How Can the Shortage of Hematologists for Sickle Cell Care Be Addressed?
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In this program:
Sickle cell care can be improved by addressing the shortage of providers. Sickle cell disease patient advocate and care partner Carla Lewis and hematology nurse practitioner Maya Bloomberg explain improvements in process for sickle cell care and how patients and care providers can advocate for their best care.
Transcript
Ariqa Everett:
So what do we do about the shortage of hematologists for service expectations?
Maya Bloomberg, APRN:
I think we're working on it because we have medical students and residents and fellows who round, I love when they round in our clinic, because when we see patients in the hospital, you're seeing somebody at their worst. So I definitely do not think it's great to judge somebody during a hospitalization for an acute crisis, so I think early exposure for the medical students to hematology. A lot of times people don't have their minds made up on what specialty that they want, so being able to expose them early, you could potentially ignite an interest. Part of ASH research that they were doing and they had a survey just showing what the impact was on all of these different skills, and I thought it was interesting that one of the data points that they pointed it was only 20 percent of primary care providers felt comfortable taking care of a sickle cell patient. So we're focusing on sickle cell specialist hematologists, but we also need to focus on primary care, because a good primary care provider can do amazing things and just a regular ear infection to then trigger a sickle cell crisis, so having a primary care that you have good rapport with and you can talk about and just make sure you're staying on top of your primary health type of issues is ultimately going to translate to better sickle cell management as well.
So I think we definitely need to just trigger that interest in patient providers early on, and there are different blueprints and different education series and fellowship programs that are helping expose. But I think we need to kind of do it earlier than later when patients...providers, excuse me, they already have their minds made for what specialty they might want to be in.
Carla Lewis:
I'll just add to that, just as a caregiver and also patients that I've advocated with, we have to understand that we're a partner in care. One of the things that made me actually feel good was my son was hospitalized at one experience, and I had to go pick up the patient badge because once you have long stays, they would give parents a badge. And my badge said, “partner in care,” and, I was so proud to wear it, because I felt like it just meant a whole new meaning to...I'm the mom, I'm the caregiver, but I really felt that as the team walked in and greeted me, I was that partner, they asked me questions, they asked him questions. I know that will change a little when he's transitioned on to adult care that we're preparing for that but just for parents and patients to understand they are a partner in care. One of the things that was also mentioned here was advocating for yourself, understanding and knowing the resources that are out there, so those resources of knowing your disease, knowing where the pharmacy that you...
Potentially get your medication from, if that changes, having the conversation even with your pharmacist, if you know the dose is down...or you didn't get your medicine on time. Whatever it is, maybe just making sure that communication is also open. One of the things that was also mentioned was having a primary care doctor, so a lot of times from pediatric care, especially myself, I focus so much on our hematologist, but I also have a good relationship with the primary care doctor that I've had. And the primary care doctor that I've had also had noticed some symptoms with my son that he passed on communication with the hematologist, which they were able to do more screening on...that is so important. And a lot of times when...because we spoke about the lack of having hematologists specialized, but if you have a good relationship with your primary care doctor and you can actually have them refer you to different specialists also, and that has been basically important. I would definitely say that a lot of patients may...adult patients that are not seeing a hematologist, I always recommend find a great primary care doctor because I had to do that, we were referring one of my friends to a primary care doctor. And it was actually the one that I was seeing that helped pretty much give her to Shamar.
And she wanted to actually go into that primary care doctor would not see a hematologist at all until that primary care doctor visit or in the hospital, he had some conversations where I said, “Hey, I'm referring you to this great hematologist. Now you have to try, you have to give it a try.” And that kind of helped him from to this adult patient in order to definitely seek that hematologist. She came back to me, she said, “Guess what? That doctor was great.” I wasn't thinking I changed it. I heard she was in that transition, so she was just her first..because she had a great hematologist as a child, but because of adulthood, she was pretty much hesitant to that, but having that permanent for a while and understanding that they did have some information about sickle cell, but they were educated all that. So that for us, we have to be able to build that trust by being open to have communication and then building our relationship with the doctor, so even though we may not have so much specialists, definitely in hematology, but definitely we have skilled doctors that can do some definite intervention and treatment in order to better manage sickle cell.
Maya Bloomberg, APRN:
And just to bounce off of that, I know so many sickle cell patients have negative experiences from previous providers, but you should go in open-minded to every doctor's appointment and not necessarily clump all providers in that same category of providers who don't listen to you or don't believe you, etcetera, because you're just delaying yourself from getting good treatment. So you might end up having another terrible appointment with another doctor, but I would at least recommend going in open-minded to those appointments and create your judgements and what your experience was after the appointment than going in, trying to protect yourself with a negative expectation, because it's just going to delay the type of care that you need.
Carla Lewis:
And I'll also add to that, that also means going to the ER with that open mind also, because sometimes cause we have patients that are not seeking hematologists or not seeking out having a primary care doctor because of lack of insurance, they may be dependent on that ER care. And we know that that experience is totally different, and definitely some biases do exist. But we have great doctors that may be also there that are also there, so we have to just also as a caregiver I had to experience something different as my child got older. So having that open mind to know that general care is definitely there, but there are skilled workers that will listen and just knowing how to advocate for yourself, but they definitely help you get a better experience and help with your managing the disease better also.
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