- 5 months ago
Today on The Cameron Journal Podcast we are joined by Melissa Winger who is an author and patient advocate after navigating the healthcare system for her special needs child. We have been having an on-going conversation on this show about the healthcare system and this continues that conversation.
You can find her book here: https://www.whocaresbooks.com
You can find her book here: https://www.whocaresbooks.com
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NewsTranscript
00:00Thank you very much.
00:30Today on the Cameron Journal podcast, we are joined by Melissa Winger, who is, she's written a book called Who Cares? about all the ways in which the medical care system has failed her family and fails others with complex chronic diseases sort of thing.
00:45And this will be an interesting journey. We've talked a lot about healthcare over the last several episodes with Guy Morris and Dr. James Augsbury and others who've talked about the ins and outs of trying to get medical care in this country.
00:58And the subject is always near and dear to my heart because I have a chronic thing. I have asthma, and I can tell you how all the ways in which they fail, that sort of thing.
01:10And then also as a neurodivergent person, we aren't even thought of 90% of the time.
01:16And then also my longtime listeners to the show will know my ex-girlfriend had a series of chronic issues and watching her deal with chronic pain.
01:24And when we met in 2019, she had just gotten into that life and she had literally going to doctors was a part-time job.
01:32I actually tracked it. She spent 23 hours a week. That's a part-time job just coming and going from doctors.
01:38And we were blessed at that time that she didn't have to work.
01:41I was able to cover all of our bills and everything, which included a lot of being very careful with gas and shopping at Aldi, but we managed.
01:48And this is some of the struggles.
01:51You know, even in an early relationship, it's just so obviously this is just such a huge thing.
01:56And the medical system doesn't always work the way that we would want it to.
02:00So this has been a hot topic of conversation.
02:02I've told some of these stories before.
02:03So long-time listeners will hear a lot of the same old, same old from me, but we'll be hearing a whole new set of drama from Melissa, the author of Who Cares?
02:13So welcome to the Cameron Journal podcast.
02:15Thank you so much for having me.
02:17It's been an honor to be on your platform.
02:20Yes, thank you.
02:22Well, why don't we start right from the beginning?
02:23We were in doing our pre-production talk and you were right about to tell me all about your situation.
02:29So why don't we talk about yourself, your book, and what your family's been through and why you were inspired to write it?
02:35Yeah, of course.
02:36So my son, who's now 29 years old, was born with a rare chromosome disorder.
02:43So rare, there's no name for it.
02:45He's missing half of his fourth chromosome.
02:48And I had him at the age of 18.
02:50And what sort of the chromosome disorder is that he has problems with every single organ system.
02:58So nothing was formed properly.
03:00And even because of his rare diagnosis, he was not, we didn't have an outlook of this is the disorder and this is what is going to happen.
03:10Because they didn't know because it is that incredibly rare.
03:13So even as of three years ago, we were still getting diagnosis of what, of things he was born with.
03:20So what, and developmentally, he's more of like a toddler age.
03:25I always say kind of a toddler age, but with 29 years experience.
03:29And also with severe autism.
03:31So he is non, he's nonverbal.
03:33And I had to write this book because I wanted it from the patient perspective of the entire journey, not one hospitalization, not one illness, that there's a lot of books written from the patient perspective about that.
03:48But I wanted something from how I got prenatal care in the U.S. all the way through long-term care, because my son is now in a group home.
03:56And that is the entire experience.
03:58And so the book looks at his personal journey through different parts of the health system.
04:04And then I went into a lot of research and data on why the U.S. health care system is like that.
04:10Excellent.
04:10Excellent.
04:11That, you know, that, I mean, that's, that's a very, it was a very difficult, difficult thing.
04:16And you were so young.
04:17That had to have been overwhelming.
04:20Like, you know, I cannot imagine trying to manage, you know, oh, new baby.
04:25That's stressful enough.
04:27New baby with a lot of problems.
04:28And we don't have names for any of that, you know, sort of thing.
04:32That has got to be impossibly overwhelming.
04:35Yeah.
04:35It was somewhat of a, a little bit of a nightmare, but the nightmare didn't come from like my son being, having him and being concerned about him.
04:44It was the harsh conversations coming in from doctors.
04:48And the, the way a diagnosis was given was he has this incredibly rare chromosome disorder.
04:54He, this was four months, he's four months old and we're in a doctor's office.
04:59So he's not in a hospital on life support.
05:01He's in a doctor's office.
05:02And it was, I was told that his condition's not compatible with life and just don't be a hero and let him go.
05:10You're young.
05:11You can have more kids.
05:12And it was like, what just happened?
05:15You mean, it was just like a two sentence thing.
05:19It, it's awful.
05:20And we still get diagnoses that way.
05:22We still say never, never, never.
05:24Like your child will never hold his head up.
05:27Your child will never crawl, walk.
05:29He can do all of those things now.
05:32But I was told in the beginning, no, no, no.
05:34And we still do that to this day.
05:36We take away a lot of hope and not saying that, that, that everyone does this, but a lot of hope is taken away in our medical system.
05:45Yeah.
05:46And let's kind of, I mean, walk through that.
05:50What was, what was it like, especially as, you know, a young mother, those first several years kind of getting used to this.
05:58Um, what was like, what did it feel like to feel like they'd sort of already given up before you'd even gotten a chance to start?
06:06Yeah.
06:07That was the main issue is that I had him and I was sent home with him as a typical baby.
06:13Like they didn't even really give him a thorough examination.
06:16So I had no clue there was anything wrong with my son.
06:19As my Nana said, they would deliver babies in the parking garage if they would let them.
06:24Yeah.
06:24He couldn't eat.
06:25He had trouble swallowing.
06:27So they, they taught me how to stick this tiny tube down his throat and said, okay, if you can do that, go home.
06:33So I learned how to do that.
06:34And then they were like, he'll just figure things out.
06:37He he's just acting like a premature baby, even though he was full term.
06:41And I kept bringing him to the emergency rooms and because he would turn blue all the time, I couldn't get him to wake up.
06:48He would never cry.
06:49I go to the emergency room and they kept telling me, well, that I was, I didn't know how to feed him or I didn't know things because I was young.
06:57And I, I was like, whatever, if it's me, help me.
07:02Finally, they gave me a teen mom mentor lady.
07:05She came to my house.
07:07She took one look at my son and was like, he looks so sick.
07:10And I was like, I know I keep bringing him in.
07:12They kept telling me that it's that I'm not feeding him right.
07:15And that I'm not doing this.
07:16And she brought me and my son to the emergency room and basically laid down the law and said, somebody, please, there is something wrong.
07:26And it isn't the mother.
07:28And that's when he was diagnosed.
07:29His intestines were mal-rotated and his heart, they'd noticed the heart condition.
07:33But that was the first time, four months old, that we had a thorough exam.
07:37That had to have been a long four months, I think is what I'm hearing.
07:41I don't know how he lived.
07:42I don't know how he survived with me.
07:44And his dad is very involved, too.
07:46And his dad's 18.
07:48We didn't have a lot of family support.
07:50So dad worked like three jobs.
07:52And it was, no, I don't know how my child survived with everything in his body being wrong.
08:00I don't know.
08:01He's a survivor.
08:03Clearly.
08:04No, clearly.
08:04Clearly.
08:05Very, very, very, very much so.
08:07Very much so.
08:07So now let's move forward a little bit.
08:09So you finally get some help.
08:11Thank God for this advocate woman.
08:13Right.
08:13Because my pain show advocates are so important.
08:15You finally get some help.
08:16And then when they finally did get into motion, then kind of what happens and how did you start to navigate those early days?
08:27And then I think probably coming to realize, yikes, not probably getting the help I really need.
08:34Yeah.
08:34There was a lot of that.
08:35It was getting that first horrible diagnosis of he's not going to make it, which, and it was so bizarre because I had, I picked up my baby in a car seat.
08:44And I'm like, what now, what do we do now?
08:47And, um, but what was happening is that since we didn't know everything, my son would be diagnosed with something.
08:53He would have a surgical repair and he would recover.
08:57And he, my child recovered like quickly and then we would diagnose something else, diagnose something else.
09:03This was our entire life up until even like three years ago when he was diagnosed with something else.
09:09Um, but we had to learn quickly about not just being in a clinic or a hospital because you, my son was on equipment at some points.
09:19So now you got to navigate home care.
09:21Now you got to navigate how to get medical equipment and now you got to navigate the whole pharmaceutical industry.
09:29And so it's like this entire journey.
09:32And when things went wrong, not to blame my parents, my mother always told me the doctor's always right.
09:41You never, you would never question the medical providers.
09:45Like you have a barely a high school education, who are you to, you know, criticize what they're doing or what they say.
09:52So I had to get over that in such many years to get over that, but it was the mistakes that were happening that would cause my son extreme pain that like missing pain medication at right after surgery.
10:08Um, it was medical, like he had a drainage tube that was left in his kidney after surgery.
10:15And had required another, a very extensive surgery to remove that part that was left.
10:20And, and I thought I was losing my mind.
10:22I was like, do we have the worst luck ever?
10:25And then I started looking at the fact that this happens everywhere.
10:28And not only back in 1996 and the year he was born, but it's still happening now.
10:34He just had a, um, one of a world renowned hospital last year, major medical mistake during a procedure that left massive internal bleeding.
10:43So it's still happening and it's not the place.
10:48It's not the person.
10:49It's the entire system.
10:52Yeah, it's, um, it's a difficult, um, it's a difficult, uh, it's a, it's a very difficult thing.
11:00I, I, I've recently been educated on the other side of this.
11:05Um, I'm affiliated with something other publishing where I'm director of publications and anthologies.
11:09And in March, we released, um, a book from Dr. James Augsbury on a medical malpractice case.
11:15He went through as a doctor in the late eighties, early nineties.
11:18Um, and it was kind of one of those, and a lot of the, um, a lot of the, uh, it's called about not losing.
11:26I actually want to retitle it to standard of care because that, that figures quite widely in, in, in the case.
11:33And unfortunately it was kind of, it was a comedy of errors in terms of this woman went into how she was having sinus issues.
11:41They were scraping the inside of her sinuses.
11:44They pierced the sinus and the brain barrier and the brain fluid came out.
11:50They, she, they came to Denver.
11:51They were in Wyoming.
11:51They came, went to Denver to get this fixed.
11:55Dr. Dr. Augsbury tries to unsuccessfully fix it twice.
11:59And unfortunately it, it leads to, um, to severe brain damage.
12:04And she lived the rest of her, her life at home and family care, basically a vegetable.
12:08And I believe she died in 2003.
12:10Um, and it, it's a very, it's a very difficult thing, you know, the case all turned on was everything that could be done, done correctly, yes or no.
12:24And then what's the dollar amount, you know, based upon that sort of thing, they eventually settled because they gotten money elsewhere for the rest of her care for her life and all this sort of thing.
12:32Um, but having looked at it from, from kind of that, that perspective and the kind of, um, you know, fire doctors come under, this is a very interesting conversation.
12:43Um, because there, there's, there's definitely, you know, there's sometimes operations fail and don't work out the way they're supposed to.
12:51Every operation has a certain failure rate.
12:53It's well documented.
12:54But then when you start leaving sponges in people, you hear those stories, you know, or in your case, a tube gets left behind.
13:01You're kind of like, well, things have gone wrong here.
13:05Like, you know, like, you know, um, and that, and that makes things quite, um, quite, quite difficult as well.
13:16And also just to navigate and, and, and when you're the, I mean, when we talk about, you know, medical errors and this is a very small percentage, it's like, okay, that's good.
13:25But when it's, you're the one with the error, you're failing, for you, it's 100%.
13:28Like that's, you know, it's a huge problem because, you know, and then you have to go and have another painful surgery to remove the thing and all this sort of thing.
13:37And so it's, um, yeah, no, this is something people would be very interested in, um, emotionally and supportive wise for you, how are you still here?
13:48I think it's a realization that happened a lot later, a lot later, like teenager, um, cause you're in survival mode, living off adrenaline for so many years that I, I had to get over the anger because I was angry that this happened to my son.
14:08How could somebody be brought into, whether it was a religious thing, I don't even know what it was, but it was, I was angry.
14:14I was like, how, how do you bring a little child into this world, a baby, and you make them suffer and go through all this pain.
14:21And, um, so I was angry, like there was, why him, why us?
14:27And, but then it turned into, uh, why not us?
14:31You know, it was, uh, this is our chance to make this better, take our experiences and make sure it doesn't happen to the people coming up behind us.
14:41And make sure it doesn't, things don't happen to him again.
14:45And that was interesting when you were talking about, so like going back to like the medical era, I would automatically just go, why didn't you sue?
14:53Why do you sue somebody when this stuff happens?
14:55And I'm like, for what purpose?
14:58Like, I'm, I'm, we got to come back here next week.
15:01We're coming back next week for another surgery.
15:03Like, and it's like, then I started realizing there are no outlets for patients.
15:09It's either you sue or you file a complaint, which doesn't really go anywhere.
15:13And that's it.
15:14What else can you do?
15:15Um, and it's like, I took a different stand on saying, I need to figure out who's in charge of this process here at the hospital, because I want to work with you to make sure it doesn't happen again.
15:27And that has somewhat worked for me.
15:31I've been able to advocate and be a part of a lot of different boards and quality projects in many different settings.
15:37And that has helped, but it's this, we have to get away from us versus them, more of a partnership.
15:44Because as long as I've worked in the medical field now, and I'm like, the providers are just as burnt out and frustrated and angry as the patients at times, right?
15:55They didn't get into this field to do a bunch of paperwork.
15:59Like the majority of their day is paperwork and, and paperwork.
16:03Yeah.
16:03Maybe it's necessary.
16:04I'm always questioning.
16:06Why is it necessary?
16:07And it's, it's like, no, they're just as frustrated as the patient.
16:11Why aren't we joining together?
16:14For change, you know?
16:16Well, it's funny.
16:18That's kind of one of the, one of the lessons of that malpractice book that we just put out.
16:26And especially given the fact that the, the subject in, in the situation, Dr.
16:32Augsbury, he did not, he was a neurosurgeon and he did not go back to neurosurgery after that trial.
16:38He went to work for an insurance company approving claims.
16:41Um, and, and that he has, we've done some follow-up blog posts about his time there and what's wrong with insurance companies and all this stuff.
16:50Yeah.
16:50And we actually, he actually did a response.
16:52I had a guy now named Greg Vigdor.
16:53We were talking about insurance and he actually wrote a really great article.
16:56That one.
16:56Yes.
16:57In response to that.
16:58Yeah.
16:58That's Dr.
16:59Augs.
16:59Yeah.
16:59We did it to promote his book and everything.
17:01This book I saw.
17:01Yep.
17:02Yes.
17:02Yeah.
17:02It's an interesting kind of back and forth on, um, back and forth on, on that whole situation.
17:08And so, yeah, so it was, it was, it was, I've learned and all this has happened in like the last year or so.
17:14And I've just, I've, I've had, I have had my own positive and negative experiences.
17:19I had an allergist asthma doctor fire me once because I was at home dying and couldn't get his overnight nurse to give me a call back.
17:28And when I eventually went to the hospital, again, I'm actively dying.
17:32I complained and it was in a modest sized town and he was mad at me for complaining because the hospital called him to complain about him not taking care of his patients.
17:41So he's fired me as a patient.
17:42That's how we solved that problem.
17:44That's neat.
17:45That's just ridiculous.
17:47You know?
17:47Yeah.
17:47And it was so funny because I was really good.
17:49I'd never happened to me before.
17:51And I'd, you know, cause I was always, yeah.
17:53And well, I was always, you know, you know, raised to be the good little patient sort of thing.
17:58So I'm always going along to get along sort of thing.
18:02And after that, that kind of quickly came to an end for me.
18:06You know, now I show up with paperwork prepared.
18:10I Google, I'm worse than a crunchy mom.
18:12I Google everything.
18:14Like, like, like, you know, sort of, I mean, Medicare, all this time that you're like, I, and people are amazing.
18:19And some, I, I love doctor's offices and I have moved around the country a lot.
18:22So I've had to establish care at different places, coast to coast.
18:25And I only will stay at offices where they embrace the fact that I come armed with my iPad with all my info ready to go.
18:32Like every supplement, every pill, there's just like every, everything.
18:36I come very prepared knowing what's going on.
18:39Yes, this, not all this sort of thing.
18:41And if they embrace that, then I stay.
18:43If they're threatened by that, I find someone else.
18:46Flat out.
18:47Like, I don't even, at 37 years old, I don't play with this anymore.
18:50You know, sort of thing.
18:50Like, um, it is a very difficult, it is a very, very difficult, very difficult thing.
18:56So.
18:56And that's it.
18:57You don't have outlets.
18:58Yeah.
18:58Like, you.
18:59No.
18:59You sue or you file a complaint.
19:01It doesn't go anywhere.
19:01It's like, because, you know, the healthcare industry, they're not short of patients.
19:05No.
19:05Like, they don't need your, they don't need your, like, they need your business somewhat.
19:09But.
19:09Right.
19:10There's plenty.
19:11They got business.
19:12It's not like they're trying to sell you anything.
19:14No.
19:14Yes.
19:14I mean, if you, if you go, there's 10 people waiting outside in the parking lot, you know.
19:18Yeah.
19:18Yes.
19:19We're not going to bend over backwards to make sure that you're happy.
19:23We got more people coming.
19:24Yes.
19:25And that also, I mean, and I think that, I mean, I think is part of the, kind of in a
19:30weird way, kind of part of the, part of the problem.
19:32There's no, there's no way to make, to make these systems any, any better sort of thing.
19:38Because I think we are confused as to who the customer is in healthcare.
19:43Yeah.
19:44You would assume it's the patient.
19:45It isn't.
19:46No.
19:47It's insurance companies more, more so likely because you have to make them happy or you
19:51don't get paid.
19:52Right.
19:53Because unless you're private pay all the time, there's no reason to make like you, the patient
19:58happy because you're not paying for the product.
20:02Right.
20:02So to speak in their sense, they're having to, so it's like, who's the customer and who do
20:07they need to.
20:09Focus their attention on.
20:10That's what I always find interesting.
20:12Yes.
20:13And I think that's oftentimes health insurance.
20:15And that's one of the things I'll put like right back door.
20:17Is it often, is oftentimes a health insurance company and what the health insurance companies
20:21prioritize gets diagnosed more.
20:23I mean, it gets treated more, it gets resources devoted to it, all this type of thing.
20:27And it's, it's funny because one of the, you know, everyone's always trying, you know,
20:33how do we, you know, save on healthcare costs and lower prices and, and all, all this,
20:37all this sort of thing.
20:39And I said, honest, I said, honestly, I said, one of the advantages of making healthcare,
20:46especially doctors, also, you know, doctors, especially salary jobs is you end up with less
20:54catering to insurance companies.
20:55And I, Dr. Augsbury was helpful again, because he said, he's like, I made less money in my
21:02career because he did workman's comp claims for a long time.
21:05And they're very sensitive about what gets diagnosed, what they get paid for all because
21:09it goes to the state and they're cheap.
21:11So, sorry.
21:13Yes.
21:13Right.
21:14And so, and so he's like, he's like, I made less money because I wouldn't always do an
21:19operation.
21:20He's like a lot of surgeons.
21:21That's what they, what do you come in?
21:23They evaluate you.
21:24Yes.
21:25Operate.
21:25Yeah.
21:25And it goes on, goes on like that.
21:27And he said, and it's especially true if the insurance companies kind of pay for the
21:31operation without a lot of question, these doctors end up doing it.
21:34And he's kind of like, yeah.
21:34And he's like, and he's like, and that's why he's like, honestly, it's like, I never
21:37made as much money as I could have because I did what was appropriate to the patient
21:42in their situation, not what would necessarily fill the coffers of my practice sort of thing.
21:48And I'm kind of like, I think, I think if you put it to doctors, yes.
21:51And I think if you put it to doctors, we'll give you a great salary and no more billing,
21:56blah, blah, blah.
21:56We'll come to you when we need you to do the medical things or, you know, I think, I think
22:01a lot would, I mean, obviously people like plastic surgeons who are doing seven
22:04figures a year wouldn't be too happy, but your run-of-the-mill primary care family MD,
22:09I think would be a lot happier with the system where they get paid no matter what.
22:15And then they can just offer great exemplary care.
22:17Yeah.
22:17You know, and that's.
22:18They don't have to see someone every 15 minutes, which is, I don't know, that's impossible.
22:22Yeah.
22:22No, I always, I was telling someone, I said, as someone who's paid for private doctors and
22:31has also been on Medicaid at different points and stages of my life, I said, the care that
22:36you get from a private clinic is so night and day different from anyone that accepts Medicaid.
22:45It's, it's a joke.
22:46I mean, it's, it's just a joke, you know, sort of thing.
22:49Um, I, I, I, I did when I, a couple of years ago, I switched onto my own insurance and got
22:55with a private doctor because my insurance covers some things, but not much.
22:59And so I got to the private clinic and everything.
23:01And I, I just absolutely laughed.
23:02And I said, I sat with my doctor for 45 minutes the other day talking about stuff.
23:06And there was absolutely no problem with that sort of thing.
23:08I said, it's such a night and day difference in care.
23:12People would be, it's embarrassing.
23:13Really.
23:13It's embarrassing.
23:14Um, and that is just so, so very, so very, very, very different.
23:20So.
23:21I have a huge, I have a huge bias problem with Medicaid.
23:25I'll just put that out there.
23:27I, my son is on Medicaid.
23:30Yeah.
23:30My son is on it.
23:31And, and the reimbursement is so low that he can't get care anywhere because you get
23:38the reimbursement is so low yet.
23:40We're asking them to take on caring for one of, you know, sometimes the most complex of
23:45patients.
23:46Right.
23:46They get paid nothing.
23:47So what do they do?
23:48They don't even accept them as patients.
23:50It does such a disservice.
23:52Yeah.
23:52No, I've been on Medicaid in two different States and trying to, I was very lucky.
23:57In Colorado, my family doctor who'd been seeing me since I was five was part of a big clinic
24:02corporation.
24:03Didn't care.
24:04When I moved to Washington in the Seattle area, um, I thought I had a job job fill through.
24:10So I was gigging and got on the state, I'll do everything.
24:13And yeah, finding, I mean, even in a big city, you know, finding a doctor who will take you
24:19all this, I mean, it was very difficult.
24:20I ended up at kind of a, a catch all clinic.
24:23It was basically a medical clinic that just did, that's all they did was Medicare, Medicaid
24:27people sort of thing.
24:28Um, and they had a couple of doctors, a lot of physicians assistants, a lot of nurse practitioners,
24:32which is great.
24:33I love a nurse practitioner.
24:34Um, and yes.
24:36And, and all this sort of thing.
24:38And, um, and it was like the way they treated you was tawdry.
24:43Um, I got misgendered by the nurse one time, like, and I had a beard too.
24:49And I literally come in and the doc, the nurse practitioner opens the door.
24:53She's kind of like, she did literally two seconds.
24:56You're not a woman.
24:58And I'm kind of like, no, you're welcome to check though.
25:01Like, I like, nope, I come fully equipped.
25:04You know, sort of thing.
25:05And she's like, that's the third time this has happened this morning.
25:07Closes the door, leaves.
25:09And I'm, I don't, I don't, I was like, I said, here's the sad, here's the sad thing.
25:14I'm not trans.
25:16That's not my ministry.
25:18I'm in my lane over here.
25:20If I were, and I was already having a lot of nervousness about going to a medical doctor,
25:24that would have been a horrifically traumatizing event.
25:27I didn't care.
25:29Cause I know me like, you know, sort of thing.
25:33Um, but it's like, it's like, that would have been incredibly traumatic.
25:36I said, and the fact that this had happened three times that day, why is that person still
25:40working in this office?
25:41Like, even if it is the low cost Medicare, Medicaid catch all for the rest of the doors clinic,
25:47like, like, why is this person still working?
25:49But the, but the, but here's the problem is the clinic church will come and say, I'm so
25:53understaffed.
25:55I have to keep them.
25:57Cause I can't find somebody.
25:59So.
26:00Wait, it's everywhere.
26:00Yep.
26:01Right.
26:01We'll yell at them again, but they'll be here tomorrow morning at seven 30.
26:04Um, you know, sort of thing, you know, sort of thing.
26:07I mean, yeah, it's just a terrible, a terrible, a terrible situation.
26:11So, so how did you, you mentioned you were on a lot, we'll get back to you now.
26:15Sorry about that.
26:16I love, I love the conversation.
26:19Yeah.
26:19So you mentioned you got on a lot of different boards and was working collaboratively with
26:22your medical providers and everything and whatnot.
26:26Um, when did you start to feel more confident and get good and kind of figure out how the
26:32system started to work?
26:34Um, when things started to happen, when I would make a recommendation or a change and
26:40that change was actually done was like, that got me started.
26:45It was like, Oh, Oh, Oh, I can, I have a, I have a stay.
26:49I have a power.
26:50Um, and this literally is something so small.
26:53It was the, um, the fact that you would redo a waiting room in a clinic without any input
27:02from a patient and you have to think people in the clinic, they don't sit in their waiting
27:05rooms.
27:06They barely even, they usually have a back door.
27:08They don't even walk through it.
27:10And to bring in a patient that could say like, yeah, you know, I come in here with my son and,
27:17you know, or people that come in with their wheelchairs.
27:20It's like, this setup is ridiculous.
27:21And we would make suggestions.
27:23And then you actually like redesign at a clinic and you go and you saw your, your suggestions.
27:28And that's like, Oh my gosh, like I, it actually mattered what I said.
27:33And that kind of got the ball rolling and, and I started applying for different, um, boards
27:38and councils and yeah, just worked my way through and sharing our story.
27:45No, absolutely.
27:47And that's, no, I mean, that's amazingly wonderful and powerful advocacy.
27:51And I mean, that's a lot to take on while also you still have a mom of a special needs
27:56child, you know, who's, you know, requiring way more care at higher ages than you were
28:03ever thinking was going to be your thing.
28:05And so that's, I mean, that's, I mean, that's a lot to take on.
28:09So have you slept in 29 years?
28:12No, I haven't.
28:13When was the last time you had a good night's sleep?
28:17Yeah.
28:17It's, it's much better now, even though I am, I have, I'm getting better.
28:21I'm still worried, but he's 23 years old and he went to a group home and of course being
28:27mom, I moved, I moved and now I live just a mile away from the group home because he's
28:34not getting far from me and I can go check out on him constantly.
28:37But I, that was a big decision that, um, and that led to kind of that other half of my book
28:44talking about long-term care and talking about vulnerable adults and people with disabilities.
28:51And how horrific the treatment is, um, in long-term care.
28:56And then, because I never just leave it at that, like, oh, it's just horrible.
29:01Me being naive when he was little, I was like, well, if he ever needed long-term care, it'll
29:05be fixed by the time he needs it.
29:07Of course, no, it's not going to happen.
29:09But I look at, I was like, why is there long-term care?
29:13Like, so, so why is there so much abuse and, um, neglect and maltreatment in these systems?
29:20And if you look at the whole system, it's like, yeah, you've got to go back Medicare,
29:24Medicaid, reimbursements are incredibly low.
29:27So, so in order to get good staff, you're hiring them at sometimes below minimum wage.
29:33So, in fact, you're asking people that don't have any training, because that's sometimes,
29:40a lot of times not required.
29:41They're getting paid less than working in fast food, and they're having to take care
29:45of very complex patients and do things that most people wouldn't do at minimum wage.
29:51Like, I'm not going to handle some, you know, behavior issues that you're not even skilled
29:56or trained to handle.
29:58You're handling a lot of, you know, um, let's just say, you know, personal hygiene issues.
30:03Like, and so how, how do they get these staff in?
30:08And then you have staff, because I've come across many, many, many in my day that are so
30:13gifted and just love it.
30:15And they were meant to do this type of work and they love it, but they can't do it.
30:19They have to work two to three jobs to make a living.
30:21It's sad.
30:22It is really sad, but goes back to how are we reimbursing this type of care?
30:28Um, not very well.
30:29Yeah.
30:30Yes.
30:30And that, and even just, you know, additional funding stuff.
30:33It's always amazing when you find a place with somewhat decently funded care with someone
30:39who's there for a long time, all this type of thing.
30:42My half brother is in, he isn't nonverbal autistic.
30:46He's 10 years older than I am.
30:47And he lives in a lovely group.
30:49Um, instantly his mother, my father's second wife does live like literally on the same road.
30:53Um, and my father lives across town.
30:55So, um, you know, basically in the bushes of the group.
31:00Yes.
31:01Yeah.
31:01They didn't, they didn't get too far.
31:03Um, and everything.
31:04And it's amazing.
31:05He's had the same, the same people go, the same people every day for a long time.
31:09But the state of Alabama also like specifically funds that sort of thing additionally.
31:14So that you end up with, and it's always, and the problem is it's never universal.
31:19It's, it's pockets of, you got lucky because you found a system that wasn't falling apart,
31:24you know, sort of thing.
31:26Um, and, and it's, it's something where I don't think, especially people who've never had to
31:31deal with these systems understand how difficult it can be.
31:35Most people don't have the money to care for people like that long-term, you know?
31:40And so it really, you know, it's really dependent on, on us, all of us to make it, to make it
31:46happen.
31:47And so it's a very difficult, um, it's a very difficult thing.
31:52We don't talk about, there's not a lot of advocacy in those, even what, what happened
31:57during COVID and all those people that, that died and, and everything that were in long-term
32:02cares.
32:02It's like, there's, we still don't talk about it.
32:05And it's like, I'm trying to figure out what, is it a psychological thing where I don't want
32:10to face the fact that I myself might be in a nursing home someday?
32:13Yeah.
32:14Or like, what is it that we don't talk about?
32:16Cause it's sad.
32:18It is a group of, of people that are, that are in those situations.
32:22They don't, they're, they don't have a voice.
32:24And so it's so easy for them to get taken advantage of.
32:28It just makes me like sick, like, but it's like not enough people.
32:32Cause you know, like how advocates work is if it affects you, then you tend to be an advocate.
32:38If it doesn't affect you right now, it's like, we'll let someone else figure that problem
32:43out.
32:43And then it's till the day that maybe you end up in a long-term care facility that you're
32:47like, well, I wish I would have done something.
32:50Yes.
32:51Yeah.
32:51And it is definitely.
32:53And I think the medical system as a whole, I get really frustrated with, you know, people
32:59who have been lucky enough to not need very much medical care in their lives.
33:03Who act like, you know, Oh, it's all very simple.
33:06And there's so much ways from blah, blah, blah.
33:08And I said, I mean, I'm sure if we go look around long enough, we sure can find some because
33:13it's a human institution.
33:14We'll find some somewhere.
33:16I said, but I mean, honestly, it's like these systems barely hold together and one strong
33:22breeze, they'll fall apart.
33:23And we got a real picture of that during COVID.
33:25And that was more than a strong breeze.
33:27And it is, you know, by the grace of God or whatever you want to call it, that the entire
33:33medical system didn't entirely collapse.
33:35And a lot of people left.
33:36A lot of people, people died.
33:39Providers, not just patients, died.
33:41You know, I mean, this, these things come, the cost for these things is steep.
33:45Um, and it's, it's really hard to explain, you know, yeah, trying to get care for something
33:52when in many cases that you have doctors don't even believe your disease exists, ask anyone
33:58with Lyme disease, fibromyalgia, all this sort of thing, you know, um, those of us who still
34:04are dealing with long COVID below these many years later, those of you who don't, my primary
34:08care doctor right now does not believe in long COVID, um, which has caused me to reevaluate
34:12if I want to continue with that clinic or not, um, but, um, we're having, we're having
34:17to think, you think about that, um, right now.
34:19Um, so that's what's also horrible about this situation is that you are told, and I'm going
34:26to, I also tell people, you got to advocate, you got to speak up.
34:29We're asking people to advocate and speak up when they're sick.
34:32Like there's the worst time of their life.
34:34And now we're like, you better get in there and fight.
34:38Why?
34:39Right.
34:39Yeah.
34:39No, I mean, that's the problem I had with my allergies.
34:41It's kind of like, I don't want to fight with your night nurse.
34:43I'm literally dying.
34:45Like I could be dead before the night is through, you know, sort of thing, you know, now I don't
34:50really have time to argue with you right now, you know, sort of thing.
34:53Well, it's like so bad that we even use those, like we use war terms, like we're boots on the
34:58ground.
34:59Like when we talk about nursing and like the ERs or, you know, you're going into the battles
35:03and we're like, what?
35:05Yeah.
35:05Why?
35:06You know, we even use those terms, like it's going to be awful.
35:09No, and what's amazing is when you go to other countries and say their systems, they
35:14don't work that way.
35:16No.
35:16You know, at all.
35:17No.
35:18And I remember I minorly fell down in the Louvre in Paris and they were absolutely dumbfounded
35:25that I felt no need to go to a hospital or seek medical attention.
35:28I'm like, I barely fell.
35:30Like I didn't even really fall, like sort of thing.
35:33And then it was like, oh, I'm like, no, no, no, no, no, no.
35:37I'm just going to go continue on.
35:38I don't need to interact with your medical system.
35:40So I think, you know, I mean, most people it's, yeah, it's immediately on the stretcher,
35:44off the hospital, you get all sort of thing.
35:46And people, you know, are always amazed that we don't rush into the hospital at every bump
35:49and bruise and sort of things.
35:50Like we don't want to deal with these people any more than we absolutely have to.
35:54They don't, they don't want to deal with us either, really.
35:57No, no.
35:58Yeah.
35:59So we just kind of, you know, we, yeah, we don't bother unless it's really important.
36:04And so, yes, it's a, it's a, it's a, navigating anything medical is so hard.
36:09And so you're amazing for having done it for this many years and survived and managed to
36:13be an agent of change along, along the way.
36:17I wish for a world where you never had to write this book.
36:20Sorry.
36:21I wish for a world where you never had to write this book.
36:23We never have to have this conversation, like where you got all the help you needed.
36:27You never had to write a book.
36:29I didn't have to interview you about it.
36:31It's like, you know.
36:32Everything's fine.
36:33Yeah.
36:33Nothing to talk about here.
36:35Exactly.
36:35Because the system actually worked for you and your family, you know, and it's always a
36:40couple, you know, the times people come out, we have like, I wish we created a system
36:44where you never had to go through this and never had to, and we ever talk about it, but it,
36:48yes, it is.
36:49But I think also one of the things I would like to see more of is patient advocates in
36:53hospitals, you know, whose job it is to go around and make sure things are, yeah.
36:58The reason why I say that is because like there are, I've come across patient advocates
37:02and I've wanted to like be one as a job.
37:05Right.
37:05And then, but some places do it a little different, which I'm like, no, no, we don't do it.
37:09Like, don't do it like that.
37:10Don't put it under your risk management department.
37:13Oh, no.
37:13It's like, no, no, no, no.
37:17That means you're just, whatever you do to make, just make the patient happy, just whatever.
37:21So they just shut up and don't sue us.
37:24I'm like, no, no, put it there.
37:27Put it, put it somewhere else.
37:27That's not patient advocacy.
37:29That's lawsuit prevention.
37:31That's what it is.
37:32But then they thought a patient representative, like, are you sure?
37:35Yeah.
37:36Like, no, you're in the lawsuit avoidance department.
37:39Let's be honest about your job.
37:40And they don't really hide it.
37:42They're like, here's somebody from risk.
37:45Who's the patient representative?
37:47Cool.
37:48That's awesome.
37:49Yes.
37:49No, no, no.
37:50That's, no, that makes a lot of, a lot of, a lot of sense.
37:55Yeah.
37:55But I mean, honestly, typical of the American medical system.
37:59Like, we should have more patient advocacy.
38:00Yes, we should help.
38:01We should prevent them from suing us.
38:03That would be higher 10 people.
38:05If we can get people, just shut up.
38:08They're cheaper to pay than the lawyers.
38:10Yeah.
38:11That, yes.
38:12No, it's a quite sad.
38:13Yes, it's a quite sad situation.
38:15We're almost at time.
38:16And I have a live show in 20 minutes.
38:19So the last question.
38:20Yeah.
38:20The last question I want to ask you before we do plugs is, if there was one overarching message
38:28or idea from your book, this story, this crazy life that you've lived, what would you tell
38:34people?
38:36To, to speak up to, and not necessarily when you're going through something, like, like,
38:42get through it, but then afterwards, like, advocate for the other people, sadly, coming up behind
38:51you or for yourself if there's another event.
38:54Um, but just to keep the conversation going and, and to learn about the system and say, how can we make
39:02this better and find people to partner with, not just patients, like partner with the clinics,
39:07with the hospitals, um, and say something because things keep happening because we don't necessarily
39:14have a strong enough voice in change.
39:18So we need more people speak up, call to action, all of those wonderful things.
39:24Yes, absolutely.
39:25So why don't you let us know where we can buy your book and where we can keep up with you online?
39:29So if you go out to my website, www.whocaresbooks, books with an S.com, then there's going to be
39:39links to where you can get the book.
39:41There's also a tip sheet on how to, um, like when going into your doctor's office, all the
39:46kind of things you should do with documentation.
39:48Um, and there's also then my social media links as well on the website.
39:52Wonderful.
39:53Excellent.
39:54Oh, and one last thing is that my book is on Amazon, but there's going to be an audible
39:58version coming about the end of May.
40:01So if you're an audible lover, wait for that.
40:03Wait for that.
40:04Yes.
40:04Excellent.
40:04Well, thank you so much for coming on the Cameron Journal podcast.
40:20That's all for this episode of the Cameron Journal podcast.
40:23Thank you so much for listening.
40:25Visit us online at CameronJournal.com.
40:29We're on Facebook, Twitter, and Instagram.
40:32And I love to talk to my followers and listeners.
40:34So please feel free to get us on social media at Cameron Cowan on Twitter.
40:40And we'll see you next time on the Cameron Journal podcast.
40:42I'll see you next time on the Cameron Journal podcast.
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