The Patient Experience from Both Sides: Anne Llewellyn on Advocacy, Illness, and Hope

In this episode of Beyond My Diagnosis, I sit down with Anne M. Llewellyn, nurse leader, patient advocate, writer, and creator of Nurse Advocate. Anne brings more than forty years of clinical experience and a deeply personal journey through central nervous system lymphoma, brain tumor treatment, and rehabilitation.

We talk about the emotional shock of hearing “you have a brain tumor,” the critical role advocates play when patients cannot think clearly, and the importance of strong communication inside a healthcare system that is often chaotic and overwhelming. Anne generously shares what she learned working as a risk manager, why hospitals can be dangerous without proper oversight, and how patients and families can stay safer by asking questions, documenting care, and understanding care transitions.

This conversation is honest, powerful, and grounded in both professional expertise and lived experience.

In this episode, you will learn:
 • How to advocate for yourself or a loved one when facing a serious diagnosis
 • Why hospitals can be high-risk systems without informed patients and caregivers
 • What Anne learned as a risk manager reviewing medical errors
 • How she survived a central nervous system lymphoma diagnosis
 • Why caregivers are essential when patients cannot comprehend care plans
 • The importance of community, documentation, and speaking up
 • What patients need most but rarely receive

About Anne:
 Anne Llewellyn is a registered nurse, case manager, educator, and patient advocate. She is the founder of Nurse Advocate, where she supports patients and caregivers with education, resources, and insights learned from both her clinical and personal experiences. She lives in South Florida and continues to write, speak, and educate about patient safety, advocacy, and healthcare navigation.

Anne’s Links:
 🌐 Website: https://nursesadvocates.com/
📘 Facebook: https://www.facebook.com/nursingadvocates/

Transcript

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(Music) Hello, this is Michelle Weston with, well, ways to fraud beyond diagnosis, ways to be an empowered patient. And that's what I wanted from this podcast. One of the things that's important to me as a patient advocate, as a navigator in this weird healthcare landscape, and as a health and wellness coach, is that I can help empower people to become their own advocate. But that also means that I'm gonna have guests that are going to educate us, because they're experts in different fields, to use integrative tools, complementary tools and strategies for living with a chronic condition. We're looking for quality of life, but that also reflects in how you, as a patient, choose your doctors, work with your doctors, understand insurance. Don't get scared of language. Sometimes say, you know what, I need you to reframe it. So I have one of my favorite people, Anne-Louin is one of the leaders in patient advocacy. She's been doing this for a while. And even though she's stepped back a bit, because she's now in Florida, I felt that you guys should hear from this nurse. So I'm gonna qualify that as well as nurses are probably a patient's best advocates, yes, doctors are. But I'm gonna go with, if I had to choose between healthcare staff and healthcare teams, the nurses listen the best. They take the best notes. They make sure, especially if we're living with chronic conditions, that things get into charts. Doctors listen, but they aren't always putting their fingers to a keyboard and remembering all of the details. And yes, a lot of you out there are thinking as listeners, well, Michelle, sometimes when I'm in a hospital or having a procedure, people sort of disappear. Well, because people are overworked in the healthcare staff now. So if you had someone who is in your corner, who could help you navigate, I think that those of us living with chronic conditions would feel a heck of a lot better, right Anne? Sure, well, thank you Michelle for inviting me to come on to talk with you. We've been friends for a long time, colleagues, since a number of years. I don't know what number of years. And we met in Chicago after I just finished. And you are a leader in knowing how to make this work. I also want you to share with where people can find patient advocates, because you and I are listed in directories. We're not like we exist. Right, well, I'd like just to start with telling my own story. And as Michelle said, I'm a nurse. I've been a nurse since 1973. As a practical nurse, but then went back to school and got my lawyer. And went into many different avenues. Nursing opened a lot of doors for me, which I'm very grateful. But it wasn't until 2014 when I was diagnosed with a brain tumor. Wow. That I became a patient. And I had never been a patient. And even when I went to decide to become a nurse in 1973, my parents were very leery. Are you sure you want to do this? Are you going to like this? I've never even been around sick people. Wow. Let alone been sick myself. We never really-- thank God, at that time, 1973, really, both my parents were healthy. Aunts and uncles were healthy. Yeah, I found one. Yeah, and so I didn't have any experience. And I said, well, I want to try it. It was only a one-year program for a practical nurse. And I thought, well, what do I have to lose if I don't-- I don't like it. It'll just be one year. I didn't want to be a secretary, which was the route I was heading. So this was the second best alternative. So fast forward to 2014 when I was diagnosed with a brain tumor out of the blue. I mean, I wasn't even having any headaches. It was just came-- I had a little car accident. And my husband came to pick me up. And he said, you don't look right. We're going to the hospital. And I think I might have had a seizure that caused this-- I hit the car. The way that you hit the car. OK. And it blew the tire out. So that's why he had to come. But went to the ER, had a cat, told the doctor what happened. Let's do a cat scan. You have a brain tumor. I mean, it was like, what? He's Louise. So anyway, fast forward, got treatment, got into-- I was at the University of Miami Sylvester Cancer Center, which was-- I felt comfortable. I felt comfortable. But let me tell you, I was not cognitively aware of what was happening to me in the beginning. And my husband, thank God, was there as an advocate, as my husband. But also, he was there to help me get through this. And he did. And he has no medical training. He was by training-- But he was your-- you know what? But when you have a partner who is aware that you need an extra voice, that means a lot, right? Yeah. And when that-- yeah, right. And because they become a caregiver in that moment, it's like, I have to switch roles as your partner, as your husband. Yeah. And I have to speak out for you because I'm concerned. Yes, he was in shock, too. So anyway, it really-- thank God, I was very lucky. A good hematologist, oncologist got me on a good plan. Had chemo. It was an inoperable tumor. So the only option was chemo. And he didn't want to have to do radiation, which he would have had to do if the tumor didn't respond. But my tumor did respond to the chemo. And I had a very good result. Thank goodness. Good outcome. It was a tough road. Believe me, it was not easy. Six, eight months of chemotherapy. But with my husband there and with friends that I had, other colleagues who were narcissist case managers, they would be there for him. And one thing that he did, which really helped with communication, was sign me up for-- it was an online program that people could write. He could put updates. Caringbridge, it was called. Caringbridge. It's still around. Love Caringbridge. Absolutely. And it was very, very good for him because he would be at the hospital all day and then come home and everybody would be calling my brother, sisters, his family. How's she doing? What's going on? And so he had to, instead of repeating the story five times, he would put it on Caringbridge. And that helped him because he couldn't believe how fast people responded to the pose of what he said. And it was comforting to him to have that reassurance. People were praying for me. And it was just good. Do you think that as the caregiver with a wife with cancer, Caringbridge is not just good for friends and family, but it's also good to connect with other people with cancer with a chronic illness, correct? Well, Caringbridge really is for your support team, for your people who want to keep up to date. But there are other support groups out there for everything. And I follow a support group. Now I'm not a spinal cord patient, but I take care of spinal cord patients. And I'm in a support group for them through Facebook. And it's really very interesting the things they bring up, the things that they're worried about. And it helps me be a better advocate taking care of someone like that. Because then I know I can't, I mean, I've not, thank God I'm not a quadriplegic, but people who are and they get the support from this other group, it's helpful. Because you feel like you're alone out there many times. Yeah, I felt like that when I got diagnosed with MS, you know, at 38 it was, oh my God. And I only had one friend and I actually had stepped in her wedding. And two years after being married, when she was living in Chicago with her husband, going to ophthalmology school, she was a radiology technician. And suddenly, and also a dancer, like went to Michigan State University for a dance. So this is a very active human. Suddenly she had symptoms that led to a diagnosis of MS in the 80s, which is way before we had, right? We did not have the DMTs, the disease, amount of spine therapies that we have, Abenex and Betaserin and Copatsin, which were the first ones in the 90s, like 95. And I had a different journey, but thank God. First, you know, when you're given a diagnosis that is no cause, no cure, like MS, like multiple sclerosis, it scares you first. You're not a human, you know, maybe you weren't scared, but I was in my 30s and suddenly I was given a diagnosis that changed the course of my life. You know, suddenly I couldn't use my fingers. I had droplet, I had ophthalmitis, I had MS band, I had incontinence. How am I supposed to live? Like how am I supposed to do this? And, you know, never for the grace of God, I was able to reach out to her. She's doing, by the way, very well, so thankfully. Yeah, I'm sorry. Yeah, well, I use a lot of integrated tools. You know, you wouldn't know that I have MS. I'm sort of one of the invisible illnesses, okay? So unless you see me walk in the afternoon, you'll think, oh, did you have ankle surgery or did you hurt your leg? But going back to that, you know, the National MS Society is very important as a tool for research and also to help people, especially newly diagnosed, right? So with your groups like on Facebook, and which is the one that you're talking about for a spinal cord industry? It's on Facebook, it's the Spinal Cord Support Group is what it's called. Okay, because, you know, I love, if somebody out there is dealing with this or knows someone, Facebook is easy to get to and, you know. Another good one is patients like me. Oh, I like patients like me too. Yes, me too. I like patients like me. And that's a good one because you can pick your diagnosis or, you know, choose the one that applies to you and then you go into groups of people. But, you know, I think the point that we're trying to get out here with this podcast is that we can be our own best advocates. And we need to do that. Now, there are people who you can pay to be an advocate and help you through this. And you might need them at one point, especially if it's a complicated situation and you just need somebody to help point you in the right direction, get you into appointments that might take three months wait when they can call, and they get you in in two days. Now that's what an advocate can do for somebody. But with a long-term chronic illness, we have to learn how to take care of ourselves. And we have to remember, like you said, to use your voice. So where my energy is today, and I know yours is too, I think that's why we're still very close in touch is helping people, the general public, whether it's you yourself as a patient with a chronic illness or a family member, a neighbor, to really help them sort out things. Maybe they need a ride to the doctor. Maybe they need you to help pick up their medication because they use their transportation for the visit and then they have to go back later in the day to get the medicine. Just neighbors helping neighbors, people helping people. But the patient and me as an educator and as an advocate have to educate people, empower them. Don't be afraid to ask for help because people wanna help you and they don't know what to do unless you tell them what you need help with. They don't wanna interfere with your life by stepping in where you might not want them to step in. So think where you need help and where you could use some support and then you enlist those people to do that. So how do people look? Let's talk about how people look for patient advocates because we talk so much, but there's also websites and directories that I would prefer the people look to for-- Well, you know, it is. Certified patient advocate, I prefer that. Right, right. And we are like a needle in a haystack starting to get a little clearer how to find us. But there is a national certification-- Wait, and we're also not competitive with each other because there's such a need for us. There's nurses, there's doctors, there's people who went to school for patient advocacy and got a master's. There's people who were caregivers or patients themselves and went, even lawyers, that decided to take this on. You're gonna talk about BCPA, so go there. The Patient Advocate Certification Board is the organization that developed a certification for this field. And it's been around since 2009 and the first exam was given in 2010. We now have about 1,500, almost 2,000 people who are advocates. It's Hack Board PACPACB.org is the website. And Michelle, you can probably put it with these notes. I will. But the website, there's a page on there. If you go to support, it'll say, "List of BCPA's." And you can sort by state to find a patient advocate, a board certified patient advocate in your area and find that person out. That one person might be not the right person for you because they may not do what you need, but you can at least ask them for how do I find a patient advocate that does medical care coordination or they can help you with my bills because I'm getting-- Yeah, because I don't do bills. I mean, do you do bills? I don't do bills. I hand people off to Lisa, to Lori because they're much better equipped to handle that kind of conversation. I get, because I'm a patient and I'm a doctor's daughter, I get annoyed. So it's better that somebody has that patient language. They also have language, right? Right, and they might've worked in a managed care company and understand how bills are processed. You get out of the hospital and you, everything's going well. You're discharged, you're doing better. You might be able to go back to work. Then bills start coming in and then you're like, oh my God, the hospital bill is $50,000. But it's not, right? But it's not because you and I know it must go through three cycles. Do not touch that bill. Do not send $5,000. Do not pay it. This is why we also, I'm gonna cut in, I'm sorry, but now that we have, and New York was one of the first, we have the ability to write to Albany, New York and say, this is a surprise bill, right? Do you think, gosh, do you know how many states now have the ability to write to government? I don't offhand, but I'm sure most people. I'm sure most too, but that is the point. Don't pay the bill until you get your explanation of benefits from your insurance company. And that's that EOB that you see in your insurance. You know, when you sign up for insurance, even if it's to your company or I'm an independent contractor, make sure you read. I'm sorry guys, but you have to read. You have to understand I have a $600 deductible after I pay $40, $40, $25 for all my specialists and my primary and blah, blah, blah. Until I reach that 600, what's gonna happen? I am going to have to pay that out of pocket. So be aware of what it is. Don't like-- Well, you know, Michelle, and today, people are getting high deductible policy. Mine just went up, thank you. To keep the premium low. I know when I was on a support group for cancer patients with Sylvester Cancer Center, they have, you know, some people are coming in just being diagnosed with cancer, going to Sylvester for their first appointment after being told by the surgeon and then the path report comes back. You know, you have breast cancer and they're going to University of Miami or any other hospital for treatment to see an oncologist and they say, "Well, you have a $10,000 deductible. So we need you to pay$1,000 for this visit today." You're like, "What?" And this is on top of just being told that you have breast cancer or whatever other condition-- Chronic illness, absolutely. Whether it's diabetes, whether it's MS, whether it's rheumatoid arthritis, all of it, including cancer. Right, so as a consumer, knowing that you have a $10 deductible, you have to put some money away to pay for the care until you reach the $10,000 deductible. So when you're looking for insurance, sometimes paying a higher premium will give you a lower deductible and make it easier to get your care. And that deductible is an annual deductible. It's not a lifetime deductible. No, it's a yearly annual deductible. And with our healthcare landscape right now, in this administration, this is why it was so important that we created the ability for people who couldn't get insurance that didn't make enough money, were independent-- Qualified for Medicaid. They couldn't qualify for Medicaid, weren't at Medicare age. That was so important, what happened with Barack Obama, and some people call it Obamacare, but what's important-- The Affordable Care Act. Yes, the Affordable Care Act. It's so important. That's why, Anna and I were talking, that's why, am I right for HIPAAs? HIPAA is 80s, end of the 80s, we got HIPAA? Yeah. Yeah. Yeah, and HIPAA is your rights. Don't just sign that when you get it every time they give it to you. Take the time once to say, can I have a copy of that? Sit down and read it. I'm not being flippant, I'm not being a teacher, but I'm telling you it's so important for us to be educated. No, and all these documents that we get, and you're at the registration desk and they're telling you, sign this, sign this, sign this, what am I signing? You know, you learn-- I always read it. I will not, I will not until I literally read it. They're just like, well, it's the same. I said, that's nice. Yes, and you don't go to a car dealership and buy a car, and they come in and tell you, here's all your paperwork, we have to fill this out, and then you'll be able to get the car. Well, what am I signing? What am I promising? What am I telling I can do or I can't do? And you know, so in healthcare, we treat healthcare different than any other service that we take advantage of in our country. Unfortunately, it's under-predatized insurance, which is the nemesis of United States of America. Yeah, it's all about money. It's all about money, but-- Which it's not, it's about living or dying. You and I know it's about living or dying and quality of life, that's what it is. Right, and so when you are diagnosed or you have a chronic condition, you know, you have a, like I walked into an ER, perfectly fine, I thought, and then was told I had a brain tumor, I was thrust into a whole system that was, it wasn't new to me because I'd been a nurse, I worked as a case manager now, and that's why I became a patient advocate. You know, I switched from case management was where I worked with insurance companies, I worked with hospital systems to help coordinate care for the people who were in those systems. As a patient advocate, an independent patient advocate, my loyalty, my allegiance is to my patient to help them get the best care, and my allegiance is to educate them. We try to work ourselves out of a job because we want to educate you and-- Absolutely. You can take care of yourself and you can ask the questions. I've really started over the past few years, whenever I call an insurance company for a patient or their family member, if they're not the, whoever my client is, it could be the son, but it's for his mother. So whenever I call an insurance company or get equipment set up, I try to have that patient on the phone with me so they can hear what I'm telling or talking to the other party about. Because that's what, that's where they learn to say, well, we need, I need to get an MRI, and you're calling the insurance company to find out where you should get an MRI because you want to go to an in-network provider. Your doctor's gonna give you a prescription for an MRI. Does he care where you go? Well, he probably wants you to go to the hospital he's affiliated with, but is that in your network? Is that within the providers that you can go to and be covered? If you go outside of that network, because my doctor told me to go there, well, it's not in your network. And it's our responsibility as the patient, as the person who is getting the insurance to follow those rules. And as I think you started to say, Michelle, when you get your insurance, read your member handbook. Please, please. And here's that card that you have, it always says on the back of the card is the 800 number to customer service. They're in place sometimes 24 seven to answer your questions. So don't be afraid to call up and say, my doctor wants me to have an MRI and I live here. I don't know where to go. Can you help me? You don't get, they'll look under your, get your name, get your date of birth. Your plan, what plan are you under? You used to have some gold, silver, bronze, and sometimes it's a, you know, is it a P, you know, a POA. What's your plan? Because it's different. If you work for a company and they organized it, they're going to be different. You need to educate yourself, right? Yes, take responsibility for it. I think that's really what we have advocated because we think the insurance company will do it. No, and even the- And we think the doctors should do it. Even the doctors, we hope they will, but we should always make sure. I will say here in New York, and I'm very fortunate to be here, we have a lot of teaching hospitals. So they're very good at making sure I get my MRI at NYU Langone. Cause it just makes it easier cause then it goes into the system. Now today we have portals like MyChart and Epic for the doctors. So different hospitals can read things. So you give permission. So if I'm going to New York Presbyterian, okay? Or YLHorn now. I can give permission for that hospital, thusly another doctor to look at my file. That's really important. These are the things now that make it easier for us. And, but it's education and it's the willingness to not do this, right? And the more you go into your portal and look at things, the more comfortable you're gonna get with it. The portal is really our, and that was a goal under Obama again, when they had the Affordable Care Act. But it was the affordable, I forget what it was called, is when we had the crash in- 2008. In 08. And they made it a rule that doctors, hospitals, all had to have patient portals. Yeah. And I think it was smart. I think it was smart. Yeah. Right. But we never taught people how to use them. You know, we could stay, the portals were established and then, okay, you're on your own. Electronic health records. So before you go to your doctor's appointment, you might wanna go in your portal and print off the last note of your doctor, the primary doctor, your specialist who you went to, and bring that note with them. So they have some history of you. And because they're looking at you blind, and you may answer questions, you may have the knowledge, but you may not. Bring all your medications with you. And you go in a point- Or do a list. I have a list and I update it. As soon as there's a new script or one falls off, I really try, after 24 years at MS, I try and keep that up to date. I put in the upper right-hand corner, what date as of, so that when I go to- Or date stopped or date stopped for medication that you're not on anymore. Exactly. Yeah. That helps that doctor who you might be going to for that condition to know we already tried this drug. It worked for a while, but then that's why I'm here today, because it's not working. Or I'm having side effects from it. So by the more you know, the more you can communicate to your providers. You are the patient, you are the central person of the healthcare system. I know it doesn't seem like it all the time, but you really are. And if your input is critical, your doctors don't know you're having problems until you tell them. Yeah. Don't wait until your next appointment to call them and tell them what's happening. Because then I talked to a lady yesterday who was in the hospital. She's a good friend of mine. And she was not doing well under doctor. They were doing a lot of outpatient testing. She was getting worse. And they finally did blood cultures where they found out that she had blood bacteria in her blood. Wow. And she had to be admitted, but she kept on it. As soon as one thing they would try antibiotics or oral antibiotics, it wasn't the right antibiotic to treat this infection. So it wasn't going away. But if she didn't call, waited for the month to go by to go to her doctor, then we would have been in, she would have not gotten the right care. And it was, I think she avoided a septic episode by doing that. By calling her doctor, I'm still not feeling good. No, did you get the blood cultures back? Did you get this back? Oh, and then he looked at it. You have to get to the hospital. We have to admit you cry in the antibiotics. So we- And that's what happens sometimes. I mean, you know, understand that that's why, I also want to make one thing clear to people as well. Yes. Yeah. Yeah. We, you know what? It's a lie and that's what it is. I hate a lie. It's very scary. It's very scary. I mean, because, you know, when people are sick, they don't feel good. They don't- No, it's not what they should, right. It's not what they should have to deal with. I've sat in places, I was at the rheumatologist over at NYU Langdon. A daughter flew in from London, England to protect her mother who had RA and her mother had received one of those threatening letters and she paid five grand and her daughter, oh my God, her daughter was so upset. And she's talking to someone at the counter at NYU Langdon. Who works for NYU Langdon? So yeah, he's like, well, you can't get that money back. And I just went over and I said, I'm sorry, but I'm gonna talk to you for a second. I'm a patient advocate, here's my card, I exist. You need to take this to a surprise bill and you need to go after them through Albany because your mother who is in her 80s was really, really mishandled. And once you pay them though, you paid the bill. And it is very, very difficult to get that money back. I said, it may not be coming back to you, but you need to then have that money applied to things going forward for the hospital. She goes, oh my God, I need you to do this. I said, if you don't use me, it's fine, but I'm watching you who I'm hearing came all the way from London and that's not fair. And let's recap, this has been great, but I think we should take them and give the listeners the bullet points so they know what to take away. Okay, I agree, I think, and I think we're on the same page with this. So our recap is that we want you through our ability to educate and empower you, your family, to be your own best advocate when you enter the healthcare system. It's very important that you are an active participant in your own health and healthcare, your insurance, picking the insurance that's best for you, not what the broker is gonna make a commission on. So it is important that you get a good broker who works with all lines of insurance. And if you know where you live and they can look at the policies that are offered in your area, that's the first thing, the good, a good broker. You should read your member handbook when you get a new policy every year after open enrollment and you have new additions or benefits are taken away. Read that member handbook so you know. And let's remind them that because those member handbooks became so expensive, they're going to be online, but don't be distressed about that. You can always put it into Google Doc, take that picture, put it into Google Doc of the pages that you need. And if you work with a health insurance broker, they're going to also send you pages of, when you're looking at different plans and they can also download and send you the pages that you need for your EOB, your explanation of benefits and what you're going to be paid for the year. Okay, guys? And then the other thing is, when you get any medical bills, first of all, do not pay medical bills when you get them at the first site. You should review your bills. You should make sure it was you who these chargers are about, that you did go in the hospital if it's about a hospital bill because-- Or a procedure. Or a procedure because mistakes are happening and it's human for that there's going to be mistakes. So you don't want to pay, you get a bill that says pay $4,500 for this hospital stay. And you say, wait, I wasn't in the hospital. It could have been billed to you by mistake. So you need to really look at the medical bills and then wait until your insurance company decides what they're going to pay because the provider should have filed that bill with your insurance company if you have it. Those of us on Medicare and with a supplement, Medicare pays 80% of the bill, the supplement pays 20. So you shouldn't have to pay anything. So that means that there's cycles. I say to people, and I think you do too, Anne, it's at least two to three cycles. I like three cycles. So just make sure that the hospital or the doctor's office had paid what they need to pay or the center has paid for what it is. Then that 20% of its Medicare has picked it up. So it really is dealt with. It's not gonna be you getting surprised and getting billed. And we mentioned surprise bills too. Now states are having a surprise bill. The government in your state, you can send the bill up here. In New York, you send it up to Albany and you say, this is a surprise bill. I did not expect this bill, especially if Anne was mentioning, if you got a $4,500 charge on your bill and the hospital or the doctor's office is saying, you owe us this, if that wasn't even done, you really need to send that off because that's what is protection for you, okay? Right, very important to be aware. And that's why we're saying it'd be active participants. Don't just take things for granted because the doctor told you, confirm it with them. If it doesn't sound right, if it doesn't sound logical, ask and repeat until you understand it. Always take somebody with you to your doctor's appointment if you're in the hospital, have them come when the doctor visits you. So you'll hear, everybody will hear the same thing because there's a lot going on. And when you're sick, can't keep everything straight. So bring a copybook, notes, states when you saw somebody, what they told you, what you need to do as a result of that visit. And if you have an advocate with you, they'll help you do that. And a family member or a paid advocate if you need it. We wanted to give you a website, two websites actually. You can put in patient advocate certification board, that's the patient advocate certification board that certifies people to be board certified patient advocates. If you just put that in Google, it'll come up and you'll be able to look. And that's where you'll see about 1500 different advocates around the country who you can connect with, see what kind of business they do, what their specialties are. And they can help you find an advocate. If they can't help you themselves, then they will refer you or help you find someone through their networks that they know of. And the other one is greater national advocates now. That's GNA now. GNA now. And that is a free service where you can actually look for an advocate yourself. All you have to do is pick, you want a medical advocate, you want a billing advocate. And they're in .com..com and then you would find the app, put the zip code in where you live and then advocates in your area would pop up on the screen and you can make introductory phone calls to find out what they do. If they work in the specialty area you need, what their costs are, and you can compare and contrast different advocates. Again, we talked about I as an advocate, I live in Florida. I could work with Michelle. If she called me and say, "Anne, I'm really not doing well and having a lot of problems, I really need an advocate." And I would say, "Sure, Michelle, I'll help you. Let's talk about what you need." And then I would make some phone calls, do my research, talk about what she needs with other people and come up with some ideas that she can consider. Advocates don't make decisions for you. Advocates give you the information so you can make an informed decision. And that's something that you should insist on. You're not hiring somebody to tell you what to do. There's plenty of people who do that. You need people to help you make it. And that are in your corner, that are trying to help you. And the other thing, as I mentioned, Anne, because you're a nurse, if you're going in to hear a diagnosis or you're getting your yearly conversation with your doctor or your specialist, I always sit behind the patient to take notes when we're in the doctor's office, because I'm watching for body language for my patient. And sometimes when I see those shoulders rising and then the doctor is at the end of his short time with you, which always sucks, but welcome to 20- 25. Yeah, 20-25 right now. And it'll be the same going forward. But I think when the doctor says, "This is what I need to do." And I see the patient go like this, which means they're saying they're gonna be compliant. If I don't think that you understand, I am going to interrupt. I'm going to say, "Dr. Jones, I don't think Ms. Smith is clear on what you're asking her to do for the next six months." And I know from our conversation, she really would like to comply with what you're asking her to do to feel better. Can you reframe that for her? You may get pushback, the patient advocate may get pushback, but more than likely the doctor will want that patient to be compliant, will want that patient to feel better, come in less and really do the things that they're asking on a medical basis. So take that time and let, sometimes you just need a reframing. If you're with a family member, say, as the family member or the caregiver, "You know what, I don't think Anne is clear on this. Could you, Dr. Jones, reframe that for her because I know she really wants to take your advice." Right. And the other thing is to, walk away with information. If you have to have tests done, why are those tests being done? And will it change your impression? And also talk to your doctors, tell them what's happening to you. They are not mind readers. No. They need you to tell them, you see them for 15 minutes, maybe once a month, every three weeks. You're with yourself 24 seven. So talk to your doctors about what your experience of-- And write it down, yeah, write it down or put it in your iPhone under messages. You have the ability to put it under notes, put it under notes and put a date. And then when you feel a little overwhelmed, and something's going on during your appointment, you can say something to the nurse. You can say something to the doctor. So everyone's on the same page. Right, yeah, it's really communication. And this is probably what's wrong with 90% of our world. We don't communicate well. So we have problems. So you as the patient who is really the center of the whole healthcare system, and we say that, and I'm not being smart about it, you really are. It has to be about you. Absolutely. Saying that Joint Commission, no care without me. No care without me. If I don't want it, if I don't understand it, I need to tell you, the doctor, I need to tell the nurses. That saves on medical errors. It saves inpatient adherence. It saves on duplication. I didn't know you wanted me to get an MRI out of the head. I told the guy to do it on my chest, because I have chest pain, not a headache. Yeah. Well, the doctor, if he wrote the prescription wrong, they have to get clarification, and it happens. It happens every day. And that's why, yeah, and that's why in my chart, whenever I'm going to do an MRI or a procedure, they ask you questions again and again and again. You're gonna say, "This is at nauseam." They're asking too many times. There is never enough time in healthcare that you are asked. Please be patient. Count to 10 if you need to, if you keep repeating. I hate it. I agree with you guys, but we have to make sure that we're clear, and remember those nurses, they are your first advocate. They are gonna keep the best notes, and I want you to take advantage of that. When you have a, what are they called now? A scrawl. Yeah, a scrawl. And there's also the physician's assistant, PA, and then what's the other one? Nurse practitioners. And P's. Those are even more skilled. So that's a new person that's been added in that role. Take advantage of a nurse practitioner. Do you wanna know something? They can write a script. And they can spend a little more time with you than that, because that attending may have five different patients and the nurse practitioner is there to help him, but he may come in and talk to you, but then they leave. My best advocate when I was sick with a brain tumor was the pharmacist. Believe me or not. Me too. Me too. Oh my goodness, so protective. The attending physician would come around on rounds. He'd have five residents, interns, fellows following him, and they would come in and talk about me, talk about me. To me. Not to me. To me, yes, very important. Around the bed. And then as soon as they left, they finished rounds. The pharmacist for some reason always came back to my room and talked to me and asked me, did I understand what the doctor said? Do you have any questions? It was so reassuring. I agree. I still have a mom and a pup pharmacist because I know David will always explain things and he's caught things that will interfere with different drugs. And I thank God for him. Yes, yes. And that's what their jobs are. That's what their specialty is to know the medication. And supplements, right? And supplements and vitamins and minerals. Things interfere with certain things you need to know. Just like that weird thing about don't eat great fruit if you're taking certain things, certain medications. The pharmacist, a good pharmacist will know what supplements, vitamins, minerals will interfere with things. Right. Well, you know what, Michelle, we could be here for two more minutes. You know what? We'll recurveen and we'll talk about another part of this. But I thank you so much. I think you're such a great. Do you have a website that people can go to if they're in your area? Can you repeat that for them? I'll make sure it's up on my site too. Yeah, nursesadvocate.com. Perfect. And if you join, I do a weekly blog post and I really try to do similar to what we just did here today, educate people about in certain aspects of healthcare in a short little write up. But I love to get comments. I love to have questions from people. I'm sure Michelle, you get questions that could spur another discussion. I'd be glad to join you again. And it was fun. I love it. It was fun. Thank you for bringing me on today. It's been a pleasure and enjoy the sunshine and I'm gonna get back to work and helping people and you and I are here for you guys. We are here for you. We are. Thanks so much. Happy birthday. You too. Bye everyone. See you next time. Thanks for tuning in to this episode of Beyond the Diagnosis. If 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. M-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.