Young Adult Black Sickle Cell Patient Transitions to Adult Care
In this program:
Transitioning in sickle cell disease from pediatrics to adult care can be a very huge disruption in a lot of sickle cell warriors’ lives. Discover tips from sickle cell warriors John Masembe and Jemela Williams.
Transcript
Interviewer:
What is your experience as a Black patient, how would you define it at an early age versus adult care? Because we know transitioning in sickle cell disease from pediatrics to adult care can be a very huge disruption in a lot of sickle cell warriors’ lives. So how would you define your experience?
John Masembe:
My experience was, honestly, I was kind of like thrown into the swimming pool and expected to...thrown in the water and expected to swim with no swimming lessons or anything like that. Maybe they might have back in the day, but I know once, it's very hard when you're pediatric, you have a whole lot of support system. Our support system around you, your appointments are scheduled for you, doctors follow up with you much more closely because you're a kid. But when you're transitioning to adulthood, a lot of, what was the biggest challenge for me is learning the healthcare system and who to talk to, who are my contacts? Where are my resources? Who is my support system and who I have to talk to? And also, so one of the biggest challenges for me is like, I was not prepared. When I was a kid I did not know, but the older that I got and I think about it, I know race definitely played a role in the quality of care that I was receiving, that was one thing. So preparing young kids to know early on, "Hey, yes, right now you're good because you're young, however, your race is going to play a role in how you interact with the doctors, how your pain might be experienced, even also...that's one thing.
And another part of that too is educating transitioning from pediatric to adult care. We have this program in Seattle, I really wish that we started early on, but talking to kids at their early age that, "Hey, you going to adult care, you're going to have to be your own independent person and your own self-advocate. So I really wish that what we do is we teach kids to engage with, at Fred Hutch...sorry, I'm bumbling on the question now, but at Fred Hutch, we do have primary oncologists that meet with the pediatric doctors at Seattle Children's. And those children at around the age of 16, they talk to them about, "Hey, when you transition to adult care, this is going to be your primary oncologist, this is going to be your nurse coordinator, this is going to be your insurance person, this is going to be your social worker. So we even give them tours to go see the hospital where they will be going for adult care, so that really helps. But the other piece of that too, and I'm probably going to stop here in a second, I'm sorry, is understanding there's life outside of sickle cell disease.
Interviewer:
Yes.
John Masembe:
My whole life was just sickle cell disease, I had no college ambitions, I had no idea that I could work any other jobs or anything like that. But not until my transplant is when I realized, “Oh, my God, I could live, I could do other things.” So I don't know what it's like in your area, how do kids transition. But talking to them early on that, "Hey, you could still go to college, you could still have some dreams and manage your care at the same time. Is it similar for you? What's the experience like?
Interviewer:
Well, my experience they always say this about, I went to Children's Mercy Hospital here, and we stayed...Dr. Gerald Woods was our doctor, and we stayed until we were 21 years of age. So they always say that Dr. Woods coddled his patients for far too long. But when I left, they talked to me a little bit, but we didn't have a transition program back then at all, we had nothing. They always said that they were starting it, but it was going to start a year after I left. And the sad thing is they still don't really have a full transition program. But my doctor, who is now my current doctor, I just started seeing her, but she is the sickle cell nurse practitioner. And she does talk to the kids at Children's Mercy, the teens, and let them know this is an option, you can come to this hospital, she does a tour and everything or a sickle cell board has a really close connection with Children's Mercy Hospital and the adult clinic. So we try to help patients as much as possible, but we are still in talks about how can we make transition better? How can we not let patients fall through the cracks? Because they told me some things, but I had no idea about how to make appointments, that I had to call this doctor, call this doctor, just like you said, everything was all in one place and it was just, like a shock once it wasn't.
So I had to get through that. Luckily, I had a lot of help from my mom, but I feel I could have easily fallen through the cracks if I didn't have her help, because I didn't know what to expect.
John Masembe:
That's a strong point, one thing I, something just came to my mind as we speak right now is when you want to change any healthcare system, and whether it's your doctor or anything like that you, most of the doctors are health directors. So they have the power to connect to someone, either at director or executive level. At those levels that is where, those are the people that have the power to structure system changes. They could say, oh, if they bring something like that to their attention, I don't know who the Mercy executive director is, or, that they could talk to the doctor, or they're like, "Hey, who do I talk to about the experience about developing a transition care program for sickle cell kids?" They'll connect you to either a director or a VP. Those hospital VPs and directors, they have the power to change systems. Even if you just bring something to their attention like that, they're easy, they like to talk about it, but also know who the leaders are in those hospitals. Even if you don't know, ask your doctor, they're obligated to connect you to those people because they have the power to improve, structure development, to improve funding for some of those programs.
If you show there's a need, they'll be like, "Oh, okay, let's try to capture these patients that are falling through the cracks to make sure that they're able to go through efficiently. That's what we did here at Seattle Children's. We had to sit down, the Seattle Sickle Cell Community sits down with Seattle Children's executives and we were like, "Hey, patients are saying, pain is not being managed, and they don't know who to talk to." The doctors, the nurses, they have influence, but it's not as much as the directors and the executives. But if you tell them you're interested in talking to them, they're obligated to get back to you, that's for sure. So I would encourage some of your patients to do that if possible.
Interviewer:
Okay. Great, thank you. That's really great advice. Thank you, John.
John Masembe:
No problem.
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