How can organisations support those living with sickle cell?

For Sickle Cell Awareness Month, our sickle cell Patient Voice Group discuss their lived experiences with sickle cell, shedding light on how organisations need to be considerate when engaging with patients. They emphasise the need for genuine engagement and transparency from researchers, while highlighting the importance of building trust within communities that have historically been overlooked. The discussion looks to the future, advocating for more personalised support, better treatment options and a stronger focus on the diverse experiences of those affected by sickle cell.

Marie Nugent, Community Manager for the Genomics England Diverse Data Initiative co-hosts this episode with Natasha Gordon-Douglas, sickle cell patient advocate for the Genomics England Diverse Data Initiative and Lead Mentor at the Sickle Cell Society. They are joined by Oleander Agbetu, who cares for her son with sickle cell, and is also a member of the Solace sickle cell and thalassaemia support group board, and Jayson Kupoluyi, sickle cell advocate and volunteer for the Sickle Cell Society.

The episode also features insights from some of the other members of the Patient Voice Group; Hazel Attua, Samuel Chuku and Zainab Garba-Sani.

The Patient Voice Group are a group of people affected by sickle cell who share with Genomics England their expertise, based on their lived experience, to inform our sickle cell programme within the Diverse Data Initiative.

 

"If we as parent/carers and advocates and all the rest of it can even make a little slight difference to someone’s care, that’s what I want to do. That’s why I’m here."

 

You can download the transcript or read it below.

Marie: Welcome to Behind the Genes. 

Natasha: I think the fact is that people do want to hear from patients, and they do understand that actually you need the patient’s voice in order to make things better, and not just be in a room where you’ve got all board members that think, “Okay, this is what is good for the patient.” No, actually, they’ve got the patients there to help support that voice, and saying, “Well actually, this is the reality,” rather than what you think might be the reality. 

Marie: My name is Marie Nugent and I’m the community manager for diverse data at Genomics England. I’ll be co-hosting today’s special patient takeover episode of Behind the Genes with Natasha Gordon-Douglas, who is a member of our sickle cell patient voice group. On this episode, we’re going to be speaking to two people who are also part of our patient voice group, Oleander Agbetu and Jayson Kupoluyi. Today we’ll be discussing what it’s like to live with sickle cell, and how organisations who wish to engage with patients need to be considerate of what is going on in people’s lives, and what good advocacy and support for patients who want to be involved in research looks like. If you enjoy today’s episode, we would love your support. Please like and share, and rate us on wherever you listen to your podcasts. 

Welcome everyone, thank you very much for your time today to talk about the patient involvement and engagement work we’ve been doing as part of our sickle cell and genomics programme at Genomics England. My name’s Marie, I’m the community manager for the diverse data initiative, and I am really involved in doing the sickle cell engagement work. I’m going to pass straight to Natasha now, who’s going to be my lovely co-host for this podcast. So, over to you, Natasha. 

Natasha: Thank you, Marie. I’m Natasha. I would say my background is nothing to do with the medical side. My background is in marketing and the corporate world. That’s how actually I got introduced by John James, because I actually got him into our workplace to do a podcast about sickle cell. So, you know, just – I’m working in an environment, which obviously – it’s about people understanding about my illness, so I actually got him in speaking, and then he mentioned about a project, “Oh, you might be interested in this.” So, that was kind of the introduction I got from John James. But as I said, doing patient work and engagement stuff was completely new to me, so this is my – I’m a rookie, I should say. But I feel like now after the two years, I know now, I understand [laughter]. But yeah, that’s kind of a quick background. And how I got introduced to Marie is from John James at the Sickle Cell Society. 

Marie: Great, thank you, Natasha. So, coming straight to you now, Oleander, I think it’s a bit different for you. So, you joined this particular group not too long ago, but from what I know, you’ve been doing this kind of advocacy work and engagement work for quite a while. So, tell us a bit about yourself. 

Oleander: Well, I’m a parent/carer of a teenager, young man with sickle cell, and I think I’ve been part of the Solace sickle cell and thalassaemia support group board for more than ten years now. And what we do is we support patients through our WhatsApp group, as well as through inviting different people to come and talk. We’ve had doctors, nurses, etc. And I have supported people who have called me personally to ask me questions, from advice, for help. Also written a letter to the hospital, which we are now working on with the hospital itself, to try and get things moving and make improvements for the patients who are actually patients there at Homerton Hospital and Royal London Hospital. 

Marie: And then over to you, Jayson. So, similar to Oleander, you joined this group fairly recently actually, but just tell us a little bit about the kind of work that you’ve done before. 

Jayson: My name’s Jayson Kupoluyi. My background is totally different from the sickle cell background. Because of the plight that I have with my health, I now decided that I wanted to make a change, so I – unbeknown to me – I didn’t know what advocacy was. I just – when I meet people, I ask them questions, and, you know, thankfully enough, they really try and help and support in terms of advising me and those kind of things. So, I took that advice on board, and through the years I’ve met fantastic people, i.e. Oleander and her son. I met her son during a trip – we took the kids to a trip for a week for self-discovery, self-awareness, teaching them how to cope, and probably to see where – you know, try to make them open up. 

So, I now decided to volunteer for the Sickle Cell Society and give them seven years of my time, in which I’ve met fantastic kids and fantastic people. And through that, I’ve learnt to be able to teach people and the kids under 16 – well, I’m teaching from 26 year olds down to 13 year olds on how to advocate for themselves in hospital now. I teach the adults how to fill in application forms for PIP. I also write complaint letters and help them deal with complaints. And I also – sometimes I have the chance, from Royal London and Queen’s Hospital, to enter and view the situation, and ask information from the patients, from the nurses, carers and things like that, to be able to compile my own findings. And all in all, it’s been rewarding, because I just wanted to give back. 

Marie: That’s incredible, you know, because something that we’ve been talking about more recently as part of our sickle cell patient voice group is this idea of advocacy, and I’m just reminded that I’m with a great group of people to actually explore this because of the experience that you’ve got, so this is wonderful. Now, you’ve all just said you’ve got varying like degrees of previous experience of being part of advocacy work. Natasha, I’ll come straight to you, what were your initial expectations as to what it would mean or look like to be part of like a patient voice group?  

Natasha: To be honest, very sceptical [laughter]. I was like, “What are they really going to – are they really going to take our voice on board, and is it just another tick box that they could say, “Okay, we’ve funded a group for you to – with sickle cell,”” and I was very, yeah, sceptical. But actually I would now advocate for everybody to be part of a patient voice group. I think it’s so important. And the collaboration that happens with all these different organisations as well that you open up your mind to – ‘cos I didn’t know – you know, especially for this particular project that we’re working on, you’ve got the James Lind Alliance, never knew this organisation existed. I think the fact is that people do want to hear from patients, and they do understand that actually you need the patient’s voice in order to make things better, and not just be in a room where you’ve got all board members that think, “Okay, this is what is good for the patient.” No, actually they’ve got the patients there to help support that voice and saying, “Well actually, this is the reality, rather than what you think might be the reality.” 

So yeah, I would definitely champion anybody regardless, even – yeah, you’ve got sickle cell, of course, but any kind of illness, if there’s any kind of projects, trying to get involved, to really be able to try and shape what can happen. Because, you know, I guess what we’re working on at the moment, the opportunities for development within sickle cell are endless. And yeah, it’s just being part of that steering group, part of that voice to actually make change, especially with sickle cell. You know, it’s one of the ones that has never had anything – hasn’t had change for I don’t know how many years - I’m going to give away my age, for at least 40-odd years, I’ll say [laughter]. But yeah, so from what I can see, it’s slowly now changing and we’re in that wave, and I’m so excited to be part of that. 

I know Oleander, so you with your son, you’ve obviously seen the kind of – if there has been change for you. I guess for me as a patient, I might see it slightly differently, whereas you as a carer, a parent, you might see it completely differently. So I guess for you, what would you say for a person who might be considering joining a patient group or a parent/carer group? 

Oleander: I too was sceptical at first, but at the same time I can say that I’m really happy that I have been involved, because it means that all the information that I find out about that might be relevant to other parent/carers, I can pass that on, and vice versa. Any questions that they might have or issues that they might be going through, I can also get those considered. And I just think that it can be quite sad when a patient goes into hospital and they are on their own, they don’t have anyone with them. And so for me, for example, when my son was in paediatrics, and I’m sure the two of you would also know that, the treatment is just very different to when you become an adult. I could see from my son’s face, he just was not impressed with the adult care at all. And he more or less says, “Mummy, I’m not coming back to hospital unless it’s really like a dire situation. I just don’t want to go back.” And that’s quite sad because really we’re supposed to be able to support our loved ones in hospital. When they need the care, they absolutely need the care. 

I actually spoke to a parent today of a young man in hospital right now. His PCA was failing, which is, you know, the pump that gives the medication, right? And they actually asked her, “Is he still in pain?” If he’s been put on a PCA, how can you ask that question? So, you know, it’s so good that she was there to advocate on his behalf. He couldn’t even talk. And, you know, I know for my son also, when he’s in really, really deep pain, he stops talking, just doesn’t talk. And if he’s there by himself, it’s a real issue. And so, you know, I think from that point of view, all of these kinds of stories are really important to bring to forums like this, so that people can understand that of course, yes, it first affects the actual patient themselves, but it has a knock-on effect for the families, and the carers and the people that are involved with that person’s care. So, if we as parent/carers and advocates and all the rest of it can even make a little slight difference to someone’s care, that’s what I want to do. That’s why I’m here. 

Marie: Thank you so much, Oleander. I think that’s a really powerful story as well, and it just shows so – I couldn’t help but think, as you were talking there, about this idea of – we use the word community quite a lot in this kind of engagement space, but I must admit, you know, I’ve been working in public engagement with health and research for well over ten years, and I must say that I really felt the sense of community in this sickle cell space, particularly with patients and the wider sort of community, and that feels like it’s a really important part actually. And it kind of speaks to what Jayson mentioned about, you know, he’s now reached this point in his own life where he wants to be actively kind of contributing back to the community. So, I’ll come to you now, Jayson. Again, what was your expectations about joining a group like this, and what were you thinking when you joined? And how has that maybe transformed now? Or potentially not? How has your experience been so far? 

Jayson: It’s been great actually, pleasant people, likeminded people working towards a common goal. When I first heard about this group, I said to myself, “Do I have space for another WhatsApp group?” It’s not because I don’t have space on the phone. It’s because getting calls in the middle of the night at the same time – and you can’t turn it down sometimes, especially if it’s in the family, ‘cos I have these people – I have - you know, it’s in our family and it’s very, very rampant. And when you say community, you can have a mother of your nephew, your niece call you, knowing fully well that you’ve gone through that, this sort of thing, what’s going on, blah-blah-blah, “Okay, this is what you need to do. This is what you need to do.” Then getting to the hospital is another ballgame, do you understand? And you just have to say, “Okay, you know what, if I take a moment of my time and say, “I’ll see you in the morning…”” I’ve had two incidents that I didn’t make it, and it’s a guilt trip to me, because I was thinking, “Hold on, if I had gone…” And then I was okay – if I wasn’t feeling okay then, yeah, but I was okay. I was just tired.  

And when I started, I was a one-man band, and I realised the last 20 years that it’s definitely not going to work, hence the community comes in. And the time I tapped into this community, I met people – “Okay, so, you could help me out, you could help me out, you could help me out.” And the more I meet people, the more my voice goes bigger, louder and reaches more people that I want to reach. So, when I first met Hazel, she was in pain, so I called her and I was like, “Madam, you don’t know me, but I know that you’re in pain, are you okay?” And she goes, “No, I just wanted to sit down.” I just sat down beside her, didn’t speak to her, just sat down, and she didn’t utter a word, but she came to a conference and I’m thinking, if you’re in pain, you know, okay, I’m the same – I just started explaining myself to her, “I have this, I’ve gone through this,” blah-blah-blah, and she was looking at me and she was like, “You don’t look like (inaudible 0:15:54).”  

So, meeting and coming to this group, my expectation was a bit elevated actually because, when I was speaking to Hazel, she said, “No, Jay, seriously, you need to be in this group because we need the other…” And I was like, “Not another one,” and blah-blah-blah. Hazel said to me, “Can you join the Solace group?” I was like, “Who’s in it?” She goes, “Oleander.” I was like, “Oleander’s good.” And everybody keeps on calling me, and I do appreciate that people want my advice sometimes, but this health is very precious to us. I am looking forward to greater things with this group. I am looking forward for us to reach some targets, some funding, some people out there, to be able to change so many things. And any time I see a sickle cell person in good health, no pain, no nothing, I give myself thumbs up. You don’t want to see anybody in that kind of pain, and people don’t recognise or have that empathy to share or say, “Just another sickler.” 

Sickler, that’s a word, hmm, I don’t like it. So, whenever I go to hospital, Queen’s or Royal London, they know, “Jayson, are you here to cause problem?” “As long as you answer the question, I will be fine. As long as we’re okay, I’ll be fine.” And, you know, we’re now friends. In the midst of adversity, we’re now friends.   

Marie: There is just so much I think in what you’ve just said, and I think that again something that I’m really struck by – so obviously, you know, I don’t come from any lived experience. I didn’t have people in my life that I knew that had sickle cell before starting to work on this as part of my job. And something that I’m really struck by is, first and foremost, from the No One’s Listening Report, the quite staggering evidence that, as a community of people, people living with and affected in some way by sickle cell are very neglected, and there’s all sorts of complex layers of like challenges and difficulties that people have to deal with, and it seems to come from all sorts of places and all sorts of kind of parts of life. 

I was just really struck by this really daunting situation actually to be put in. As someone who’s part of, you know, let’s be honest, quite a sort of – maybe quite far down the road in terms of direct benefits, like piece of work – so we’re here, I’m part of an organisation that is interested in supporting research and providing good quality research data, and research is a really important part of this whole system, but again it’s something that maybe will take five, ten-plus years before you’re seeing any direct benefit from in terms of the data that we’re creating.  

But something that I’m really struck by is this idea of, if we know that there’s going to be maybe a bit of a delay in the kind of benefits that we can bring to patients through the data that we’re generating, how can I try and build in as much benefit right now for the people that we’re engaging with and we can bring into this work right now? And that’s something that we’ve talked about and we’re about to initiate a bit of a project around exploring a bit further, but I just wonder if I can now come to you all and get your thoughts on what can organisations like Genomics England or other research based organisations – what in your view does being a good supporter or a good advocate for people living with sickle cell – what could that look like from a research organisation in your view? I’ll come to you first, Oleander. 

Oleander: I think a really massive thing is to support the removal of barriers. There’s so many people who would love to get involved with this, that and the other, but actually the barriers are there and the barriers are real. Even like from a personal point of view, the thing I was interested in attending, I can’t. It’s just not within my means. So, things like that are really important, because most people who are living with sickle cell, we are from marginalised groups. We’re from groups that are not known to be flushed, and we need the support from – you know, if you really want our help in terms of research and so on, we absolutely need your support and your help to provide you with that research and that help. So, it’s real. Giving someone a £20 voucher is nice and dandy, but actually if they’ve had to pay for whatever, accommodation or travel costs and all these things, they’re out of pocket before they even start. 

Marie: Yeah, this is something that we’ve been talking about recently, isn’t it? I know that organisations like ours do want to do better, but sometimes there’s just that not quite as good an understanding as to what these barriers really look like for people. Over to you, Natasha, what do you think about that? 

Natasha: There’s a couple of things I wanted to pick up on. One is definitely, yeah, the barriers. It’s funny, I was at a hospital this morning and I was talking to one of the consultants. He asked me the question, which I thought was quite weird, but he asked me, “Why do you think that sickle cell patients have to pay for prescriptions?” Like that alone, prescriptions, we’re on medication forever, you know, from the moment you’re diagnosed, which for me was at six months, so in my entire life, and you’re paying for prescription, that’s going to keep happening over and over, and you’re just – you know, there’s people, because of their sickle cell, they can’t work. There’s, you know, barriers of not being able to work. And then you’ve got potential – you apply and say your disability, and sometimes that’s not even taken on board either. So, you’ve just got these barriers in place that just make living day to day so exhausting, so tiring, and basically you’re fighting those barriers at every – you think you’ve passed one, you’ve come onto another. 

And I guess also the research side, which – it’s funny because I would say, when it comes to research, it’s fantastic, yes, that organisations like yourself are looking into it, but actually sometimes it’s not even – you can’t make the change where it’s going to matter immediately. It’s literally the frontline, you go into hospital and A&E, that’s your first barrier is trying to just get some pain relief or get any treatment. You’re sitting there for four hours. Four hours in pain for a person with sickle cell, that can really, you know, make things worse. And that’s the kind of – you kind of want the immediacy – like the frontline, those kind of things to change. And of course, yes, we do want more research and we do want people to take part, but it’s those things where you might not necessarily have the power to make those changes immediately that people will be willing to take part in research like this, because you can’t even just get the treatment that you need from the moment you step into a hospital. 

That’s kind of what I was thinking of as you are speaking about this. I’m like, you know, yes, this is great, but we just need sometimes just going into hospital to make it easier. Like what Oleander said, it’s unfortunate that the persons being asked about their PCA, if they’re in pain – well, what do you think? Like that’s just the basic [laughter], you know. It’s kind of like, how can you ask that question and you’re a healthcare professional being on the frontline? And that’s the worst. It’s the frontline staff sometimes which actually need the education. So, some of this research, it needs to go to education in these staff actually, you know. That’s maybe an area that needs to be sorted.  

Marie: For me, I completely have a whole new deeper appreciation for almost seeing people as the whole, how you work with the person. And it’s never been clearer to me - as I say, you know, in ten-plus years’ experience of doing this kind of work, it has never been clearer to me how important that is than now I work on sickle cell and how important that is. And I think that actually you’ve touched on a really important point there, which is that, you know, I know for sure that there’s incredible work going on through NHS England, through the inequalities workstream and in response to the No One’s Listening Report. There seems to be, you know, a huge increase in sort of focused action being taken to address a lot of these challenges that are being brought up in our conversation now.  

But actually, what you said, Natasha, did kind of really hit the nail on the head a little bit for me, which is that actually we kind of still look at this as kind of separate organisations, like, “Well, this is my bit and that’s your bit, so you stay over there.” And I think that something that we’re trying to start working towards through the Sickle Cell Society is actually how do we bring together a better sort of alliance of work and of people who are across research and healthcare, because these things feed into each other, right? So, how can we do better to sort of show that we are all aligned, that there isn’t just this one person or one group over here looking just at this little bit and then there’s a completely separate group, that we are all actually united in our, you know, intentions here to really improve the lives of people that are living with this condition. But of course, there’s just so much work to do, isn’t there? I think that’s another overwhelming thing, that everything needs to be better when it comes to sickle cell. 

Oleander: The thing I wanted to just add to this whole talk about what researchers can do in terms of supporting advocates, etc. Two things, understand that there is an issue for trust from our communities, because we’ve been burnt. And the second one is, we need transparency. So, be real when you talk to people about the information you’re gathering, what you’re going to do with it, how it’s going to impact the research, timetable of whatever’s happening, all of those things which will help people to gain more trust. 

Natasha: Yeah, Oleander, that’s so – yeah, I think definitely, that’s been echoed throughout this whole project, hasn’t it? It’s always about gaining that trust, because it is a case of, is this another where we’re going to have support and we’re going to be let down, or, you know, lied to, whatever you’re going to find out. And trust is a huge part of that, definitely, yeah. I think, yeah, definitely. Thanks Oleander for saying that, it is.  

Marie: Yeah, thank you all. So again just to say that I’m always blown away by just how generous you all are actually with what you say and with what you share, and with the messages that you’re ultimately trying to get across. And it’s very humbling, you know, to be able to work with you all, ‘cos you all are so incredibly passionate and driven, despite so many challenges, and it is nothing but inspiring. So, I can see absolutely why, you know, people living with sickle cell, for example, are called warriors, because you need to have that sort of fighting spirit to just keep going, and I have nothing but, you know, boundless like respect and admiration for people who are able to do that and contribute to the community in the ways that you all do.  

And I just think that again, you know, so talking now back to this idea of how research is set up, you know, I myself am part of an initiative that’s been, you know, initiated and only kind of guaranteed funding for this kind of iteration, for three years. It’s very difficult to sort of initiate and establish really good long-term relationships, and have like a longer term strategic sort of way in which you’re bringing in people and taking that long sort of like approach to building relationships, but it’s something that I’ve tried to be really mindful of actually, and to address a lot of the things that you just mentioned. 

You’ve heard us refer to other members of our patient voice group. Let’s now take a moment to hear from them. 

Samuel: Hello, my name is Samuel and I’m from Leicester. I have had the great privilege of working with some amazing people in Genomics England over the last few months, to hopefully one day be a part of something that takes down this condition that I struggle with known as sickle cell. Since John James of the Sickle Cell Society introduced me to Marie from Genomics England, there has been a door opened where the voice of a person dealing with the condition matters and holds weight, to help know what is required to further improve matters for people dealing with said condition. Hopefully, after reading the blog and hearing this podcast, you will know more about the work we’ve been doing, and feel as encouraged as we do. We don’t just want to stop here. There’s a long way to go, and we need all the help we can get to reach our goal together. 

Hazel: Hi everyone, I’m Hazel. I hope you enjoyed the podcast. Now we’re not done just yet. Keep your eyes out for our sickle cell and Genomics England patient takeover blog, where Natasha, Sam and I take you through what we’ve been up to and the future of genomics.  

Zainab: Hi, my name’s Zainab and I co-chair the Genomics England diverse data advisory board. I also have the pleasure of being part of the patient engagement group for this important piece of work. I’ve been a sickle cell advocate since before I even knew what advocacy was. As a child with sickle cell, I was exposed to different ways to help the community pretty early on, and have loved working with others to transform care for the better. Today, I hold a number of advocacy related leadership positions, including being a trustee of the Sickle Cell Society, chair for NHS England’s patient advisory group for sickle cell health inequalities improvement, and a member of faculty for Medscape’s committee on rare diseases. I also contribute to global sickle cell policy, practice and research. 

I’m super excited about the work we do with Genomics England because I think they’re a blueprint for what good patient centred work really looks like. My background is in health policies specifically related to research and innovation, so to see sickle cell being prioritised in this space is really special to me. We have an incredible opportunity to advance equity through research and innovation, especially related to genomics, and I myself am lucky to experience the transformative power of regenerative medicine. I’m excited for this group to continue to advocate for and enable better access for such incredible science. 

Marie: We’re very lucky to have such a wonderful group of people who are part of our patient voice group, and I hope you enjoyed meeting them. Just going back now to sort of what can be achieved, and if we, say, come back together in a year’s time, knowing the kinds of things that we’ve just talked about briefly that we maybe want to look at – we’ve mentioned things like doing more family sessions, looking at how we can engage young men in particular, doing what is needed to kind of give that really strong message about how you support people to be part of these kind of patient advocacy roles. But what would you really like to see that we’ve achieved together by say this time next year? I’ll come to you first, Jayson, this time. 

Jayson: Thank you very much. Going straight to the point, I would like us to have more one to one with the patients and family in terms of – mainly I think to move towards the male, because, you know, I’m a living experience of some of the things that’s happening, and put the awareness out there, and let them know that – not to scare them, but to give them adequate information to be able to arm and tool themselves for a better life for themselves, a better respite for themselves, and a better understanding of the situation. I know if sickle cell patients have enough time at work, at uni, at school, during their exams, they will achieve great results, and I would want that to be one of the forefronts of this campaign, to make sure that, you know, the male side – I do know a bit of the female side but I’ll leave that to Oleander and Natasha, but the male side of what they should expect, and how to – if I could put this in (inaudible 0:33:59), I am making myself a role model for them, because I have leapt over barriers and over so many expectations, and if I could do it, with the science and the support we have now, they can double it, they can triple it, they can do more. My journey hasn’t ended yet, but before it does, I want to tap into every organisation to hear more voice, to just give me five minutes to hear my voice. 

Marie: Thank you so much, Jayson. I can’t think of a better role model for young men who are dealing with this than you, so it’s brilliant to see your dedication to that. Over to you, Oleander, what would you like to see – if we’re here together in a year’s time, looking back on what we’ve done over the last year and what’s been achieved, what would you really like to see? 

Oleander: I’d like to see sickle cell actually being taken seriously, that people don’t make assumptions that, “Oh, it’s just a small, you know, blood thing, it’s nothing that deep, nothing that big,” whatever. Because the reality is, for a lot of indigenous people here, the majority ethnicity in this country, sickle cell is spreading because more people are mixing, more people have come over, refugees, economic migrants, etc, and mixing, and so they will find that actually it isn’t just a tiny minority of people. We’re told it’s 17,000 people in the UK, but actually that number’s going up. So, you know, it is a bit of a shame that it takes it to affect the ethnic majority in this country that anything would change, however this is the reality we live in. So for me, that’s what I would like to see, that sickle cell is taken seriously, that we’re not just stuck with one or two authorised drugs for people living with sickle cell, and actually one of them is not even a sickle cell specific drug. 

So yeah, we want sickle cell to be taken seriously, and so that people can actually trust the process and trust the people who are genuinely trying to research issues to do with sickle cell, so that we can make the difference that we need to make for people’s lives. 

Marie: Thank you, Oleander. That just reminds me that, you know, hopefully – so, one of the projects that you are also involved in that we’re doing is – and that’s been already mentioned, the James Lind Alliance and the Sickle Cell Society partnership that we’ve got, the priority setting partnership. Hopefully, one of the things that’s part of doing that is that we do create that sort of focused priority areas, and that’s really strongly centred on the voices of people living with the condition, supporting people with the condition, whether they’re parents, carers, healthcare professionals. So yeah, I completely agree, you know, really putting it on the map, taking it seriously, raising the understanding, raising it as a priority, I think that would be great to see in a year’s time for sure. So of course, last but not least, over to you, Natasha. 

Natasha: Well, Oleander has literally taken the words out of my mouth. That is exactly what I would want to see in the next year, and to me, it can be done. There should be no reason why it can’t be, with all the technology, with all the advancements that’s happening. There is no reason why sickle cell should not be leaps and bounds with the information, with the project, of getting this information from sickle cell patients. It should come to a point where actually no one has to suffer from sickle cell because, you know, the – what’s it called, the medication, that one that’s recently come out, that’s way overdue. I can’t even believe it’s taken this long to just come up with that one, you know. The stem cell treatments and what they give as an alternative, it’s not good enough basically. And, you know, we had this new one come out – I say new one, but this hydroxycarbamide, it’s like that wasn’t even for us. It was all by mistake that, “Oh actually, this might help sickle cell, let’s see.” And that’s what’s the afterthought, and we shouldn’t be an afterthought. It should be a priority.  

And yeah, having that priority setting that we’re doing with the James Lind Alliance – it’s funny, ‘cos I remember, we had a call in our patient voice – I think he mentioned – I think it was something about maybe the questionnaire that we were going to give people, or – I can’t remember the particular thing which I said to you, you’re having trouble – you know, we’re underrepresented, there’s no data on us for a reason, and you had a template, and it’s like this template’s not going to work, because you have to approach it differently. Like you have to literally rip it up and start from the very beginning, because what you’ve tried to do in the past hasn’t worked, or, you know, the majority of people, especially in the European world, it works for them, great, but you’re coming to an underrepresented community and you’re thinking, “Oh actually, we can just use that thumbprint and put it on this.” No, you’ve got to start again. 

And I think it brings the importance of actually taking part in things like this, is that without actually knowing this, you would have thought, “Oh actually, people just aren’t interested, you know. Patients don’t want to know. They don’t want to give any information over to us.” But it’s like, well no, it’s not that at all, it’s just that you need to approach us differently. You need to, you know, understand what actually we’re going through before you can then try and fix anything or provide information, or get, you know, medication advancements. Like these things need to be done and the groundwork first, and not thinking, “Oh okay, we can just put a little plaster and that’ll heal that.” 

So for me, definitely, more options when it comes to treatment. And, you know, that we’re not the minority when it comes to data. Because especially with sickle cell, it affects different people in so many different ways, and they’re just trying to understand, “Oh, why does it affect this person this way but it hasn’t done it in this person?” And it’s just like, great, you’re asking these questions, but now let’s move it forwards. Like let’s not keep talking and let’s start the action. And that’s probably one of the other things is, I want to see the action. It’s the action now. You know, of course, if you want us to talk, we’ll talk, you know. We won’t stop, and we can keep going. But ultimately let’s actually have some movement. Let’s have an action that you’re – I say you as in you as an organisation, but wider, everybody that’s part of the process comes and says, “Look, this is what we’ve been able to achieve.” And, you know, then you know you have been listened to. A bit like Jayson said, you know, still not listening. Actually, now you can say, “Yes, we’ve heard and now this is what’s come from it.” So yeah, that’s probably I think for me the biggest utopia is that actually sickle cell just won’t exist. It’s done. They’ve been able to sort it out [laughter], it’s no longer an issue at all. But yeah, we won’t get to that next year, but, you know, hopefully eventually down the line there is that cure or change that they can do. 

Marie: I think for me, it kind of just brings me back to this point that there needs to be a united front in terms of like dealing and addressing with this. And also importantly, it needs to come from the community itself in terms of setting the priorities of what is done now, what is immediately needed to be done now, what can be looked at maybe a little bit later down the line, as there’s maybe a bit more information, a bit more understanding, a bit more knowledge to kind of maybe base some things on. But yeah, every time I hear, you know, people speak about all the various challenges that, you know, of course, come from their own lived experience and having to see how this affects their community, and yes, there are steps being made in the right direction, but I think we all probably agree that we could all probably be doing more to just improve the way we’re uniting this work, and we’re doing it in a way that is really coming from the community themselves and saying, “We want this to happen now and in this way, and this is what we want you to look at addressing.” 

We’ll wrap up there. Thank you to my co-host Natasha Gordon-Douglas, and guests Oleander Agbetu and Jayson Kupoluyi for joining me today as we discussed engaging people with lived experience of sickle cell in research and advocacy. If you’d like to hear more about this, please subscribe to Behind the Genes on your favourite podcast app. Thank you for listening. I’ve been your host, Marie Nugent. This podcast was edited by Bill Griffin at Ventoux Digital, and produced by Naimah Callachand.