Why You Need a Patient Advocate: Lisa Berry Blackstock on Taking Control of Your Care

In this episode of Beyond My Diagnosis, I talk with Lisa Berry Blackstock, Independent Patient Advocate, educator, and founder of Soul Sherpa Healthcare Advocacy Services. Lisa has dedicated her career to helping patients and families make sense of complicated medical systems while maintaining compassion, dignity, and choice.

We talk about why patient advocacy is vital in today’s healthcare landscape, how trust and communication can transform outcomes, and what it really means to put patients first. Lisa shares her insights from decades of navigating hospitals, insurance systems, and end-of-life care while teaching others how to speak up and stay informed.

You will learn how to:
 • Recognize when and how to bring a patient advocate into your healthcare journey
 • Ask the right questions to build confidence with your care team
 • Navigate the healthcare system with clarity and compassion
 • Understand end-of-life options and palliative care from a patient-first perspective
 • Access trusted tools like Lisa’s educational program Patients First

Lisa Berry Blackstock is an Independent Patient Advocate, author, and educator with more than three decades of experience guiding individuals and families through complex healthcare systems. She is the founder and owner of Soul Sherpa Healthcare Advocacy Services, established in 2008, which has grown into an international practice known for its compassion, integrity, and results-driven guidance.

Lisa is a certified hospice and palliative care counselor and an author featured in The Caregivers Advocate, Volume 2. She also created Patients First: Navigating Healthcare in America, an online educational program designed to help patients, caregivers, and advocates gain confidence and control in medical environments.

Through her company, Soul Sherpa, Lisa provides clarity and comfort to those navigating serious illness, end-of-life care, or medical uncertainty. Her mission is to empower people to be informed, proactive, and supported at every stage of their healthcare journey.

🌐 soulsherpasolutions.com
🌐 soulsherpa.com
🔗 LinkedIn: Lisa Berry Blackstock
🎓 Patients First Program

Transcript

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(Music) Hello, this is Michelle Weston. Welcome to Beyond My Diagnosis, a podcast to help people with chronic conditions. Not just people with chronic conditions, but their caregivers and friends and family. So we've done a lot of shows. I've done a lot of shows, but I always say we, because I always have a guest. And I've invited back one of my favorite people, Lisa Berry-Blackstock. Lisa is in the field of patient advocacy. But I wanted her to come back and talk to us about, again, why she got into patient advocacy and what she's doing in the field of patient advocacy, because it's a very, very open field. And we need lots of advocates for lots of different reasons for patients and caregivers. And most of us come to this because we're either in the field of healthcare or something occurs to us or to someone we love. So with that said, Lisa, how would you say you fell into the world of patient advocacy? The short version is because I had a hole in my head.(Laugh) Well, that's a simple, simple version. Right, and the long version is that after many misdiagnoses and continuing to suffer from electric shocks on one side of my face, I was finally diagnosed correctly and found out that I had a rare nerve disorder that emanated in my brain stem. And I needed major brain surgery, which involved a craniotomy to correct that nerve disorder where an artery was compressing the left side of my fifth cranial nerve, my trigeminal nerve, which feeds into the face. So I was diagnosed at UCLA School of Dentistry in January of 2008 with a condition called trigeminal neuralgia, which is also known as the suicide disease. Wow. It is so horrifically painful, and oftentimes people are misdiagnosed, which causes them to reach such a point of despair that they literally don't know that they have any other option. Wow. I fortunately was not driven that far, but I was told that there was nothing wrong with me after I had five unnecessary root canals, and that I needed to go talk to someone about this pain I was experiencing because the five root canals should have taken care of it. Yeah, you should go see a shrink lady because you're a lady, and you must be crazy. So it's not my fault, so maybe you should talk to someone. Yeah. Well, thankfully, I ignored that advice, and I went to a teaching and research hospital in Los Angeles where I was properly diagnosed within the first 10 minutes of my visit. Wow. But that's also because you persevered, and you are a person who knows deep in your gut that sometimes the answer that you're given is not the correct answer. It's just not, and you're not crazy, but OK, let's try this. Let's try this, like five root canals. And here you are, Stanford-educated, smart, smart lady, and don't tell me that I'm crazy. Why don't you listen to me, which is why we have advocates? Because sometimes you need someone to help you as the patient advocate for yourself. Well, I only wish that I had an advocate when I was going through this horror in 2006 and 2007 because I literally just fumbled my way through, and thankfully, being able to secure an accurate diagnosis and treatment. But it was extremely difficult. The pain caused me to become clinically depressed, which is something that a feeling I never ever could have fully appreciated until I received that diagnosis. The level of exhaustion was the most significant symptom that I had, and I've always been pretty energetic and active. And not to be able to get out of bed was absolutely terrifying. And I did not know what it was because I didn't have any experience with clinical depression and thought that depression just meant that you felt sad. But because of my own experience, and I do have a lot of clients that come to me now who, for whatever reason, experience true clinical depression and or chronic pain. And when you can relate to that personally and really know how that feels instead of just reading about what it's like in a textbook, it makes a huge difference, in my opinion, as far as how much you can help that person. Yeah, I mean, how do you explain to somebody, you know, when given a chronic diagnosis, especially one, you know, I have one that there's no cause and no cure yet. So don't think that with my family history of depression, I didn't want to just climb under the covers and just stay there. But there's also the part of me, fortunately, that was ready to fight. But it took a long time, you know, and depression is something that you need to manage and you need to learn how to live with. And also, as you said, sometimes you just can't get out of bed. You just feel so yucky or so sad or so in so much pain that you don't know what to do with yourself. It's like, I can't do what I want to do, especially if you were an active person. And I'm sure that coming upon you was even more of a, you know, what is this? Well, it was terrifying because, you know, to go from being a high altitude hiker, which my husband and I are, to not being able to get out of bed, absolutely terrified me because I didn't know what was wrong with me between the exhaustion combined with the electric shocks on the left side of my face. Unbelievable. It was absolutely horrific. I was only 46 when this started and literally it happened overnight. I went from having zero symptoms to feeling an electric shock in my face without any warning, you know, once every few minutes. Wow. Wow. And that you were even able to tolerate it is a testament to, you know, your tenacity and your ability to persevere to find out what was going on. And as you said, you know, wouldn't it be nice in 2006 and 2007 if you had known about a patient advocate? And I had to learn about patient advocates because you and I became ones for ourselves first. We had to learn how to speak up and to ask questions and to not just accept what is just said to you, but to really keep asking, how do I handle this? What do I do? How can I, how can I make this better? How, what will make this worse? And that's not always in everybody's wheelhouse, right? I mean, it's just not. Absolutely. I mean, I think, I don't think it really had to do with intelligence for me. It was the mere hard wiring to survive that pushed me forward. And I didn't have the luxury of exercising any intelligence when I was going through suffering without a proper diagnosis and treatment. It was literally survival. And I think that it was that basic for me. But, you know, Michelle, we both know there are cases of people who truly are hypochondriacs. There are people who have somatosized pain, which is very real. Their body truly does hurt and cause them pain because at least in part, there are some unresolved psychological issues. Oh, sure. But I, so not wanting to, you know, to shortchange the medical community for being aware of those things. But I think what what I learned is it's so incredibly important that every human being before you become a patient, that you understand yourself. And by understanding yourself, you know, qualities and traits that are not so positive, we all have them. It's so important going into health care. And even if you are working with an advocate, your advocate can only be as good for you as you are being honest with them. And I encourage people to never stop self exploration and self understanding to to really make sure that if they are experienced, experiencing true physical pain that that they know I knew in my head when I was told by two doctors, we can find nothing wrong with you. You need to go talk to someone. I just knew as depressed as I was and in as much pain as I was. I just knew it wasn't true because I just knew that being shocked electrically in a very specific place, which is not anything that I had ever experienced in my life. I just knew it wasn't true about myself. And that's why I had no trouble continuing my search for care. And one thing that I learned that all advocates know now is that physicians who are associated with teaching and research hospitals in the country in general are much better qualified and have many more resources at their disposal to help someone with a complex condition. Agreed. And it's just a basic fact and it doesn't mean that a physician who doesn't practice at a teaching and research hospital is not a good physician. It simply means they haven't had the number of patients pass through their doors. They don't have the kind of support staff and they may or may not be certified in their specialty. Teaching and research hospitals as you know require that, but there are a lot of community hospitals where I first began my search in Thousand Oaks, California, just over the Los Angeles County line into Ventura County. That's not where I started my search because I didn't understand the difference between community hospitals and teaching and research hospitals. And if you don't come from that, I'm fortunate because I'm a doctor's daughter. So knock on wood, I know a little bit more, but you have to keep asking questions. And that's why living in New York is great because we have a lot of teaching hospitals and that you ended up in Los Angeles at a teaching hospital makes perfect sense. Because the amount of research that's being done through that hospital is tantamount to being able to open doors to find out why and how and because and what the cure is and what we can do for so many illnesses. You know, it's just if you if you don't have people asking questions all the time, I wonder, you know, even even as simple as P.T., I'm working with a physical therapist who's doing research at with grants over at Hunter College. And he has taught me with his students with my drop foot. My gate is so much better as they do their research. I benefit from them seeking better ways to help people struggling with droplet with fatigue, with neurological fatigue. How do you how do you do that? How do you how do I explain to people? How do you explain to anyone? I need to lay down because I need to reboot and it's 20 minutes and sometimes it's longer. And if you look fine, it's also even harder. You know, and here you're having that pain in your face. Can people see it? Do they know that you're experiencing it? Right. Well, no one could see, you know, from the outside because this was a complete internal process. And the only thing that was going on was, I mean, I could not sleep well, so I was becoming more and more exhausted. I was losing more and more weight because every time I moved my mouth or my face on the left side in any way, it caused electric shocks. You know, if nerve pain, anyone who's experienced nerve pain knows that it is unlike any other pain that the body can experience. And medications that are typically used for pain such as opioids have absolutely no effect on nerve pain. No, absolutely. I mean, you know, people can say that if they are using them that way in my, you know, knowledge, sometimes it's just a band-aid. And I don't want a band-aid. I want the ability to explore ways to stop that or minimize that. And that's what's important, you know. So learning what, you know, what an advocate did, you sort of did it trial and error in your own way. How did you stumble upon the world of patient advocacy? Well, it was prior to launching my practice in January of 2008, I had another business in Los Angeles, which was a thriving state administration business. It was going very well. And I didn't have any reason before I started experiencing electric shocks in my face that there would be any reason to change careers. But it was after I went through misdiagnosis being denied by my PPO insurer to cover my out-of-network neurosurgeon, because there were no in-network neurosurgeons at that time with my insurer in Southern California who were experienced in the specific type of craniotomy that I needed. I was not going to stay in network just for the sake of having an in-network surgeon and let someone without experience with the procedure that I needed literally drill a hole in my head and work his or her hands down to my brain stem to separate an artery off of my trigeminal nerve. It wasn't happening, but I did appeal that denial and I did win. And my neurosurgeon asked me if I would be willing to help any of his other patients with insurance denials because none of them in his practice had ever been approved for his services as an out-of-network health care provider. Wow. It was after going through excruciating pain that completely took away my quality of life, which went from a 9.9 to a 0.0, combined with the fact that I had to cough up five figures to pay for my neurosurgeon, which I had to withdraw from my retirement account because I didn't have that kind of money sitting around. Between the physical and emotional anguish and the financial sting, those combined were enough to make me say, and this is long before the Affordable Care Act was passed in 2010, that I didn't know that this work was called patient advocacy at the time. But I did let people know and my neurosurgeon let his patients, who told their friends and families and doctors, and that's how my business launched. I'm never thinking that I would find a larger community, that there would be an Affordable Care Act, and that millions of people would find themselves in a position where not only could they get the necessary health care that was required, but that they would be able to afford it. Yeah. That's even bigger, right? Yeah. I mean, I have to say that I would say three quarters of my practice now is remote work, where I don't ever meet my clients in person. Isn't that crazy? I have medical billing negotiations for them. I appeal denials for medically necessary treatment, and I help them select and understand their insurance policies, and also help them with their advanced health care plan. Which is really important, you know? Extremely important. People don't understand the health care proxies and health care planning. This is a big deal. Having long-term care, if you have a chronic condition, is something you really have to look at. You know? I mean, it's not, "Oh, I don't have to worry about that. It's not a gone with the wind moment of I'll think about it tomorrow." No, you have to think about it today. Well, you know, and that's especially true because while most people, I mean, I don't know about your practice, but in my practice, most people assume that my clients are all seniors on Medicare. And the reality is about three quarters of them are under 65. There you go. And that is becoming more and more common, which runs against the grain. I mean, there are still seniors who happen to be on Medicare who need help. But the percentage of young people who are, and middle-aged people who are encountering problems, you know, from getting an appointment to having a doctor listen to them, to getting a plan of care that is going to be covered by insurance, and having that plan run smoothly without any interruptions, that is a very difficult thing for a person to secure in the health care environment today. Very, very much. And it gets harder, unfortunately. And doctors have less time. So it's sort of a, you know... Right. And that is why... Damned if you do and damned if you don't, right? That is all because of the political and business underpinnings of health care that very few people understand. Because if it weren't for the health care model who are a group of people funded very, very well by the American Hospital Association and the private insurance companies in this country, the pharmaceutical countries, they impact how state and federal representatives vote regarding health care. And in my experience as an advocate, if you don't understand what those federal and state laws are, you're at a big disadvantage in understanding the type of problems that your clients are encountering, as well as understanding the business models that hospitals or medical centers and physicians and physician practices, how they operate. There's... We have private equity involvement, which never existed now, where hospitals and health care are truly in money-making business. And doctors experience direct interference with how they treat their patients. Yeah, absolutely. And they are told by their superiors in health care settings and doctors at insurance companies what they can and cannot do. Yep. And also the health insurance companies are making calls, you know, because this is a privatized business and they've made it about money, which as you and I have discussed at Nauseam, living and dying should never be about money. It's just... It doesn't make any sense. But, you know, when your doctor says, "I want you to take this medication," and they send in the requests for it to get approval for it, and then what, you have your health insurance come back to you and say, "No, you can't have that." And even when you go and fight, it's ridiculous. I just had to do a whole thing with Prolia, which is for osteoporosis, osteopenia, osteoarthritis. Okay? Those three, that's all it's been created for. That's what Prolia does. It's an injection and that's what it is. And they said, "Oh, well, you'll be using it off-label." I said, "Which part of off-label is osteoporosis, osteopenia, and osteoarthritis, which is in the records in my chart along with the X-rays that you're looking at?" Well, no, we think that you should try this pill first, which made me sick, which didn't do anything. And you're just like, "Why is a skilled specialist being overruled by a health insurance company about money so the CEO can have another boat or another house in Aspen?" I don't know. I mean, I hate to be flippant there, but you have to keep asking more questions and persevere, and there is a way to do it. You know? I don't do those calls because that's not my temperament. So thank God I know the Lisa Berry Black Sox and there is a group of amazing people that can fight that fight. I choose other fights. I choose different ways to use my skills as a patient advocate because I've been a doctor's daughter and worked in his office and knew what skills and what questions that I thought, "Gosh, I wonder if people know that saying that you're compliant, if you don't understand what a doctor's asking you, you're not dumb. You're not stupid. You just need it refrained." And so I have no compunction to sit with a patient as they're being told a diagnosis or a new way that the doctor wants them to try a treatment and watch somebody's shoulders go up and have to sort of interrupt and say,"Dr. Smith, I think Ms. Jones is not understanding what you're asking her to do. And I've discussed this with her and she really would like to be compliant. Could you reframe that for her?" And you get pushback sometimes, but it makes a difference if the person, the patient, the caregiver understands what's being asked of them so that they can walk away and go, "Okay, I can do this for the next six months." Because if you don't understand, then you're just going to go home and look at whatever that list says to you and go,"Well, I don't understand it, so I'm just going to do what I do." And that sounds right. And I think that there is also nurses that are patient advocates. And when you speak to a nurse that's a patient advocate, they also have a role because of what they've seen working in hospitals, in doctor's offices with patients over sometimes decades. They transition to other careers and become patient advocates. You know, I always think of a couple of them that you and I know. You know, Anne is a perfect example of a brilliant woman who saw an opportunity to use her knowledge and advocate and be able to sometimes circumvent because of what she knows. There's even doctors that are patient advocates. There's lawyers that are patient advocates because they've seen holes in the cheese and they've gone, "You know what? I can help here. I can help with insurance. I can help with estate planning. I can help with this law that we have in the state that we're in or that you live in." And that makes a difference. And I always hope in my corner of patient advocacy that that patient and the caregivers around that person walk away being more advocates for themselves than they thought they were. Agreed. Right? You know, to have someone who can help you fight the fight means a great deal. We work on sliding scales, many of us. There's lots of ways to do this. There are patient advocates in hospitals, but I'm going to, and if I get pushback, that's fine. They have a job to do, which is report to the CEO of the hospital. So it's a little different because they're working to help patients in regards to advocating to leave the hospital. And you and I know it's never good to stay in the hospital really long because there's lots of germs. I'm not going to support that. But they have a different role. But you and I being independent and working as patient advocates can take on the support sometimes differently. And that doesn't mean there's not. There's no question. I mean, we are accountable only to our client. Whereas a nurse or a doctor in a medical center is accountable to their supervisor. And unfortunately, the supervisor is primarily concerned with the bottom line for the hospital, which is why so many physicians are not making nearly as much as the administrative or the C-suite staff for medical centers. And it's really pathetic when you think about that there are patient advocates who earn more than physicians on an annual basis. Which is insane. Yes, it really is. That I mean, as wonderful as that is for certain advocates like myself, I think it is a terrible disservice to people who go into medicine, who sacrifice a lot of years, a lot of sweat, a lot of money, a lot of energy, because they want to help people. Only to find out that the only way that they can get hospital privileges is to be hired by that hospital as an employee, a hospitalist or a subcontractor and have to be accountable to an administrator. I can't tell you, you know, I even though the majority of my practice is remote, I do some in-person advocacy. Most of that has been accompanying people in the hospital and staying with them in the hospital 24 seven to make sure that whether they have them on patients who have undergone a surgical procedure, that everything goes right, that they're not being pushed out the door too soon. But when the same doctors and nurses come in and see you there, you know, two, three, four days in a row, they will talk to me off the record and want to know what is it that I'm doing and how is it feasible? How is it? Does it make any sense that I literally would not leave? And when I explained to them what I do, and that I understand what they do, and under the constraints that they do it, there are many of them who will say, if I knew that this is what my professional life would be like, I feel and become more comfortable making decisions and how people feel that everyone's actually learning and lenses of how their senses are in the heart and so on and so forth, that's very useful. to them what I do and that I understand what they do. And under the constraints that they do it, there are many of them who will say, if I knew that this is what my professional life would be like practicing medicine as a physician or a nurse or a therapist or a case manager, I never would have pursued this line of work. Yeah. And that's the thing. To leave this first talk, Lisa, because we will talk again, we need to talk about HIPAA next because what is HIPAA? Why does it exist? Why do you need to understand your rights? And why were we given rights? And I want to advocate for that for our patients. That's what you did. You advocated because the patient has rights and that can't be subterfuge. It can't. And they're busy in the hospital and I got it, but you know what? Tell me where the warming blankets are. Let me know where the ice chips are. I'll take care of these things that you don't need to do as a nurse and alleviate some of that for this patient if I can help you. But I'm here to make sure that this person, this patient, this loved one is taken care of. That's exactly right. Well, I really appreciate that you, if this late hour, at least and I are night owls. So we're doing a very late night talk because we're on different sides of the United States. But the point is that patient advocacy is not just one conversation, it's many. And Lisa and I will continue over time to talk about more and more, but she's gonna go take care of her dog who has his own advocacy needs. So I really appreciate your time as always. And anyone who wants any information, please grab me at michellenavigates at icloud.com. And I can also give you information about Lisa and her Soul Sherpa company because I adore Lisa and guide people to Lisa as well and have been guided by Lisa myself. So this is an opportunity for anyone out there dealing with a chronic illness, a chronic condition, a chronic diagnosis, to start learning how to fight the good fight and get the best quality of care and life that you can get. Thanks so much, Lisa. Thanks, Michelle. Thanks for tuning in to this episode of Beyond the Diagnosis. Is something we talked about today resonated with you. If you're craving deeper understanding, better support. We just wanna know you're not alone on this journey. Make sure to subscribe to my free sub stack at michelleweston.substack.com. N-I-C-H-E-L-E-W-E-S-T-O-N.substack.com. That's where I share personal insights, expert takeaways and extra resources to help you stay informed, empowered and one step closer to the clarity you deserve. And if you found this episode helpful, leave a review or share it with someone who needs to hear it. Your voice helps this message go further. Until next time, keep asking questions, keep trusting yourself and keep going beyond the diagnosis.(Soft Music)