The MEN1 Mosaic

#53 - “Why You Still Don’t Feel Heard—And How to Fix It” (Private Patient Advocate & Medical Doctor)

• Lizzie Dunn • Season 2 • Episode 3

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Ever left a medical appointment feeling dismissed, judged, or totally unheard? - Season 2, Episode #53

I speak with Dr Elena Borelli, a former Doctor of Medical Science turned Private Patient Advocate. She explains what’s really happening behind the scenes when patients feel ignored, how medical records can perpetuate harmful bias, and what to say (and not say) in high-stakes appointments.

We also explore second opinions, how to prepare for consultations, and what to do if you’ve been told your condition is just too rare for care. Elena brings compassion, clarity, and an empowering middle path—especially for those caught between wanting answers and losing faith in the system.

What we cover:
– Why rare disease patients often feel unheard
– How to prepare for appointments that actually go somewhere
– The truth about second opinions and mislabelled records
– What to do if you’re feeling dismissed by a provider
– How private patient advocates can help (and when to get one)

For anyone navigating rare, chronic, or complex illness—this one’s for you.

About Our Guest

Dr. Elena Borrelli DMSC, MS, PAC is the founder of Pathway Patient Advocates. She has over 20 years of experience in the medical field in both clinical and administrative settings. Apart from her experience in professional practices, Dr. Borrelli has encountered frustration and discrepancies while personally navigating the health care system. Her passion is to help patients better understand the overwhelmingly confusing medical system. Dr. Borrelli has experience in a variety of healthcare settings. Her main focus is to assist clients who are dealing with rare disorders, cancer, or undiagnosed symptoms. It is her compassion, experience, and determination that set Pathway Patient Advocates apart from the rest.

Social Media Links:
Instagram: @pathwaypadvocates
Facebook: Pathway Patient Advocates
Youtube: Pathway Patient Advocates
Tiktok: Pathway Patient Advocates
LinkedIn: Pathway Patient Advocates
www.pathwaypa.com

Are you sure MEN1 can’t be influenced?
When I stopped just 'settling' for symptom management, I began carving a path to somewhere I believed impossible in MEN1: symptom-free, surgery-free, and medication-free. If you’re curious to see how I’m making this happen, join my community here.

Disclaimer
I share my personal experience as a MEN1 patient. Nothing in this episode, including the opinions of my guests, is intended as medical or holistic advice. Please consult a qualified professional before making changes to your care.

They feel unheard, dismissed by the medical system or gaslighted. Especially if their symptoms are very subjective. Sometimes pain can't be pinpointed or found on a laboratory test. They feel if they have one bad experience, it continues with them anytime they go to a medical appointment another thing is they feel like they're not getting anything outta these appointments because they don't even know what they're going in asking or what they're gonna come out with. So helping them better prepare. Sitting down with them ahead of time to determine, okay, what's our goal for this appointment? What are our questions? What do we wanna get out of it? 

  Dr. Elena Borelli is a private patient advocate, working closely alongside patients to get the best healthcare that they can for themselves. She shares essential information that all patients should know, including how to know when to get a second opinion, whether or not to tell your medical team that you want to work with other types of specialists, maybe even alternative practitioners. And when medical system errors  inevitably happen, how to make sure that it's not your healthcare that gets caught in the firing line. It's essential listening for any disease patient. Enjoy. 

 For anyone listening back who's not familiar with your kind of work, how do you help rare disease patients or patients in general?

We provide them with a very personalized assistance with navigating their healthcare journey. We help them come to a diagnosis, understand their diagnosis. A lot of times they'll have rare diseases that many people don't have resources for, don't understand, or maybe they don't have a local provider, or maybe they have a very common condition, but they're just not really getting it under control. Sometimes we'll help them finding second opinions, clinical trials. With insurance issues. Sometimes they know what they need, but they just can't get it covered . So really we're there for them and help them throughout whatever steps they need us to.

Am I right in thinking that you have a medical background yourself? That you might be a doctor? 

I'm a doctor of medical science. I've been working in healthcare for about 25 years. I started as a physician associate and then I went back and completed my doctor of medical science.

Congratulations, firstly. I take my hat off to anyone who practices medicine for so many different reasons.  That must give you such amazing perspective because you've got the knowledge and the experience of what it's like to be on the other side of the desk, but also, you are now helping patients to advocate for their needs. You must have a really special insight then and be able to bring forward.

I do like bringing that mindset into private patient advocacy. Being on both ends or having been on both ends is really helpful because I know the perspective that the providers see situations and I can help cross that bridge with the patient or client to understand maybe they're looking at it this way. How can we better communicate with them as a patient to make sure that we're all getting on the same page and we're all, helping each other work more efficiently and getting the end goal for the patient to what they need.

Most private patient advocates have a medical background. Some are doctors, some are nurses, et cetera. One thing I do always recommend is take the time to get to know the private patient advocate that you're gonna be selecting to work with, because everybody connects differently. So you might want somebody that has a little bit of expertise or experience in one area. 

When patients come to you and they need help advocating for their needs, what is the advice that you tend to give them? Because there's such an array of different things that patients are needing to speak up about, whether it's quality of care, whether it's, getting the right type of surgeon, whether it's making sure that you you can get a hold of their medication. Are there any general rules of thumb that you give to patients when you work with them? 

One of the first things I like to establish is what do they consider of their quality of life and what's important to them and what are really their goals, because if we know that, then we can work toward getting to what they want. Everybody defines quality of life differently. Sometimes they haven't really sat down to think about it either. So it's a nice starting point. From there we can go on to breaking down what the first step is. I really develop a very stepwise approach and we handle it like that. Depending on the situation, healthcare is very time sensitive, so we are often doing multiple steps at once, but it kinda helps keep us on task.

I love what you said there, quality of life because I think in the disease world and particularly the rare disease world, so many of the conversations can feel very, I don't wanna use the word negative 'cause I feel like that's such a black and white term, but it can feel very draining. It can feel very overwhelming.

It can feel like, actually, is there such thing as quality of life? In your experience are patient's unrealistic in thinking that they're gonna be able to have an enjoyable life with this disease that they're managing and the healthcare that goes along with it? Or do you think that's possible that actually there is still scope for, an amazing quality of life?

Oh, definitely. I think it's very possible. I have, clients that come to me where I say okay, tell me about what you do. What's your day to day, typical day like? And they're like I just lay on the bed all day 'cause I'm exhausted. I'm too tired. And that's definitely not the quality of life that they are want.

And so we try to shoot for the for the stars, understanding that obviously, we have to take it day by day and there's trial and error, but our goal is to get them to the best possible outcome and best quality of life that they can. I've had ton of clients that I've worked with where, months later, they're fully functioning and living a normal life, walking, working, enjoying their family and things like that.

In your opinion, what are some of the biggest challenges that patients face when they're working with you? What are the needs they have currently that are going unmet by the system as it is.

I feel like a lot of patients, especially ones that have rare diseases or chronic diseases, they often feel dismissed by the medical system or gaslighted. Especially if their symptoms are very, subjective for instance, sometimes pain can't be pinpointed or found in a laboratory test. And so they just feel no matter if they have one bad experience, it just continues with them anytime they go to a medical appointment and they just feel unheard, dismissed. I think that is one big. A common, issue that is repeatedly heard throughout my clients is, and sometimes this kind of comes from that first one, is that they feel like they, they're not getting anything outta these appointments because they don't even know what they're going in asking or what they're gonna come out with. So helping them better prepare. Sitting down with them ahead of time to determine, okay, what's our goal for this appointment? What are our questions? What do we wanna get out of it? And what's level of importance and things like that. Those are a trend that, is common.

You use the example of, someone's pain isn't measurable by a test or a reading or anything and what they're really looking for is for someone to understand them and say I really get what you're going through. And they don't get that from the medical professional. What is the medical professional gonna be seeing in that situation? Is it conscious, is the doctor trying to do that to them, or do you think there's some barrier there to communication? 

It can be a couple of different things. One is the fast-paced healthcare environment. Providers have sometimes 15 minutes, 20 minutes, 30 minutes, and then they have to move on. I know this as a provider myself, even if they want to spend more time with that patient and understand them, the system doesn't allow it because they have to move on. That often, leads to poor job satisfaction, honestly, from the provider side. That's just unfortunately how the system is. Also too, unfortunately, electronic medical records are very established now, and there's many benefits to it, but there's also some negatives. One of the negatives is that people copy and paste these records, right? So if one provider in the past had a negative experience and said, oh, this patient is making these symptoms up, or, it's all in their head, this note gets continued and continued to viewed and often copy and pasted by multiple providers.

Then there's the development of this incorrect information that continues through that chart. If a provider opens this chart and reads prior notes and sees that seven doctors all said the same thing, then while they in theory really should have an open mind and go in fresh with this new patient, they already are getting this pre-populated idea of what that patient might be like.

So I think that's a challenge. On many accounts for both patient and then also it skews the view of that provider. But what I like to tell patients is try to go in with a fresh slate and having me present at the appointments, typically I attend virtually, is a huge difference because I'm able to bridge that gap. I can relate to both the provider and the patient. So I'm that middle person that helps on both ends. If that provider doesn't make you feel like you're in a trusting relationship or if they make you feel dismissed, then maybe that's not the provider for you. Fortunately, we can find another one that does listen to you more and is a little bit more open versus just looking at old records. 

If a patient is at that point where, let's say they don't have a private patient advocate like yourself with them and they're sitting across from a professional and they feel repeatedly disappointed, let down, they're thinking do I persevere, maybe there's this I haven't thought about, maybe they have an intuitive feeling that this isn't the right professional, but they want to give it a chance. Or maybe they have to give it a chance because, there's no other specialist practicing in that area. Or it might require traveling. When those kind of thoughts flood patients and it's sometimes easier almost to do nothing. How do you encourage patients in that situation to do the difficult thing, knowing that ultimately it might bring them the better outcome?

I like to say, try to be honest during the appointment, so if you really feel like the provider's not listening. I think it's important to maintain calm and not start screaming at the provider or threatening them but really say something like I, I appreciate everything you're saying. I just feel very frustrated. I feel very overwhelmed. I feel like my, symptoms and concerns are not really being heard. Can we take a step back? The biggest thing that I will stress is if you are prepared for the appointment, meaning you've taken the time to prepare what you wanna get out of the appointment. I often have my patients use a appointment prep sheet so they have everything in writing. It gives them a time to think out what they're gonna say and what they what their goals are. But also too, they can bring it. So if they get nervous, they can always look and see okay, these are my top things I wanna get covered. I always have it listed in like level of priority. So okay, maybe you wanna ask like six questions, but if there's only time for two, what are your top two? And then you can always follow up. I think that gives confidence to the patient going in because they feel like there's a little bit less unknown. And then also I think it helps the provider because they do have more time for questions because the visit's a little bit more streamlined. Typically the visit's gonna start with, tell me why you're here. And the patient's like, oh wait, I don't know how I'm gonna explain this. If they haven't pre-thought of how they're gonna say that, it can get very very convoluted. As a provider. Sometimes you're trying to figure out, okay, what's the timeline of these symptoms? This patient's like, oh, I've been sick for 30 years. And they're like, okay. I don't know what to do with that information. Or a patient will come in and say, I'm just a mess. Can you fix me? Type of thing. It's great to explain that, but more detail is needed, that it's gonna be beneficial for both people. 

I'm getting here from this conversation that communication is so important and it actually is at the root of the patient practitioner relationship. Is that right? 

A hundred percent. Communication is always goal, I feel in just about everything in life.

You mentioned second opinions, right back at the very beginning. How many instances do you see where patients seek a second opinion or even a third opinion and it's necessary in from your perspective, that is the right move. Versus patients want to seek a second opinion because they don't like what they've been told the first 1, 2, 3, 4 times.

I think a second opinion is almost always a good choice. I see a difference in opinion that's been beneficial probably at least 80% of the time. The reason why I say I think it's almost always, if not always a good idea, is let's say you go to a second opinion and they actually give you the exact same advice and plan as the first one. That kind of solidifies that, okay. Then maybe it makes you feel better like to move forward. It's not just one person saying it and that second person might be explaining it different or give you a better understanding of why they think that's the best way to go. But I will say with chronic diseases or rare disorders or cancers, sometimes it takes more than two because I can't tell you how many times I've had patients that like have been told, this is a rare cancer you have, a couple months to live, by more than one provider, and then they go, and then the next provider, it's oh yeah, we can treat you. You're gonna be fine. So I always say don't give up. There's always different options and maybe, a cure isn't available, but maybe there's better options to manage your symptoms or to make your quality of life better. That's always the goal. Everyone's quality of life is different, like I said. So it's up to you. What do you feel is important  in your quality of life? What is the first thing that that you would pick? Some people want to try any medication, regardless of the symptoms, just to prolong their life. Some people want to maximize their quality of life so that they can enjoy that time with their family. Everyone has different levels of, what they're willing to deal with. What's important to them and what's not. It's so important to really listen and to see what that person wants.

How many of those, what often is called in the medical world, kind of miracle cases, where a patient has received, one, two, or three of the same opinion, and actually what's happened has been so vastly different. How many cases have you seen like that, that you've worked with or that you just know of?

Oh gosh, there's so many. That's why I really love doing what I do because it's just amazing. There's so much job satisfaction. It's definitely challenging because a lot of times these patients feel like they've been, keep hitting these brick walls but when they do finally get to a point where wow, this is working, and, it's a whole different world, it changes their life basically.

I don't even know a number, but it happens a lot. Hundreds. There's so much new technology, there's so much new innovation. There's so many new medications and other treatments coming out, there's so many different providers and specializing in things like that. One provider can't know about every single possible treatment method for one specific disorder, and so there's always limitations into the person, the doctor that you're seeing, or the provider that you're seeing. So that's why I say there's no harm in getting a second opinion or because you might find somebody that is researching or has research or has done this on a different patient that worked. I always say, research and knowledge and education is definitely key. When patients first receive their diagnosis, that can be such an overwhelming time depending on what the diagnosis is, how it's delivered, how clear it is.

Moving forward, what do you recommend patients do to make sure that they are making the right decisions from a place of knowledge and empowerment, rather from one of kind of fear or panic and needing to act in, in the first instance. 

Especially initially, it's difficult to understand anything 'cause one, you're overwhelmed, and two, the medical like terminology is challenging. I think even for people that work in healthcare. So it's hard to understand what things are and what things mean and these different words. For patients it's all a big jumble of things. Plus understanding the logistics of the healthcare system. There's different roles in healthcare. Everybody wears a lot of times the same clothing scrubs, many different colors, many different, coats and. I think, at least I know in the US, in the hospitals, every given day, there's at least 15 to 30 people walking in your room as a patient. So to remember who's who and what's what is very a challenging task in itself. And so once they get the information, I think it's important to really take the time to understand it and then write down questions that you have or have a family member or a friend or an advocate write these questions down and then ask the questions. There's also this kind of fear of asking questions because a lot of times patients feel like they're gonna be almost disrespectful or rude if they ask questions. And that's really not the feeling that in a typical situation you would wanna have, because you wanna have this trusting relationship to ask whatever questions that you want. You only have one life, right? So you wanna be able to, and it's your life. So your questions are valid and there's no question that's inappropriate to ask.

I think that's such a reassuring thing for patients to hear. I think we see, maybe mistakenly, we see the medical system as a hierarchy, whereas actually it's more of a service of support. So as a patient coming in and wanting to seek a doctor's advice or opinion, yes. Obviously they know more than me in their particular field, which is medicine, but obviously, we keep being told the patient knows a lot about themselves and they have to trust that intuition.

Absolutely. And I will say, the majority of providers actually enjoy explaining stuff. Being a provider myself, I don't get upset when people, ask questions. I encourage it and, I think in recent years, it's been a common practice to push, asking patients like, do you have any questions? Or, is there anything I need explanation for? That was definitely not the bedside manners in prior years. If you've had experience with healthcare years past and you don't feel comfortable or you don't have the greatest experience with the medical team, it's hard to have that faith or once you lose trust, it's hard to gain it back. And I have people all the time that will tell me like, oh, I don't like doctors, or I don't like the medical system. My own mother actually is very like, will tell me all the time oh, I don't like doctors. And I'm like, thank you. But she's just had bad experiences, in the past. And so it's understandable and I totally get it. But there is a better plan, there, there's a better option. Working together is great. 

Nowadays more than any time, maybe in the past, it feels like there's an inherent skepticism of the medical system. I think a lot of that is a combination of patients wanting to become more empowered and have more knowledge and they feel as though there's a bit of a glass wall, they're looking at, medicine and being like, oh, I wanna know what's going on and also I wanna be fixed. I wanna be helped. But they may maybe don't have the understanding, don't have the knowledge, or don't have that kind of relationship with their medical provider. Maybe that then encourages them to start looking elsewhere and then you hit all sorts of rhetoric about don't trust doctors, don't trust the medical system. In that narrative when that's what patients are coming across maybe on social media. This message of don't trust the medical system, how do you help patients deal with that? Do you think there's any truth behind that or do you think there's a bit of nuance to it? 

I understand it. I see it. There's tons of medical errors that happen. There's a lot of issues with the medical system and I think people that are involved in working in the medical system and outside both agree with it. I don't think there's any disagreement on either part. But I think there's a way to work together with the medical system to benefit the patients. And that's really essentially the role of the private patient advocate. Because as much as a patient doesn't like the healthcare system, if you're in a life or death situation, you need the health healthcare system, right? You can't do surgery at home. You don't have an ER in your house. You can still have your guard up and that's totally appropriate, be able to have that ability to utilize the healthcare system to your benefit. A lot of it too comes down to, alternative medicine and integrative medicine and all these factors where people are like, Hey, we don't wanna run to procedures and all these pills when we can do natural things and what I think is, a little bit new to many patients is that many providers are very open to integrating or trying alternative options first. And I think that's great. And a lot of times these more natural methods and management message methods are like, can be done either initially or in combination with, prescription medicines. It's not one or the other. It's definitely a collaborative approach. So the more open that patients are with their providers, I think the better outcome they will have. And in order to be open and you have to feel comfortable, right? So if you're able to like slowly build that trusting relationship, it'll be beneficial. And get you the quality of life that you want. 

That's really interesting to hear, particularly about the collaboration between, maybe more integrative practitioners and medical. Certainly how I've managed to come to manage my processes, bring them both together in harmony, 'cause ultimately, they're not necessarily contradicting one another. It's just different approaches towards the same goal and I think we forget that. I think whatever a doctor's, medical background or holistic background, ultimately, everyone has the same goal, right? Which is to, help a patient get better or have optimum health, and I think we forget that. We think they're pitted against one another. And I think actually sometimes we pit them against one another because, it seems to suit the, the narrative that we're consuming right now.

 From your experience, both as a medical doctor, when that was what you did full-time, and now with your private patient advocacy work, where do you pinpoint the main problem in the medical system, and what would you do to fix it if you could?

So I will say, there's so many problems. I think it all comes down to communication. Because there is so many moving parts, communication gets, gets misconstrued and I think the more fast-paced the environment and the more, people are involved, then there's more chance for errors with the communication. Electronic medical records, does help. But then again, if communication is improperly entered in there, then you're just submitting repeated incorrect communication. A lot of initiatives have been implemented in different healthcare systems and different practices to help improve communication. I used to work a lot with quality management and quality improvement. A lot of our efforts are really to, okay, how can we better, improve reports or sign off and things like that. There has been some steps in the right direction. I just think it's a continual process. Because we're constantly introducing new technology and new methods, the communication has a chance to get not properly relayed. Then also too, properly educating patients, educating their family members. I think that's something that's forgotten a lot. Especially if you're in the hospital, the patient's not really listening many times because they are in pain or they're not feeling good, or so, even, for instance, when you're getting discharged, a lot of times it's protocol that the nursing staff reviews all the medications with the patients before they go home. A lot of times the patient is tired, exhausted. Not listening, they just say they understand everything because they wanna leave, right? Because they wanna go home. So some initiatives have been where they try to have a family member present as well, or a loved one that can also take this information. They'll give 'em something in writing so they can look back on. And then there's like a contact number where if they have any questions they can call or say, Hey, I didn't remember that. Or something like that. Because at discharge or any kinda time, there's like a transition of care. That's one of the biggest areas, there are times where there's a high risk for medical errors to, to occur because of that big change off of information. 

In the UK it's all centralized 'cause we have state funded healthcare. So I can go to a hospital in the north, in Manchester, for example, and they will be able to like that, collect my records from my hospital in London. Whereas I know in the US it doesn't quite happen like that. Have heard instances of me, M1 patients having to literally fly to see a different, a different practitioner, but they can't get hold of their medical records and it sounds very stressful in those situations, would recommend patients have a private advocate with them if that's something that is accessible to them? Do you think it just makes the whole thing a lot easier? 

It does. For me, anytime any of our clients have an appointment, we make sure ahead of time that other records are received and they have everything they need. We often will fax the records ourselves beforehand or coordinate it to make sure that we have confirmation and everything. That kinda takes an added layer of stress off of the patient. But then also too, it gives time to the provider if they have that time to review records beforehand and prepare. They're coming in with a little bit of information. At times when we have these cases where patients have maybe been gaslighted or there's been improper information on their chart, we are able to send the information that's accurate and then say, Hey, there's this information, we're aware of it, we want you to know that we are aware of it. It's not necessarily accurate. So maybe they're going in with a little bit more information knowing, okay, maybe I shouldn't rely as much on these records. I'm gonna really rely more on the visit with the patient. 

I think for me, knowing that I would have someone else there who is gonna not miss the details, make sure the i's are dotted and the T's are crossed is such a reassurance. As I said to you when we began the episode, I hadn't really heard of private patient advocacy before I came across you, and it could just be so valuable for so many patients out there. I'm thinking about all the very common problems like, feeling gaslit, by a medical professional getting second opinions, not being sure which route to take, which one is best. I think there's like such scope in private patient advocacy and I really hope that we can have something like this in the UK, that someone starts it over here. I know you said you work with clients in Europe. For me to only just be learning about it now I'm baffled.

Yeah, to be honest, some states are very fluent in private patient advocacy and some are not. I have clients all throughout the US and international as well, but I live currently in Michigan. When I started, I was actually the first private patient advocate in Michigan. And so working in the healthcare system I kept thinking years prior wow, one day I wanna start this thing where I just work directly for the patients and just help them one-on-one. But I didn't know it was an actual thing until I started researching it years later and I'm like, wait, this actually already exists. I just didn't know about it, but I was like embarrassed. How do I not know about it? And I work in the healthcare system. Over the years it's become more known, but there's still many people that don't know what a private patient advocate is or how to best utilize them.

And we do, in the US, have these patient advocates that sometimes healthcare systems will now offer complimentary or like insurances. It's a little misconstruing, if that's the right word to use. They're a little bit different. So those typically are more like customer service representatives, so they'll help direct you, like within the system or you know what resource you can use in that hospital. But it's very different than a private patient advocate. We're completely non-biased because we don't work under the healthcare system or for a certain insurance company. So we really work directly for the patient. We have that medical background. We have that experience where we can help navigate all that.

Also what I do is review medical records to see okay what things in here maybe might be causing, maybe something's worded a certain way that might be causing that gaslighting issue. Or maybe there's there tests that are repeatedly done. They're not doing different testing or, what is the specialist that maybe you haven't seen yet and things like that. Medical records review is a huge thing that we usually start with because it gives us like a roadmap to like, where what, what could be some good next steps for you?

I'm really glad that it's not just me who didn't know about patient advocacy. Honestly, I can't wait to tell my medical professional contacts about this because maybe they don't know either. Maybe they've never had a private patient advocate sit in on a consultation with them.

 I dunno if this happens with the patients you work with, but I think in the UK it's something to do with the fact that our NHS is so overwhelmed and doctor to patient ratio is pretty terrible and patients often feel like if they haven't heard from the hospital in a little while or they might get given a yearly follow up rather than a six month follow up. There's this kind of fear that, oh my gosh, am I gonna slip through the net and am I gonna get forgotten about. From your experience, does that happen very often? And is that one of those medical errors unfortunately, that you mentioned at the beginning? Or is it maybe less common than we think? 

I think it does happen unfortunately. Because like I said, there's so many moving parts. If somehow your name gets missed off the list or they call and they didn't leave a message or relay that it wasn't scheduled, there's a lot of room for error. It's not intentional. All systems have the possibility for error and there's not always those double checks or triple checks and things are constantly moving. So even though a clinic could have a great system, an emergency comes and they have to accommodate, there's always, in medicine, there's always unknowns. It's hard to incorporate those a lot of times into these systems or processes because you don't know how many unknowns you're gonna have.

I do recommend, if you haven't heard, to maybe follow up and check in a professional or polite way. I don't recommend calling and screaming, but, because I don't think it's gonna give you the best outcome, but yeah, I think double checking if you need to, is definitely appropriate. The other thing I will say, and I know this happens a lot in in the US is, sometimes you'll get a appointment or referral. We do a lot of referrals here for like specialists and then you get a call or you call them and they'll tell you , oh, the wait is a year or something like that. And then the patient's like, I can't wait a year. A lot of times, it may very well be that the schedule is very booked and it is a year out, but a lot of times, because they don't know the severity or your symptoms, they just go like by, first come basis type of thing.

So what we often are able to do is to connect with the practice and just explain Hey, we have this situation, the patient has these symptoms. That timeframe is much. Too long for them. Is there any way we can have them evaluated to be seen or their case review to see if they can be seen sooner and things like that. And believe it or not, that's usually very successful. We were pretty receptive when we do that. And I think that's not common knowledge so I think it's important to note that.

Are most medical professionals very open to having someone like yourself sit in on a consultation or have you ever had any experiences of that being a little bit of treading on toes?

That's a great question 'cause we get that by a lot of our like clients. Initially they'll be like, is my doctor gonna be offended if I have a private patient advocate? That's usually how we get asked, and the answer is no. Could it happen? I guess, but I have never experienced that before. In my experience, they actually appreciate having us because it helps their make their job easier and the patient comes in more prepared. The meetings go better. If there's any kind of question, we are able to relate it or ask it like in a quick, straightforward manner. We make sure that they're, getting to their appointments. They're prepared for their appointments, they're following up with the recommendations from the appointments. They understand the information that they're given. We review the notes from the visit so we can make sure that there was no miscommunication and what the patient thinks was said or what the doctor wrote down and things like that. They actually, typically love us. It's kinda having an extra middle person to assist with kind of both ends.

There are professionals out there who have their own complex about, being questioned and that's their work, but it's so nice to know that's not the vast majority and that generally a medical professional is gonna want another, reliable, trustworthy, human being in that room to help just ease and smoothen out the process because their job is already difficult enough. I imagine.

It's how you ask the questions, if you have an actual direct question that can be answered. That's where we work with them to make sure that they're voicing the question in an appropriate way that can be answered. Because if you're going into an appointment and saying I have a list of 20 or 50 symptoms, can you fix them all in 20 minutes? Probably not. So you have to really work and be prepared. And I think on the receptive end, they'll really be appreciative that you took that time to decide what questions you wanna ask, how you're gonna ask them. And sometimes patients are not able to make those on their own because of whatever symptoms that they're having and we'll, so that's why we can help them.

And patients will sometimes get really nervous in appointments, so they'll say can you ask the questions? And we both have the list of questions and I will ask them or they'll say, if I forget anything, please ask everything else, or please chime in if you think there's something that was brought up. One thing that I tell my clients is in from the start is that we can be as involved as you want us to. So some patients really like to maintain that autonomy and just have us like as needed, like on the back burner, if there's something that they get stuck in, then they want our help. Some are very hands off where they're like, please kinda run the show and pull us in when you need us. And then there's obviously different variations of those in between. It's whatever your comfort level is. My goal is also to teach you how to better advocate for yourself as well. We want you to continue to be strong advocates of yourself.

Elena, I am so grateful for all the time that you've given over to this episode today. I have learnt honestly the most amazing array of information, things I didn't know before, like I've just been saying to you. For me, the idea that is someone out there dedicated to helping patients not just get the healthcare but manage the emotional process in between is so phenomenal. And it has restored my faith in the medical system because at least there is some amazing way of making it easier for both, for people on both ends. So I praise indeed for all the work that you do. I think it's phenomenal.

 If anyone listening back to this podcast, they wanna work with you or they wanna find out a little bit more about how private patient advocacy would help them, how do they get in touch with you? 

Sure. Our website is pathway pa.com. They can go to any of our social media , Instagram or Facebook or they can just give us a call. Our main number is 9 4 7 5 1 7 8 3 9 5. A lot of times, patients want to take a minute and actually talk to me directly and make sure that I'm the, fit for them or whatnot. And that's totally available for them. So if they give us a call and say, Hey, we'd like to have a, 15 minute talk to get to know her before we decide that we wanna move forward, that's definitely available to them as well. 

Amazing. I'm gonna put all of Elena's links in the description box below, wherever you're listening to your podcast. I'll just say one more time, thank you for your generosity of wisdom and I wish you all the very best with your work in the future professionally and also your personal life as well. I can't wait to hopefully have you back on at some point in the future if that's something that you'd like to do. 

Of course. I think everything that you're doing is amazing too. I'm very honored to be on.

As an MEN1 patient, I could definitely have done with working with someone like Elena. Not least when I began to embark down an alternative approach, and I was petrified to tell my medical team in case they judged me or they thought I was being reckless. Having someone like Elena there would've put me at ease, made me feel like I didn't need to be embarrassed, and also like I could trust her completely. If you are interested in private patient advocacy and working out whether it might be right for you, check the description box below wherever you're listening to this podcast. I will see you next week with a brand new guest.