Person-centred sickle cell care: lived experience and participatory research

In this episode of In Conversation with LSTM, alumnus Dr Motto Nganda is joined by Ayo Akinmolayan, who brings lived experience of sickle cell disease, and Evelyn Matongo, a psychologist leading participatory research in Zambia, to explore what truly person-centred sickle cell care looks like in practice. 

They discuss the physical, emotional, and social realities of living with sickle cell disease, the importance of mental health and psychosocial support, and how lived experience should shape both research and health systems. The conversation also highlights how participatory approaches are bringing patients, caregivers, communities, and clinicians together to address stigma, improve care, and co-create locally relevant solutions across sub-Saharan Africa and beyond. 

Transcript

Hello everyone and welcome to the LSTM in Conversation podcast. My name is Doctor Motto Nganda and I am a International Public Health Research Associate at the center for Capacity Research here at the Liverpool School of Tropical Medicine, where I work on participatory health systems research and global health innovation. In today's conversation, we are exploring person centred sickle cell care, the role of participatory research and what we can learn from collaborations across the Global North and the Global South. We'll hear perspectives from both lived experience and from clinical and public health research. I am joined today by Ayo Akinmolayan, who brings invaluable lived experience with sickle cell disease as well as Evelyn Matongo, a psychologist leading our participatory research cycles in Zambia as part of our patient centred sickle cell projects in sub-Saharan Africa. I would like to give, um, a minute or so to each person to please give us a brief introduction of yourself. Please tell us who you are and how you are involved in sickle cell disease and sickle cell disease research. Hi. Ayo Can I start with you, please?

Of course. Um, yeah. My name is Ayo Akinmolayan And a brief understanding about me is just. I was born in Nigeria, grew up born with sickle cell as well, grew up with sickle cell and live in the UK since I was sixteen and have been since and have had sickle cell since.

Thank you. Ayo. And, uh, Evelyn, could you please tell us about yourself?

I am from Zambia. I work with ah PACKS team here in Zambia. So we are working on sickle cell disease project, and my role is basically to engage the community to come in and bring in, you know, interventions on sickle cell disease. I am a public health specialist with a focus on mental health for both caregivers as well as adolescents and children.

Thank you. Evelyn. I just want to emphasize she said she's she works in the PACKS project. PACKS is patient centered sickle cell disease management in sub-Saharan Africa, which is a consortium of institutions based in the UK, US, in Ghana, Zambia and in Nigeria. And Evelyn is based in Zambia. Evelyn, for those who don't know, can you tell us what sickle cell disease is and how it affects individuals?

Sickle cell disease is actually an inherited blood condition and it affects the red blood cells. So the normal red blood cells are round and they are flexible, which allows them to sort of travel or move through a small blood vessels to deliver oxygen to different parts of the body. So now when one has sickle cell disease, the round blood cells become sickled. They become like a crescent shape or a banana shape, and this makes it difficult for the blood to move through the body. And because of this, it causes severe pain to the patients that have sickle cell disease. It causes a lot of tiredness. It causes some infections and sometimes it could actually cause some damage to the body organs over time. So this in itself affects patients with sickle cell disease and also those that are caring for them.

Evelyn has given us some details about what sickle cell disease is. You are someone with lived experience. Could you please give us a brief description of how you've lived with sickle cell disease so far, and how you've been involved in sickle cell disease research and other sickle cell disease activities?

In terms of my experience now, basically, I was born with sickle cell in Nigeria to a family of seven. I had three sisters and lost two of them to sickle cell. So, like Evelyn has explained, this is an illness or a disorder that could result in death if not well treated. Now, um, one of the thing is like being back in Nigeria, the knowledge there isn't as great as it is here. There is a lot of gap in knowledge because when you go into hospitals, I remember when I was little, it would be a thing of where you have to literally buy blood every time you go in and whether or not tests are done. I have no idea, because at that time my own role was just mainly to just get the blood About and it is needed. So losing two sisters to sickle cell at the age of twenty one, my parents decided it might be better for us to look for a better treatment. So we moved here at the age of sixteen and I was under the care of Lewisham Hospital, where a lot of care was given and it has been well managed in that time, not only, um, in terms of when I get admitted, I get I get to get blood. I have gone through the system of blood exchange where I would go in every six to eight weeks. But right now, at the moment, is it it falls under the eight weeks threshold because it has been managed well in terms of the medication and also the checkups with the doctors. So, um, over time I have had a few exchanges. So it's just mainly means a certain percentage of my blood is taken out in a certain percentage of new fresh blood is put in to help reduce the sickle in the blood, and that has been quite helpful. And over time, this is just a weird curve ball was I was diagnosed with Hodgkin's lymphoma, went through the chemo and radiotherapy, and after finishing that I got diagnosed with um, vascular necrosis where I had a hip replacement at the age of I think I was thirty or twenty nine, one of the youngest to have a hip replacement at the time. But so far it has been treatment has been really amazing. And that's one of the reasons to be fair, have been involved in the research of sickle cell just to basically help the young ones, or help people with sickle cell with the understanding of the support out there and the sort of reach out is out there for them to get the support that I never had when I was younger, and to give that to the up and coming pediatric and adult care. In that instance. So yeah, so that's pretty much my own understand what my own experience of living with sickle cell and my journey around that. And I have been involved with Liverpool School of Tropical Medicine in terms of the research that they're doing to help support younger sickle cell and all around sickle cell patients, and, as we call it, sickle cell survivors moving forward in their own dealing and adapting with the condition and also living a better and a comfortable life around the condition as well.

I like the way the terminologies you use sickle cell survival. Sometimes we say sickle cell warriors because you're like constantly, um, you know, battling with this, um, with this, uh, disease. Yeah. And I will just, I just want to continue with you. Your. And when it comes not from your perspective with lived experience. How can lived experience of sickle cell disease shape what good care is? Know what good care really looks like and how can it influence research as well as health systems?

I think in terms of good care, what we'd have to think about is, first of all, the knowledge of it, because I think a lot of it growing up, I know we're at the point where there has been a lot of knowledge around that. There's been a lot of training. But from my experience, when you go into a hospital, you go into hospital with, um, through A&E. Most of the nurses do not understand what sickle cell is, so they will treat you like any other person. So you're in A&E for a good six to ten hours waiting. You're in pain, your joints are hurting, any parts of your body's hurting and no one seems to understand that, because I think one of the first things a lot of people think is you're in the hospital just for the medication. I do not ever would ever think that anyone would leave their house and think, you know what, I need to go to the hospital to get dihydrocodeine. I don't think anyone would want to do that. You want to sit in the hospital for a good ten hours waiting for that? But like I had mentioned, yes, it comes down to training. It comes down to raising awareness. And I feel like with regards to the research side of it, that is actually building knowledge, building the experience of people to understand what it is about and how best to treat them, and how also that influences people's lives. Because I think from my side the influence would be not just around, like growing up. I can't really play with other kids on the streets or do the normal things everyone else would do. And also, growing up, it's just in terms of employment side of things, you just get to choose what you can and cannot do. But so far, it is quite amazing how supportive employers are with it and how best they support in regards to that. But with the research side of things, it's just also raising that knowledge not only from the hospital side of things, but also on the employment side of things as well. And for you to live a fully and fulfilled life, you're well looked after in the hospital, and you're also well looked after outside to support your continuous improvement in all your lives. Right? Like you're feeling you're not losing any size of your life because of your condition or what you have.

It's really interesting how you you talk about raising awareness, knowledge and not just in hospitals, but as well as outside hospitals. You know, communities, schools and um, employment environment and how this is this shapes care. Uh, we'll come back with that. So I want to proceed to the next question, which is about person centered care. And as someone with lived experience, what does that actually mean to you in practice? And what can the health systems, the one you are in, which is basically the UK health system, um, learn from, um, one another from, you know, health systems from the global South to the global North, as well as health systems from the global North to the global South around person centered care for sickle cell disease.

I think in regards to that, just in terms of the person centred care, I'm under the royal in Liverpool at the moment and that's mostly around every single patient, every single warrior has a treatment plan. So when you go into the hospital you have that in hand so they know what it is they're treating for when you do get admitted. It is different for a lot of sickle patients because I think speaking to a lot of sickle patients, everyone has a different area of worry and treating everyone as one. We do have one illness, but it affects us differently. But it's also making sure that treatment is person specific rather than generalized, knowing what's best and what area to focus on. So for instance, like when I do go into hospital, it's either my. It would either be my sickle or it would either be my Hodgkin's lymphoma. They just need to sort of centre down to know what it is that they're treating for. But having that understanding, having that knowledge and training to do so, it's important not only for myself but also for the carer to understand that, because I remember when I do go into hospital with my mum, it would be a thing where she would have to tell them how to treat me because she has dealt with that for X amount of years of her being alive. But having that good person centred or person specific treatment helps individuals to feel valued, to feel understood, and also to feel well looked after in that instance.

I would call on you, Evelyn, just to bring other perspectives from researchers point of view, from a researcher who works with sickle cell disease communities in Zambia. What do you think? Lived experience of sickle cell? Or how do you think lived experience of sickle cell disease actually shape what good care is, and how does that influence research and health systems?

I think lived experiences help to define our research priorities. So the these individuals are our warriors that are living with sickle cell disease would highlight issues that we often overlook in traditional research, such as chronic pain, mental health issues, stigma, school disruption, transitioning from adolescence to adulthood, and also the caregiver burden that comes from taking care of our individuals, our warriors living with sickle cell disease. So the people with lived experiences or our warriors can advise on acceptable data collection methods. They can advise us on our visit schedules whenever we're doing research. The consent processes and also on are language that is just culturally appropriate as we are doing research, which in turn sort of leads to a higher participation and better retention as we are doing our research. Lived experiences also strengthen the mental health component and psychosocial research within sickle cell disease. I say so because adolescents and caregivers are often experienced anxiety. They could experience depression. They could experience a stigma. They could experience some burnout as a result of taking care of warriors with sickle cell disease. So their inputs. These lived experiences, they help US researchers to design interventions that could sort of integrate psychosocial support into a routine sickle cell care, rather than just treating it as an add on. But I think the lived experiences, it enhances just the translation of research into practice and how we can actually this into policies that could help us within our research and as we are taking care of our warriors.

That's really wonderful. Well said. It looks like you had something to to, to add to add to that.

Yeah. I think it's just like listening to Evelyn. It's just like she does touch on a few things, like in terms of the language use, because I know growing up it was a thing where if you have sickle cell, you're called a cycler. I read an article the other time where a person mentioned the cycler. I think it was mentioned in a good spot in my head and I thought, oh gosh, I haven't heard this word in so long. It's just that stigma that has actually pulled on you is just your mental health as well, because you're growing up and everyone knows you as a cycler. And as soon as they know, oh, you've got sickle cell, you're a cycler and that's it. And people look at you in a different way, and also the mental health effect that that has on yourself, not just only in school or in your public life or in work. It just adds a bit of toll onto yourself. Most of your trigger is usually stress, and when you're stressed about things like that, you're stressed about how people perceive you. You're stressed about what people call you. It adds an additional reason for you to fall into your crisis, and you're not understanding why it is. But you know, due to that stress, you are in pain for something that has an external factor to your life. So I think hearing that from Evelyn, in terms of how they take into account the lived experience of people who's lived with it to carry out the research is quite promising, and it's quite encouraging to see what it is that we're actually doing now for us.

Evelyn, I thought you had something to add.

Just from the experience that we've had working with caregivers in the participatory action cycles or the park groups that we have. So sometimes they they experience a lot of things, mental health issues. There's a lot of burnout and there's a lot of stress that is going on, anxiety about when their child is going to have the next crisis. There's just a lot of things going on. And one of the things that they said was, we just want you people to listen to us. Listen to how we feel. I know that when we come to the facility, we want you to sort of attend to our, our warriors, you know, as they as they, they are not feeling too well. So we just want you to attend to them. But there's a lot of things that is going on in our minds. We are stressed. There's a financial constraint that comes with, um, you know, caring for warriors and so on and so forth. So just that listening are ear from a mental health practitioners or healthcare workers at the facility. The caregivers are really excited about it. And it's sort of relieving inasmuch as it doesn't relieve everything that is going on. But at least the the burden is lessened because there's somebody that is listening to them. So this also it it sort of just translates into how we are going to conduct our future research, how we are going to do things better, um, in future by involving our caregivers and our warriors, uh, with these, uh, lived experiences of sickle cell disease.

That was really, uh, interesting, very interesting add on listening and listening to people with lived experience. They are going to shape care and they are going to actually make things easier in terms of care delivery and in terms of research. I just want to continue with you, Evelyn, around Person-centered sickle cell disease care. What does that really mean to you in practice, in terms of your work as a researcher and as a mental health practitioner?

So I think in real life or as I'm doing my work, it, it it really means about care that is tailored to an individual. You know, um, our warriors have got unique needs. So and, uh, when they come to the facility, we want to engage them in the care. We want to engage even the other family members in the care. So it basically talks about care that is centered around that individual or tailored to that individual that involves that individual, that warrior in planning. So it it it includes the the regular checkups for our warriors. It includes, uh, good pain management. What is good pain management. How do we work around this with our warriors and caregivers. It also includes the mental health support that our warriors and caregivers uniquely need, that social support that they need, and also helping family members understand the condition through continuous education and awareness. So I think it also works are best when care isn't just left to them, the researchers or the the the healthcare workers. We need teams. We need we need healthcare workers. We need social workers. We need mental health practitioners. We need the researchers. We need the community groups, all angles. We need the individuals to work together.

I want to proceed to our next point of discussion, which is around, um, how sickle cell affects people. So I'll come back to you. Um, sickle cell disease affects much more than physical health. So from your experience, um, we might have talked about this a little bit, but I want you to accentuate more what are the psychosocial or psychological and emotional impacts, and how can care become more holistic in response to this?

Now, in terms of the psychological side of it, I think it's just it comes down to the sense of acceptance, and it also comes down to the community as well, in terms of that knowledge being created, of the understanding of what it is in that instance. Because growing up, I think the psychological side of it is just not being able to share the you have got sickle cell because of the way the world might perceive you, because I think from my first employer, my first employer didn't know I had sickle cell, my university did not know I had sickle cell until I graduated. Even not to say I didn't have crisis when I was in school in uni, but it was just a thing of you took care of us as a normal absence from from school because it was something that just it is what it is. That's how we see it, because that's how you sort of perceive it. And that sort of affects you psychologically, because when you go into work, you can't do certain things or you have to be off certain days. But in most cases, we tend to push ourselves to go into work, even though you're not feeling one hundred percent, but it's just that understanding of whether or not your employer understands that. Or would you think, oh, if I can't go into work, I'll lose my job and that's it. But I'm quite lucky in terms of like, I was I was part of a group in a sickle cell group where we talk about all of this, and it's sort of like we have a psychologist in the team that just basically goes through what Warriors are they're going through to kind of discuss and come up with a better solution. I think that's one of the areas I found that you can sort of speak to your employee, your employee, if you let your employer know they would put certain things in place to support you. Now, when I got my current job, I explained that to my employer. I was like, you know what? Right from my interview, of course you could say this is it. And getting into the job. They have actually made accommodation to attend appointments. I am not missing appointments because my previous job I missed appointments, so many appointments that it got really bad. But the only time I can take time off is I would book it as a holiday if I'm in. If I've been admitted into the hospital for a week, that's a holiday for me. So my twenty or twenty two days holiday is just for admission days, and I have to stagger it in a way that I know it is needed. So those are the sort of like things I would have to do. But now it's just with regards to employer. Yes, they do make certain adjustments. They also give you time off work to attend your appointments. I do my exchanges. I see my doctors as normal. I get back to my job as normal. I've never actually taken a day off because those are the days I need off for. My appointments are taken as a day off for my appointments because I'm not calling in sick because I know I am well enough to go into work, so that that would be like the most affecting side of the psychological side of it. And then it comes down to the emotional side, the emotional impact of it, because you can't really date someone with their blood type as well. You have to be aware of the blood type of the other person in order to date, because you need to make sure your next generation doesn't have sickle cell, because from where I'm from, losing two, six, two sisters to sickle cell, I would not want to lose the child to sickle cell. So I have to make sure those are things that you would have to put in place to make sure whether or not you like this person or not, that your blood has to come into that conversation to say, okay, this is what you're looking for. And sometimes when you do tell someone that you've got sickle cell, it changes the relationship because you always feel like, oh, I don't know, I don't want that. But again, as much as you might think, I think a lot of people will think, oh yeah, that's fine, because at least I have mentioned it that early. It is not the same because you have just got a bit of a rejection in that instance because of what you have in your blood, and it's not your control. It's out of your control, but it is just one of the things you have to sort of deal with. But it is quite amazing that we have, like a psychologist who speaks to people about things like that, to kind of see how you were doing and how to tackle things like that as well. At the early stage of the relationship, to come into the hospital to do blood tests, to make sure things are fine, and if you do want to move forward, you get the talk to you about the possibilities of what might happen in the future, as long as you're willing and able to face that. I think that's where it comes in, and that's where it comes into play. In terms of looking at the holistic to make him more holistic in terms of the medical side of things. It's just having those systems in place, not only the nurses and doctors, but also different professionals as well. In terms of the psychologists, in terms of the mental health nurse, to sort of help out in those areas of where you need it, and also having those facilities in terms of if you're looking for like in terms of employment, there is someone to talk to you about what your rights are in employment side of things, and also who to speak to, who To guide you through those areas, because there are different aspects to all of us. And I think I have grown up into the sense of not needing those things, but understanding what I have missed out, not needing, not having those things growing up, but now having those things now. I am fully able to use those as part of my healthcare to make sure not only am I okay physically, I am also okay mentally and emotionally as well. And that's the most important part of all of it.

What a way to express how important holistic care is for sickle cell disease. You know, the consideration of both clinical and non-clinical care, whether hospital based or non-hospital based, considering every aspect of the person's life from school, work, mental health, and even social and community life. Thank you very much for sharing that with us. So could you share how your participatory approach is to research or bring patients, communities and clinicians together to create real change? And what cross partnership collaborations have taught you so far?

It was really nice listening to how you just explained the holistic approach to sickle cell disease here. I remember when we were having and it talks about relationships and all that. So I remember when we were having a training with adolescents and adolescents just simply said, you know what? I'm not going to marry because I don't want my my child to be a burden. I feel like I'm a burden to my parents. I don't want my child to to be, to feel the same way I'm feeling. But as you begin to just cancel them, talk to them that it's not. It's not a death sentence. You can live your full, meaningful lives. You can do. You can become productive humans. It sort of changes this. The the whole narrative that they don't want to marry, they don't want to be a burden to people. They don't want their children to be burdens to them. So that just reminded me of the conversation I've been having with adolescents. So when it comes to the participatory action cycles or the park groups, I've really learnt a lot from the park members. Uh, so the park members consist of different stakeholders. We have the warriors themselves in the groups. We have caregivers, we have pastors, we have teachers, we have healthcare workers, and so on and so forth. So getting ideas from all these different people, different, um, uh, individuals getting their perspective, getting ideas, learning from them has really helped us to offer better care to our warriors as they come to, as we are taking care of them when they come to the facility or in the communities, and so on. So the caregivers really bringing the lived experiences, the warriors also bringing the lived experiences. We have the teachers that may not have information on sickle cell disease. We have some healthcare workers also that do not have certain information on sickle cell disease. So as we come together and share these ideas, plan on how to take care of individuals with our warriors. It's, uh, it brings in a new perspective. It's this new knowledge we are learning as we are doing the work, as we face the challenges, as we identify some of the root causes of the problems that our warriors and our caregivers are facing with regard sickle cell disease. So as we begin to dig into these root causes, we are planning together to identify some workable solutions that have helped us to come up with, um, to sort of navigate the challenges that we are facing with regards to sickle cell disease. So it's a work in progress. It's implementation science. We are learning new things. We are uncovering, um, certain things that have worked and other things that haven't worked. And we're trying to sort of find new ways of how to navigate certain issues that our, our warriors and our caregivers are facing with regards sickle cell disease. Um, and I think from a mental health, ah, perspective, I think we've talked about this and I also alluded to this. Sickle cell. People living with sickle cell disease often experience chronic stress due to the recurrent pain crises that they have, the frequent hospitalizations and so on and so forth. So when we share this, we get opinions from them, the caregivers. We get opinions from the the healthcare workers. And we also get some perspective of the warriors themselves. It's it it helps us to sort of offer that holistic care and support to our, our warriors living with sickle cell disease. So it's a lot of learning. It's a lot of new things that are coming on board. It's a lot of advocacy from the, the, the patient groups. It's a lot of sensitizations in the community. And we still have a lot of work to do because out there they are still myths, you know, especially here in Africa. In Zambia we have a lot of myths like sickle cell disease. You you have sickle cell disease because you've been bewitched. You were bewitched by your grandparents, you will be wished by so on and so forth. So when we bring these groups together and we share information, they in turn also go out there and just share this information to, uh, the community at large so we can just disperse. Some of these are myths that are actually worrisome in our communities. Yeah. So I think, um, the park groups have really, um, you know, done a lot of work. Uh, the healthcare workers are working, on the other hand, and the the patient groups as well are working on the other hand, there are support groups for our warriors that are living with ah, ah, sickle cell disease where they just share, uh, the, the, the, these lived experiences with sickle cell disease, some of the challenges that they are facing, as well as some of the successes that, um, you know, have sort of, um, helped them navigate, um, the journey so far. Yeah. So it's it's a lot of work.

Thank you very much. Evelyn. I just want to, uh, call on our listeners. You know, Evelyn did mention pack groups and a health worker groups in the project, patient centered sickle cell disease management in sub-Saharan Africa. Packs. There are different groups of um there are different types of interventions taking place. One is the community intervention and the other is the um health facility interventions. And the community interventions, which is led by Evelyn. Um is made up of groups of participatory action cycle members, which is what um, Evelyn mentioned as pack groups. While the um health facility based interventions, um, is made of groups of standards based audits, um members, which is, uh, what um, Evelyn did mentioned as health worker groups. Um, thank you also, Evelyn, for pointing out strongly on how cross-disciplinary approach has or helps understand sickle cell challenges from different perspectives, which is actually used to shape the care that is provided for sickle cell disease. Aim warriors that would include things like addressing stigma, myths and misinformation in the community, especially when it comes with interventions using community groups. I'll come back to you with your lived experience. So what changes do you think are most urgently needed to improve the lives of people with sickle cell disease at the moment, and what actually gives you hope for the future?

I think there is a lot of work being done with the system at the moment, especially with, um, the Liverpool School of Tropical Medicine that has been looking through what they're doing currently in terms of the research they're taking part in. I am quite pleased with the work that's been put into sickle cell research currently, and it just fills me with pride in the amount of work that goes into that. And in terms of the plans for the future, I think we're going through the we're going to the right direction in terms of ensuring, um, what's it called in terms of ensuring that we have got, um, treatment plans in place? We have got the right people. We've got the right people in the right departments, such as like the psychologists and nutritionists and all other factors like counsellors, just making sure things are working the way they should be. I can't really bring out something at the head tip of my tongue and just say, I think this is what we could do better, because I think we are doing those things that we are, including those things in our research, is to make sure those things are brought to light and ensuring people are well trained, understanding what it is. Not only like Evelyn mentioned, it's not a it's not a death sentence. It can be treated. There are treatment plans in place as long as you look after it. Well, you look after yourself. One of the care of sickle cell is oneself. You have to look after yourself and also let the doctors look after you in order to be able to manage your condition better. I think that's where we are moving forward with in terms of the research around that and also the support around that, and also just letting creating awareness in terms of where to find those information and where to find those support, and also to support the researchers behind that to make sure we're providing the right information we're supporting in any way we can and taking part in any research is available and any support materials that we can provide to them. Understanding where we're coming from and in terms of it's not we're not asking for, We're not asking to change the world in a day. We're just asking for people to listen and also to look after us the way we should be looked after and understand that we do have that health requirement.

Thank you very much. Ayo thank you. And that really sounds positive. And I just want to add to your point, because I know you are involved in this research at the Liverpool School of Tropical Medicine, which is called the Score project, which is actually a sickle cell outreach resource and engagement study that is exploring the design of sickle cell resource centres or hubs in the Liverpool area. And the fact that you are calling on support, uh, behind the research for services that will potentially improve, uh, sickle cell disease care, um, in the communities as well. So yes, that is, uh, really amazing. And I'll come back to you, um, Evelyn, around the same question.

I loved, um, everything that you just mentioned. And, um, there's hope. There's hope, actually. Yeah. And he's actually said a lot of things that I was going to to say. But just to add on, I think, uh, with the African settings, it's a bit different. We are really trying our best to offer, um, you know, the best care for our warriors. We are really trying the best with ongoing research. The the park groups, participatory action cycles and, uh, the healthcare worker groups, the standard based audit. So we are really trying as much as possible to offer that support to our warriors. And, uh, that just gives me, um, a lot of hope that we can do it. Yeah. I think, um, like I mentioned and like I also just alluded to, we are trying our best to, to change things or better things for our warriors. But we need we really need the better access to quality care for our warriors. You know, there's still little information about sickle cell disease in the communities. When we conduct some sensitizations in schools, when we conduct sensitizations in the market places, in churches, there are actually a few people that know about sickle cell disease, how it comes about how we can, you know, how they can access care for sickle cell disease and so on and so forth. So we we really need to go out there and provide this information through different platforms like we are doing right now, through the radio stations, through, uh, community Sensitizations in the markets, in the churches and so on and so forth. In every gathering that we we can manage to spread the word about sickle cell disease. I think we need to. We need to do that. And what gives me hope is, um, just seeing more warriors, more caregivers coming to the facility, accessing some mental healthcare, accessing support, different forms of of support through the different programs and interventions that we are doing. It really gives me a lot of hope that our warriors are actually receiving, um, some form of care. They're receiving some form of emotional support from the facility, from the healthcare workers, from the families and so on. So I think also just the fact that the community, the advocacy groups, the the patient, uh, the patient groups, the caregiver groups are coming together to sort of advocate on, uh, sickle cell disease. That really gives me a lot of hope because ultimately, their voice really matters, and we need to listen to what they need. So and these are conversations are actually growing and we are seeing real improvement. And um, I think this really, uh, is going to shape, um, how we provide better care for our warriors and caregivers.

Thank you very much for that wonderful insight, especially on accentuating, on, uh, sensitization and being able to use every possible platform that is within the communities. So, um, I think we have come to the end of this session. Thank you very much, and, Evelyn, for your time and for sharing your insights based on your lived experiences and your work experiences, and for expressing hope for the future of management of sickle cell disease, both at health facility and, uh, outside health facility. Thank you very much.

Thank you very much.

Thank you so much.