Sickle Cell Patient Turned Patient Navigator Shares Perspective
In this program:
How has a sickle cell patient’s experience impacted his work as a patient navigator? Sickle cell advocate John Masembe shares how his patient experience has helped guide him in his efforts to help other sickle cell warriors.
Transcript
Interviewer:
So how has your experience as a prior sickle cell patient shaped your work as a patient navigator?
John Masembe:
Oh, this is a very tough question, because I think a lot has changed ever since. I'm much more aware, my job as a navigator is to help patients through any complexity, navigate through the healthcare system. As a navigator, I try to let my patients know, "Hey, these are your expectations as a patient." But first I...I'm much more aware to what their barriers are, it could be community resources, it could be health literacy, it could be...because not everybody knows how to interact with doctors, not everyone knows how we...it could be nerve wracking to open up with your doctors sometimes. And the terminology sometimes that's always used, that's another part too that could be hard, but then I'm much more, I pay a lot more attention to race, I pay attention to education, health literacy, to assess my patients for them to know, "Hey, when a doctor says this is an X, sometimes it's what this means, now I'm not changing the doctor's words to try and interpret in my own way, no, but like, I help them...
I help my patients understand, this is the...perhaps, maybe this is what they're saying. Culture sensitivity is really, really important to me. Because there's a lot of authoritative, when you're in your doctor's room, that's your doctor, he's your social care, but patients do not know that they have rights, you know what I mean? So sometimes a doctor could say something out of pocket in my culture when you...when you're speaking to somebody and you say something that, how should I rephrase this? As a Black patient there are some things that we do, there are some cultures...I don't know, even the body language speaks. When a doctor comes in like this, it's already like you, they're already looking down on you. When talking about things about pain, you already go through, "Oh my God, the stigma," you know what I mean? Pain medication, all those things. So I tell patients that, "Hey, you have rights as a patient, your doctor is your friend, they're there to help you, they're there to help you through treatment, otherwise they would not have gotten in healthcare in the first place.
Helping my patients know that these, if I know what their barriers are, it could be mental health, it could be transportation, it could be housing, because all those things matter when you come, you have all those things outside before you come to the hospital. So I talk to them about personal things that are going on so, and much more that way I can help them take away some of that stress, that way they can focus on their care too. I also educate doctors, was like, "Hey, patients, how you interact with Black patients is different than how you interact with your white patients."
Interviewer:
Yeah.
John Masembe:
That's really important. I don't know how we sit down and have these conversations in our community groups. In those community engagements that we have on the side, that is how we bridge those communication gaps. And I think one other thing I do tell patients, "If you ever feel you don't have a say, know where your support system is, talk to your social worker, if you feel like the sickle cell is overwhelming. And sometimes you may not have somebody to talk to about your things that are going on here. Also stress manifests physically, so sometimes crises are the result of our stress. You have a sickle cell crisis in your chest, but it's because of the stresses that you have going on outside of that. So that's another thing, and then in the hospital setting, if you ever feel discriminated against or you feel like the quality of care you're getting or maybe your doctor is not hearing you in some spaces, go to patient relations, patient relations is a department that helps resolve any communication or patient experiences that you might have had. So don't feel you have to bottle in all your issues, just because your doctor said so. I'm not so sure if patients, not everybody, every hospital has a patient relations department and their job is to make sure you get quality and equitable care. So that is how I help patients through treatment, yeah.
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