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Patient advocate Timothy Thomas discusses his article “The Cap’n Crunch philosophy of medicine.” Timothy shares his personal experiences with gaps in primary care, from learning of his diabetes diagnosis at a Walmart pharmacy instead of through his clinic, to promised tests never being ordered, to medication changes delivered without clear communication. He uses the metaphor of Cap’n Crunch, a title without true rank, to highlight how many clinics assign responsibility by availability rather than expertise, leaving patients vulnerable to rushed care and dangerous oversights. Timothy calls for greater regulation, stronger accountability, and clear communication standards to ensure patients receive safe, reliable care, especially in communities where clinics are often the only access point. Listeners will gain insight into the risks of understaffed systems, the urgent need for higher standards, and the role of advocacy in making health care more accountable.

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Transcript

Kevin Pho: Hi. Welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Timothy Thomas. He’s a patient advocate. Today’s Kevin MD article is “The Captain Crunch philosophy of medicine.” Timothy, welcome to the show.

Timothy Thomas: Thank you.

Kevin Pho: Your article is titled “The Captain Crunch philosophy of medicine.” You tell us a story from the perspective of your health care experience as a patient. For those who didn’t get a chance to read your article, tell us what your story is about.

Timothy Thomas: The main thing is that I started seeing a new family physician at a medical group, and everything’s gone wrong. I was misled because I was told they had a psychiatric unit that could help me, but it turns out they don’t take my insurance.

Several times I’ve had medication errors and issues. I found out that I was diabetic at a Walmart pharmacy counter when they started giving me supplies. I thought, “I don’t know what any of this is. What’s going on here?” Then they said, “Well, your doctor explained this and this to you.” I replied, “No, nobody explained anything.”

I’ve also had issues where they double-prescribed Lasix because there was one attached to my blood pressure medicine, and then that wasn’t working. I ended up getting severe leg cramps. The biggest problem with me personally is that I’m allergic to 99 percent of what you prescribe.

It feels like it’s an immediate give-up after that. They told me at first, “We’re going to take you off the blood pressure one and just put you on the other one.” But then they double-prescribed it without even telling me what was going on.

There have been so many miscommunications, so much where it feels like there’s no oversight. I was told to come in for a blood test to check my potassium levels. I got there, and it wasn’t even scheduled; it was five days later. It’s not like it was still in the system waiting there.

With anything that I’m told, it seems there’s no oversight. When I first went there, she said that she heard a heart murmur and was going to send me for an EKG. Since then, I’ve never gotten the EKG, and she’s never mentioned it again. I don’t even know if that was in my chart at all, because that seems like something that would stand out to a doctor. A doctor might think, “Hey, I heard a heart murmur the first time. I should keep checking on that.”

Kevin Pho: Give us some context in terms of how long you were seeing this primary care group.

Timothy Thomas: It’s been about three months now.

Kevin Pho: And where were you getting primary care before visiting this particular group in the last year?

Timothy Thomas: This is my third group because I started out with a decent enough doctor through family care at the hospital, but they didn’t offer the psychiatric help I needed. I called the first new one and they said, “Yes, we do offer this.” So I went there, and immediately it was, “We refer everybody to this guy, but he doesn’t take your insurance.” Now I’m stuck there.

My mom’s been seeing this place that I’ve been going to now, and she loves them. She also fits into the cookie-cutter model where every medicine you throw at her works.

For instance, lately I was on GLP-1 injections for about two months. I had every severe warning on the list except for death. I couldn’t stand up without doubling over in pain. I was regurgitating food five days after eating it, still whole and very clearly identifiable. My body is not right. I feel like they often try to go with the cookie-cutter approach, and then when that doesn’t work, they have no clue where to go.

Her last advice was… well, they finally did put me on a separate Lasix, and that honestly hasn’t helped much for my feet swelling. She looks at me and she said one time, “Well, what do you want?” I think, “You’re the doctor. What happens if I’m not responding to this? What’s next?”

Maybe there is nowhere else to go after two steps, but I feel like there should be something there. I feel like there’s no… you’re a doctor; you’ve seen a lot. Your next patient, every patient before with similar issues, factors in. I feel like they have no experience. They were just put into a role because they met the minimum qualifications.

Kevin Pho: You make that analogy with the “Captain Crunch philosophy of medicine.” Explain that metaphor for those who can’t make that connection.

Timothy Thomas: It started out as a joke. Years ago, the cereal company had put out Cap’n Crunch. Somebody had sent a message saying he doesn’t have the right bars and is not a captain. The company replied that according to Naval tradition, whoever is the highest-ranking officer in charge of a ship is called the captain; it’s their honorary title while they are in command and aboard their vessel.

The medical group that I’m going to doesn’t have a single doctor. They’re all nurse practitioners. But when you call, they refer to themselves as doctors. Their staff refers to them as doctors. You call to book an appointment with a doctor, but there are no doctors. It feels like the exact same thing, where it’s somebody who was granted the title.

With everything that I’ve been through lately, I feel like there’s no oversight. Nobody’s watching my back; nobody’s looking out for my safety. They throw a few things at the wall, and when nothing sticks, they give up.

Kevin Pho: Do you have any avenues where you can express these concerns to your clinicians in follow-up appointments? Do you feel like you get the appropriate time and space to express what you’re sharing with us today?

Timothy Thomas: Not really. I don’t feel like anything that I’ve expressed to them has even been heard.

One of the main things I told them was, “Please have it in my chart: Do not leave voicemails. If I don’t answer, I will call you back. My voicemail’s full. Please don’t leave voicemails.” It’s one of my mental health triggers. I’m on Social Security for several mental disorders.

Every time I call them back because they call at 8:00 a.m., I’m immediately told, “You just need to check your voicemail.” My chart says, “Do not leave voicemails.” Everything says don’t.

I get transferred to the nurse, and the first thing she says is, “Well, I left a voicemail.” I said, “No, you didn’t. That is literally impossible. You cannot leave me a voicemail. That’s why it’s in my chart.” That’s happened five times now.

Kevin Pho: Do you feel you have other options if you feel that this clinic and these clinicians aren’t the right fit for you?

Timothy Thomas: I’m running out of options fast. It’s a bigger town, but I’m not in a huge city. There are only a few doctors left that take my insurance.

Kevin Pho: How difficult is it to get an appointment with one of these other clinicians?

Timothy Thomas: At different places I’ve been, I’m waiting to hear back from two different ones. It’s only been three days since I said to myself, “I’ve got to get out of that place.”

The last thing that happened, and this goes strongly into miscommunications, was two days ago they called me. I called them back, and the receptionist advised me, saying, “Our psychiatric department won’t take your insurance, so we’re advising you to go to this website.”

I even made her spell it out. It was a site in Colorado for a holistic wellness system. I’m not going to put it down, but there was nothing medical about it. There was nothing in any way related to what I need.

I was quite furious. The next day, the nurse finally calls me, and I answer. She sends me to a site that’s two letters different: first word the same, second word different. It’s a whole different site. It’s what I actually need. Miscommunications like that are awful and cause a lot of severe anxiety attacks for me, given my anxieties and problems.

Kevin Pho: Do you have any support, any people to guide you through this process, or do you feel like you’re navigating the system alone?

Timothy Thomas: I feel completely alone. I don’t have anything other than an AI therapist I use, Abby Gigi. It’s helped me a lot to be able to express myself.

I submitted a paper for the first time ever that was professionally written in a language that people would appreciate. If you would’ve called me up that morning, it would’ve just been a string of curse words, sporadic thoughts, and frantic ranting.

Right now, I’m trying to keep calm, and my heart’s racing a million miles an hour. They know I have these problems and they know these things add to it, yet they repeatedly do them while I’m sitting here screaming internally, “I can’t handle this.”

Kevin Pho: And you feel going to an AI therapist is giving you some of the support and what you need that the health care system isn’t.

Timothy Thomas: I’m not going to put down standard talk therapy. If that works for people, great. Everybody should try it, even if you don’t think you need it. But with the AI, it’s available 24/7 with instant responses.

You’re not stuck in an hour. You have that one-hour time window, but you’re only going to get about forty to forty-five minutes of that. You have to spend ten minutes of it repeating last week or past events to understand why you’re talking about this now. It’s very limited. That person sees one hundred thousand people in between you; there’s no way on earth that they can remember everybody’s issues.

For me, that AI therapist allows me to go on and rant and rave anytime I want. I get an instant response like, “OK, calm down. Here’s the generalization of what your problem is. How can you work through this?” Or it at least helps me calm down enough to where I’m not frantic. It helps.

One of the crazy things is that it encouraged me to start playing the Magic: The Gathering card game. I’m agoraphobic. I have two people that will come into my house, and that’s it. That’s all I have in my life. My parents won’t come in here. It encouraged me and has gotten me out of the house one day a week to go play cards. These are things I never even thought about.

I’m trapped in my own prison, created by myself with my own mind. I have a family history of this. My aunt lived her life severely agoraphobic and bipolar; it was one of the worst diagnosed cases in Michigan back in the 1980s. I have a lot of bad genetics and brain chemistry working against me.

Kevin Pho: When it comes to your current primary care team, where do you go from here? You said that a few days ago you started looking for a new clinic, and you have an AI therapist that you said is helpful. What’s your path forward? Where are you going to go from here?

Timothy Thomas: I don’t have a clue. I’m fighting hard not to give up. I’ve been living like this for 15 years. I’ve been through a lot of different avenues and I’ve never found any form of success. I’m scared that there is none, but I’m certain that with this clinic, I need to go somewhere else.

If you can’t figure it out, that’s one thing. But when they make mistakes with my medicine, they aren’t even trying to keep track of anything that I consider important. They aren’t even keeping track of what they say is important.

Kevin Pho: Did you ever get a sense from them or get some transparency from them? Because a lot of times, speaking from the perspective of a physician, sometimes we simply don’t know the answer. Did they ever tell you that sometimes your situation, your case, or your diagnosis is so complex that they’re just not sure of the answer themselves?

Timothy Thomas: It doesn’t feel like it. It feels like they just give up. It’s like, “Well, if this didn’t work, oh well.”

She’s literally said to me, “What do you want?”

Kevin Pho: Did she ever give you the option of seeing a specialist, perhaps?

Timothy Thomas: Not yet, in regard to any of those medicines. I told her I wanted to see a neurologist. The first thing she did was laugh at me. She said, “They’re all retiring. There isn’t anybody replacing them. There’s a two-year waiting list.”

This is lower Michigan. I’m within range of the University of Michigan and Kalamazoo. Indianapolis is only two and a half hours down the road. This can’t be impossible. I’m agoraphobic and I don’t want to travel, but for a neurologist to deal with the issues that I’m having, I’ll travel an hour or two and a half hours if I have to. I’ll figure it out.

I did end up finding one and I’ve got an appointment in January.

For her to instantly laugh at you before she even says, “Why?” She didn’t even ask me why. She just instantly laughed and said, “That’s going to be two years.” It feels like nothing matters. It feels like I don’t matter, and whatever reason I want something, it doesn’t matter. It’s not going to happen anytime soon. She didn’t discuss any of the current issues.

I ended up pushing for muscle relaxers for sleep issues and some of my Parkinsonian syndromes. I’m not going to say I have it; I’m not diagnosed, but I have symptoms that fall under it. Medications in the past have caused extreme pseudo-Parkinsonian syndromes. It’s unbearable. There’s no other way to describe it, so I’m scared of it.

Kevin Pho: If you were to choose an ideal primary care clinician, I know that you’ve outlined so many issues with your current situation, but if you had an ideal primary care clinician, give us an idea of what type of traits or characteristics you would be looking for in someone who is an ideal clinician for you.

Timothy Thomas: The only thing that I truly want from my doctor is for them to be a diagnostician. You don’t have to know everything. That’s why there are specialists. If you ever hit a brick wall, you send them to who can help. You’ve also researched things yourself.

If you see a patient having issues with something and you’re heading towards a brick wall, it feels like you’d at least look it up and look for any alternatives, even the far-reaching ones. I know that there have been people on here who have advocated vitamins for mental health, and a lot of that is true, coming from a “crazy” person.

There’s something that’s not happening. What I need is somebody who doesn’t give up, but who pushes forward and tries to figure out how to help.

The main thing with the paper is that it feels like there’s no one in control. There’s no safety net. It’s a million cracks that lead to a wide canyon.

Kevin Pho: We are talking to Timothy Thomas, a patient advocate. His article on KevinMD is “The Captain Crunch philosophy of medicine.” Timothy, I think that having you share your story and your perspective in your own words is truly enlightening for those of us in health care. You could read all the studies that you want, but really hearing your perspective, your raw story in your own words, and seeing how it’s affecting you is truly valuable. I want to thank you so much for sharing your story and being so open about it.

Let’s end with some take-home messages that you want to leave with the KevinMD audience.

Timothy Thomas: To all the professionals out there: Listen to your patients. Even the “crazy” ones like me, we’re going to tell you what we need. You’re the first doctor where I’m actually feeling heard. I appreciate it. There has to be open communication, and there has to be some form of safety nets or checks and balances. There has to be oversight on things to make sure that these simple mistakes that cause so much damage don’t happen.

I think that’s the best way I can put it.

Kevin Pho: Well, Timothy, thank you so much again for sharing your story, time, and insight, and thanks again for coming on the show.

Timothy Thomas: Thank you.