own pregnancy. So removing all barriers, definitely give them that sort of reassurance that you know, they are in charge. And we say that they should use your own translation services if required. Remember that your body language and tone is vital to helping women to feel at ease. Number three is check you're providing clear information. After you have explained to women their option and made recommendations about their care, it is important that you recap or ask the woman to recap the information to check that she understands the choices available to her and that you give her a chance to ask any question and to give consent. And I think a lot of the time, when we go to like our maternity appointments or talk to health professionals, we're not quite sure of what they say. But we just stand there and kind of just agree and nod are heads I can talk my own experience. I was that mom that was in school and was too embarrassed, too shy to ask the midwife you know, can you please repeat? And I just kind of just kind of nodded and went along what she said. And at the same time if the midwife took time to build a rapport with me, or to even look at me, and she would have known that I had a blank look on my face, but she was probably well, not probably she was actually too busy looking at the screen in front of her to even acknowledge the fact that I was clueless. Number four, provide access to detailed documentation. And we said to support continued care by accurately recording any action treatment or medication you recommend or prescribe to women respond to treatment, if she declines any intervention, make sure that the woman and her designated support have access to written or online information that she can read on her own. And if a woman asks for another opinion, support this request. And I thought as health professional is really really important to document especially for the fact that I worked in maternity, I know how important it is to document that someone will come and you ask them have you taken any medication, have you been prescribed anything? And they will say yes, and and you ask them, you know, what you've been prescribed? How many times a day are you suppose to be taking them, and sometimes they actually can't remember or don't know. So to cover your own back as well. It's just better to write and document. And number five, which is my favourite one, I always say this with a smile - be a champion, support research and intervention in your hospital, to help to end disparities in mentality outcomes, inspire others by champion positive changes in maternity or affected unit, you can be a champion by doing each and every woman in your care. Equally, this will help to improve outcomes for all pregnant women. And this is when I talk about, you know, this issues everyone is everyone's problem. And that health professionals can do a lot by really championing to support black women and try to reduce the disparities. That's the five steps we have done with the RCOG.
Rochelle Burgess 12:59
Thanks Clo. I mean, when I was pregnant, I felt very much the same way sort of like a deer in headlights anytime somebody was speaking to me. And I'm also somebody who's trained in health and works in a health research space around things like patient centred care and the voice of patients. And I still sometimes struggle to find my own voice. And so I really, I think many women out there really welcomed the recommendations for these steps to sort of close that gap and communication and also forward looking towards the need for new and innovative types of research. And I think that creates a really nice opportunity for us to talk to our second guest to talk to Carol about some of her work with other marginalised communities across the UK, and how sort of research also potentially offers us this opportunity to create a different world. And I sort of wondered, Carol, if you want it to give us a bit of a whistlestop tour of some of your most exciting research and community based project linked to this idea of increasing voice and how we do it in health space.
Carol Rivas 14:01
Sure. Absolutely. Yeah. So I think the bottom line is increasing voice, getting people to be listened to and heard. So yeah, I really endorse what Tinuke and Clo are doing. I think it's great that I actually started focusing in research on ethnic minority groups, because both my parents are migrants. And when I was young, my father couldn't even speak English very well. So I was aware from a very early age of how he was not listened to. And so I started doing lots of research on chronic conditions and ethnic minority groups. More recently, I've also focused on disability and I found there's a lot of overlap, then that's because two of my children got diagnosed with disabilities, one with autism, and one with a mobility issue when they were young adults, and so I can see sorts of issues they have. So it's, it's all about listening in order to get care for them. In the 2000s I started doing this co production participatory research that you've already mentioned, Rochelle, and so this was before It was adopted in public health research and in medical research. And so we started off with patients with multiple sclerosis and gave them tools that were used in design and architectural design, which was to imagine a new future. So disrupting ideas by encouraging them to think not of health care. So we were looking at their journey from home to the Multiple Sclerosis clinic. And we asked them to actually imagine a journey from home to a hotel on holiday. And from that, we got some ideas that wouldn't have come up if they were just focusing on there journey to the clinic. So things like they needed, jargon translated for them, they needed to know where they could go and have a drink that was within walking distance when you've got multiple sclerosis. And so I then went on to look at problems of people with diabetes, who can't speak English very well, and found that often the nurses and GPS were very well meaning, but because they couldn't understand what was going on, even with interpreters, they would often explain for the patients, so they weren't listening to them again, they would say, okay, so you're, you can't exercise because in your culture, it's not very good to go outside after dark or something like that. So they'd make an excuse for them, that was really not appropriate, and they hadn't bothered finding out. And more recently, I've been doing some work on diabetes education programme for black communities in London, where we've used co production of participatory techniques all the way through from the very start to the very end. So they produced the tools that they would use in education sessions as well, helping us to design the research and education programmes. I think, at the moment, I just like to say one more thing in relation to what Tiuke and Clo are doing - they're talking about empowerment as well. And I think it's very important to draw that out that it's not just about hearing people, but making sure marginalised groups are empowered to be able to push up against being marginalised. So if the midwife turns away to look at the screen, it's about getting her attention back as well. And so in my research, we also develop some of the tools to do that. It might be things like apps, produce statistics that women can show, for example
Rochelle Burgess 17:24
I love that you've been doing co production before co production was a thing. And it just sort of really shows how long we've been struggling with these these ideas of the need to increase voice. And I think one of the themes that seems to run through what you've been saying, and Tinuke and Clo are saying is this importance of us thinking about power. And I just wondered, Carol, if you could talk for a minute about maybe within that sort of last study on diabetes in London, is what kind of power do communities have to work within these spaces and for empowerment to happen? Really, I sort of imagined that empowerment needs powers to come from somewhere. And I wondered if you could talk about how communities are bound up within that?
Carol Rivas 18:04
I think that's a really difficult question. Actually.Not sure how good an answer I can give. I think Tinuke and Clo are doing it very well so could illuminate more, but I think for the research that we've been doing, it is about enabling people to develop the tools that they are going to then use is making sure that their voices are in there throughout. And it's also, as I said, about giving them tools to feel empowered, you need to be able to talk to the people who are going to make the decisions. And as Tinuke and Clo have shown, you don't need to go between so that used to be the convention, I teach a module called evidence and policy and practice. And I used to say that you always needed to go to a unit to get lawyers on board and key decision makers, commissioners, but actually, what people liked Tinuke and Clo are showing is that you don't need that you just need to get people to listen in the right way. So yes, things like providing evidence from research and powerful stories from research can help communities to build up that power. And I think that things like the Black Lives Matter movement, and currently COVID have opened up opportunities for people to develop this empowerment, because I think communities in general people, ordinary people are getting quite shocked about these things that have up till now being quite hidden or quite ignored.
Rochelle Burgess 19:30
Yeah, I agree. It seems like there's this real push from below. That's possible now in ways that it hasn't been possible before. I think it would, might be nice, actually if Clo and Tinuke jump in and share your thoughts on this idea of power and its importance to what you're trying to do and what communities are trying to do in order to promote change.
Yeah, sure. Be happy to jump in there. I believe it's really, really important to allow, forgive me for lack of a better term, but allow the service users if you like, The people who are on the receiving end of the treatment to actually have a voice. Because ultimately, I feel like things before anyways used to happen in silos and the doctors and the nurses, and everyone else. I know they have everybody's best interests at heart. But it was all done up there and us as patients, we didn't have a clue. We were just on the receiving end of it. And that was it. But I feel like through the power of social media, and just being able to finally find our voices will not finally because there are people who have been doing this for a really long time, but I just feel like there's just been such a shift in the world since, you know, the murder of George Floyd and the rise of the Black Lives Matter movement that allowed campaigns such as ourselves, because we actually have been running prior to Black Lives Matter. But we've only really just been able to grab everyone's attention in the past few months, I would say, but yeah, it's really, really important. Because when you're spreading that message, and you're letting you know, especially in our case, with the campaign, you're letting black mothers know, kind of speak up, use your voice. If you can't speak up, let someone else speak up for you know, the steps that we have we having such great feedback from women, pregnant women who have now had their babies and said, Oh, look, I used your steps. And I think it's amazing, or, you know, I didn't feel like I could speak up before. And now I'm speaking up or I've shown the steps to the health professional, I met my midwife, I didn't feel like she was listening to me. And now I've actually shown the steps and and I feel like I've got some kind of control over what's going on. Because now we have that understanding. So when we hear things like that we're like, you know, it's really important to put the power back into the hands of the patient, wherever possible, and allowing them to not like just letting them know that you know, you do have a voice and do use it because it can ultimately change things. It we don't have to do things the way they've always been done. We do now have a voice and we can speak.I think Eden agrees!
Xand Van Tulleken 22:09
In listening to both of you and to Carol talking. What's striking to me, maybe if I think of your five points with the Royal College is that they are the basis of all good health care provision. Step one is listen, if a pregnant woman expresses concern, and it seems so straightforward, you've got a positive reception from the Royal College that you've immediately reached people that there is this appetite for tools to address discrimination that we all know exists, structure and inequality that we all know exists. But for lots of healthcare providers, I think they're apprehensive about bringing it up, they maybe don't have the language or the other way of dealing with it. And they may not even be aware that this is an issue. And it seems maybe I was feeling a bit gloomy when we went into this conversation. But actually, the way you're talking is so positive. And it does seem like these tools are very desired by the by the people you're giving them to is that the sense you get that there's an appetite within the healthcare professionals and the public health community at large for the things that you're giving them.
A lot of midwives and a lot of health professionals are like we didn't even know this was a thing we didn't even know that a lot of people associate maternal mortality and the inequalities we see with America, and it's something that's huge in America and not knowing that this is something that's happening right now in the UK as we speak. It's so important, it's so important.
And by offering, I won't say a solution. But with are six steps that we have for the women we are, you know, offering them support and giving them steps that they can take. And this is not us blaming the woman but that they can take just to feel empower for them to even advocate for themselves during their pregnancy. And then the fact that we you know, we joined up with the positive birth company to offer black woman their digital and hypno birthing package, which is worth 40 pounds, but 100 black women get it for free every month. So we're kind of offering a solution. So we're not just talking about a negative thing that's happening. We're gonna say, Okay, this is what's happening to black women. But here's what you can do, to kind of prepare yourself for pregnancy to make it less anxious.
Xand Van Tulleken 24:16
Carol, I think if you say to a healthcare professional, you know, part of your job today is to address structural inequality. In the healthcare system, a lot of people are already feeling pretty maxed out by their jobs. And yet the thing that you're asking them to do is listen and not make assumptions. So that that's at least one of the things that you're describing. Do you feel quite optimistic about the ability of, I suppose public health or at least the healthcare professionals that you're talking about to make positive change, not just within a generation, but kind of rapidly?
Carol Rivas 24:47
So yes and no. So I think
Xand Van Tulleken 24:51
I'm not trying to force an optimistic answer on you. Well, maybe I was but I shouldn't.
Carol Rivas 24:55
I think that they're mostly very invested. But so for example, if I take the diabetes study that I've just completed, we interviewed healthcare professionals. And a lot of them said that they were giving bad care even though they didn't want to. So their local communities, often very disadvantaged, had multiple jobs, work during the day worked in the evening, couldn't come to the clinic to get health care really couldn't focus on their diet. So as I said, it was diabetes, they couldn't focus on a good diet, because they were too busy just working, and the staff wanted to give them time to help them to self manage, but they were driven by incentivization. So it's quite a managerialist culture within healthcare. And so they wanted to get their QOF points - Quality Outcome points, I've forgotten what the F stands for, sorry
Xand Van Tulleken 25:41
Evidently none of us know
Carol Rivas 25:44
So they wants to get their QOF points, so that they could give basic care. And so they're what they were doing was actually just forcing the local population to come in to have their blood pressure monitored, putting pressure on them to do that, so that they could get money from the government. And that was an opportunity cost loss, because they then didn't have the time to do what they really wanted to do, which is listen to their patients. So there is work to do still on that. And one of the things I do in my research, therefore is to is not just listening to the patient, it's getting the patient and healthcare professionals together to work out solutions that are going to be feasible in practice, but that aren't going to be compromises for the patients. So I think that was something that's Tinuke and Clo just touched on as well. And what they were saying, it's got to be a discussion between everyone and equal discussion. And that's what this participatory co production work strives to do. It uses things like our best methods so that the healthcare professionals aren't in a position of power, they don't have the expertise and those methods. And so everyone is on an equal footing when they're then discussing.
Rochelle Burgess 26:48
I think that's such a really nice way to come back to that point around power. Actually, Carol, that's one of the things that needs to happen is also an equalisation of power between practitioners and service users. And so one ways we do some of the ways we do that is sort of creating positions of discomfort for practitioners and giving them a space that they're not really used to navigating. And another way that Tinuke and Clo highlights so well, there's the importance of creating bottom up empowerment for women by giving them tangible things they can use in conversation. So they feel more powerful in those spaces. But also something that is really important. And then coming out in both of those sort of last responses is the ways in which we need receptive political and social environments for that change to happen. And so COVID opens up a space to have different conversations about inequalities because it overlaps within these big political moments like the murder of George Floyd in the United States and the Black Lives Matter movement gaining prominence in that space and and discourses, and also the importance of wider health systems structures to make sure they're creating incentives in the right ways to open up spaces for participation that actually matter. And so I think this conversation is really highlighted for me the importance of thinking about power and all its different forms and manifestations and how that is one of the things we need to do in order to disrupt things is to be doing that work around power in lots of different ways through lots of different pathways and processes, establishing alliances where we didn't think that they might have happened before. This has been really great guys, we like to wrap up our our episodes by asking guests to think about a piece of an artefact such as a piece of art or music or poetry that that has helped disrupt your thinking or your perspectives. And it could be something this month, or it could be in your entire life but something that was the beginning of that disruptive thought and it would be great if you guys could share that with us just as we wrap up today. Tinuke you go first
I would say an artefact that helped me get to where I am. My two very different birthing experiences - my first my son 2017 was not great and which is what led me to the five times more campaign and starting that, but also I've given birth to my daughter literally, just in April just gone in the middle of the pandemic in the middle of lockdown, a really scary and anxious time and ended up having a really great experience. Actually, there she goes. She's stuck under a chair right now, on the move, but it was a really good experience for me because I felt empowered. I knew my body. I knew what to expect. I felt like I could safely give birth to my daughter because I had the knowledge and I felt like if I needed to. I could have spoken to the health professional in a way that would lead her to make me to make her understand what I was trying to say. But I didn't need to in the end, she was lovely. She was brilliant. She really listened to me. And I had a very, very, very positive experience giving birth to my daughter despite everything that was going on. So yes, those two experiences have definitely led me to feel more passionate about what I'm doing and where I am today.
Rochelle Burgess 30:21
Great. Carol, do you have one?
Carol Rivas 30:24
An artefact that has inspired me? Well, it's a photograph of my four sons. I have four sons, two of whom were from my first husband, who was Indian so two of them are half Indian, two of my sons are disabled. And so they have experienced lots of issues through their lives. And every day, they get me to question everything. Every day, we have conversations about inequality issues. And so they are the inspiration for everything that I do. And I take back everything that I do if I writing a grant application, I go back to them first. I listened to them so that they're my mini service users. They're my mini people that I need to listen to. And so they're my first sounding, my little pilot.
Rochelle Burgess 31:08
That's amazing. clo?
I have one but it's a bit cheesy.
Xand Van Tulleken 31:12
We love cheesy. Yeah, really love it. The cheesier the better
Mine is knowing that we are supporting and helping black women, especially when black women you know, talked about how much our steps have supported them and help them I think that really inspires me and Tinuke to carry on doing the work that we're doing, especially as this is we do this full time. And we actually do it because we are passionate about this. You know, we don't get paid by anything. We just do it because we actually passionate and really want to support women.
Xand Van Tulleken 31:45
I have to say that isn't very cheesy. I thought you were gonna say my Abba gold CD or something like that feels really sincere and meaningful.
Rochelle Burgess 31:59
You've been listening to public health disrupted. This episode was presented by myself Rochele Burgess and Xand Van Tulleken, produced by UCL Health public and edited by Cerys Bradley. Our guests today were Tinuke, Clo, and Dr. Carol Rivas from UCL.
Xand Van Tulleken 32:14
If you would like to hear more of these podcasts from UCL health of the public, subscribe wherever you download your podcasts or visit www.ucl.ac.uk/health-of-public/. This podcast is brought to you by UCL Minds bringing together UCL knowledge, insights and expertise through events, digital content and activities that are open to everybody.