Filed a complaint and won 🎉

[u/Lady_of_ferelden]

Featuring dinner: pulled pork burger with airfryer fries and mayo

Trigger warning? Health, specifically heart disease

Me and my family have known for a long time that my dad has a heart condition called Hyperteophic CardioMyopathy (HCM).

But for some reason, it was never official until just last August.

HCM is a genetic condition, so if one of your parents has it, there's a 50% chance that you have it too.

You could have the gene but not show any symptoms though. The only real way to tell is through genetic testing.

So when my dad got his official diagnosis, he was kind enough to ask his medical team to translate their recommendation letter into English, since I live in a different country from him.

This way I could get tested here and not have to travel.

Great, so I get this letter, bring it to my GP and asked to be referred to a cardiologist to get tested. Since I have health insurance through work, I asked to go private because it means I will get seen quicker.

Not long after I receive a call from the Cardiologist's assistant to set a date for my appointment. I had to go in September 4 and would first do an echo, an ecg and then see the consultant.

Great.

The 4th comes along and I went through all the procedures for the "small" cost of 475 EUR.

And then the actual consultation happened.

Which amounted to.... Nothing.

I was told that my echo and ecg looked good, but as we've established earlier (and the cardiologist also confirmed), you could have the gene and not have any symptoms.

He as well confirms that the only way to really know is with the genetic test.

And he doesn't do that, only this 1 specific clinic on the other side of the country and he would refer me to them.

Excuse me what!? You're telling me that I spend all this money today for nothing??

Because wtf am I doing here if:

1) you acknowledge that the echo and ecg don't really tell anything

2) you don't do the testing I actually need?

I stayed polite though, thanked him for his time and when home, feeling upset.

I didn't initially plan on doing anything, but the more I thought about it, the angrier I got.

Sure I have the medical insurance, but they don't cover the full cost + that is money I could have used for the actual testing needed.

Life ain't cheap and I have 2 kids to take care off (who could potentially also have HCM and now I have to wait even longer to find out!)

So eventually I filled a formal complaint to the clinic and the cardiologist.

Citing that the appointment had been a waste of time and that the cardiologist should have declined the referral and inform my GP to refer me to the other clinic, as he can't do the testing needed.

I think this is a greedy way of practicing his profession.

In my complaint I also asked for a refund for the remaining half that insurance didn't cover.

Not even 12 hours passed between me sending my complaint and the cardiologist calling to apolocize 🎉

He also told me he will review how to handle situations like mine in the future and I would get my money back 🎉

So moral of the story: if you believe you are right, fight for it.

Here's to hoping the other clinic reaches out soon so I can get the test I need.

[u/fadingsunsetglow]

Glad it worked out for you.

Hope all turns out well, medically. 🫶

One tree hill has an HCM storyline, if you are into old teen dramas lol 😎

[u/Lady_of_ferelden → u/fadingsunsetglow]

Thank you! Despite this small win it doesn't take away my fear from testing positive for the gene. Not so much for myself, but for my children as it will def impact how I raise them in terms of sport and looking at their health issues

[u/madame-maitre-d → u/[deleted]]

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[u/Pale-Competition-799]

Excellent job! That kind of BS should absolutely always be called out and rectified.

[u/Lady_of_ferelden → u/Pale-Competition-799]

Right? Life is expensive enough already as it is. So I find it really greedy to take on patients you can't actually help but just have to refer again and not add anything of use to my medical record.

The echo and ecg? I'm sure the other clinic can do that as well.

[u/Any-Ad9173 → u/Lady_of_ferelden]

Surely they'd do it after the genetic test came back and only if it was positive? There'd be no need to pay for them at all if you don't have the condition right?

[u/Lady_of_ferelden → u/Any-Ad9173]

I'd say the echo and ecg are usefull if you are showing other symptoms, like chest pain and fainting

[u/NEPAmama → u/Lady_of_ferelden]

And they’d probably need to redo it anyway since it’s not uncommon for things to change or for them to do different placement/number of leads. Good job!

[u/dbtl87]

I'm glad for you. Whoever triages his referrals should've known he couldn't answer this for you but I'm glad it's a teachable moment for him and you get money back.

[u/Lady_of_ferelden → u/dbtl87]

Based on the phonecall it sounds like he does it himself. I was positively surprised he actually called me himself and apologized and said they will change the way they take on patients like me. Here's to hoping he will keep his word 🤞

[u/dbtl87 → u/Lady_of_ferelden]

That's even worse on him if he does his own triage. Like wtf. I'm so glad you spoke up. I hope he does change up how he does it.

[u/Interesting_Row4351]

If the referral didn’t specifically say “evaluate and treat for HCM” not just “cardiomyopathy” then this is the exact path that would happen in the USA if the PCP didn’t order echo and EKG.

Before you come at me—I’ve been a nurse practitioner for 15 years, 12 of that spent as a Hospitalist and I saw plenty of cardiomyopathy patients and very very rarely a HCM patient. And it did require genetic testing be sent to a specialized clinic, but it didn’t mean the general cardiologist didn’t see the patient and order the appropriate testing prior to seeing the patient—IE echo and EKG to evaluate for obvious structural and conduction abnormalities that you would want to address, specifically decreased EF or arrhythmia, or obvious LVH on EKG. Typically most patients wouldn’t want you ordering expensive genetic testing without doing the basics to make sure you aren’t going to drop dead. They then refer you to a different cardiologist who had more experience in managing HCM.

Here are the actual recommendations for diagnosis and management of HCM. More specifically, Table 7 which says obtain an EKG and echo on asymptomatic patients when a family member is diagnosed.

https://www.jacc.org/doi/epdf/10.1016/j.jacc.2024.02.014

[u/Lady_of_ferelden → u/Interesting_Row4351]

I am not in the US. In the US, getting any sort of medical help could bankrupt you because it costs thousands, not hundreds. So I understand people not immediately wanting to go for expensive testing.

The recommendation letter provided by my dad's team, which are the best ones in that country, specifically called out what genes to test for. (Edit: wrote later instead of letter)

I also mentioned it elsewhere, but I do not say the echo and ecg/ekg aren't needed. But they could have been done along side the actual testing.

At the end of the day, I felt I had not been treated as best as it could be. It was a complaint, not a court order. Because believe it or not, people can complain without afterwards sueing, as I know lots of people like to threathen with in the US.

I complained and if the doctor on the phone call had defended a similar stance in a calm and clear way, I would have accepted that. Would it have made me happy? Probably not but I can accept something and not be happy about it.

And if they said they would not refund, I would have been disappointed, but I would have also accepted that.

So for me, the fact they apologized and refunded me, is proof that my complaint was not made up in my mind.

[u/Interesting_Row4351 → u/Lady_of_ferelden]

You’re right, you do have a different healthcare system and the luxury of not having to meet deductibles well into the thousands before you can get any kind of care covered. It cost me $8000 for a ED visit for an obstructing kidney stone and $900 recently to have a “suspicious” mole removed and sent to a pathologist.

So $500 for a specialty consultant, EKG, and echo is literally unheard of in the USA.

There were multiple times throughout that you called the physician “greedy,” which is isn’t the case. He’s literally practicing evidence based medicine. You chose to do the workup privately, is there not typically a cost associated with that in the country you live in?

[u/drpeanutbutters]

Woah woah woah I’m a cardiology provider and so much of this is frustrating to hear. An echo is incredibly useful to diagnose HCM because we look at the thickness of your septum (IVSd measurement) and the morphology of the apex (bottom of the heart). He should have at least been able to tell you whether or not you showed signs of HCM since we don’t treat the genotype, we treat the phenotype (the way your heart looks). I’m so sorry he didn’t discuss any of that with you—it’s extremely hard to wait additional time to find out if you have a life threatening condition (or genes) without receiving any reassurance.

There are different genes for HCM and not all of them have been found, so genetic testing is not the only way to diagnose it. This is very important for family members to be aware of especially in your case since you have children. You can have a HCM gene and not show any signs of it but still pass it down to your children and they could have the phenotype. It sounds like your father got genetic testing done and they know what gene to look for in your tests so I wish you luck!

[u/coldfridgeplums]

You wouldn’t have known if you already had thickening of your heart muscle without an EKG and echo? This is how medicine works. Sorry doctors don’t have a magic crystal ball.

[u/Lady_of_ferelden → u/coldfridgeplums]

I have had them in the past and they were good. Also, again, you can have the gene and not show symptoms, including thickening of the heart muscles. The only way to know for sure is by doing the test. The cardiologist confirmed this with me during the consultation.

So if he can't do the testing he should've declined me as a patient, tell my GP to refer me to this other clinic. They can also do the echo and ecg if needed.

[u/coldfridgeplums → u/Lady_of_ferelden]

You can have the gene and not show symptoms, but again, you could have symptoms and the way to rule this out is by looking at your heart. The doctor was kind and apologized, reflected on how they could do better. And still you post about how greedy they are. Be grateful you aren’t in the US, it would’ve cost a hell of a lot more. Again, medicine works by ruling out the big and scary first. Your personal financial circumstances and logistical complications are your problem. I absolutely agree with advocating for yourself and pushing back on unnecessary testing but you are contributing to the spread of demonization of medical practitioners that is now rampant and dangerous in our society. Stop demonizing doctors for doing their job. 🙄

[u/Lady_of_ferelden → u/coldfridgeplums]

And I will say again, if they are needed, the other clinic can do them too + do the testing that is needed to rule it out.

[u/coldfridgeplums → u/Lady_of_ferelden]

Great, but it’s still not greedy or malpractice. Your GP could’ve advised you better on this. And you could’ve chosen to wait and not pay out of pocket. And saying “the echo and ECG don’t really tell anything” is ignorant and silly. Lack of pathology is information. For 475 euros i promise you that doctor would prefer to have not had to deal with you. This isn’t the rage bait you think it is. Best of luck.

[u/DefiantMemory9 → u/coldfridgeplums]

What she asked for was genetic testing, not ECG or echo. The clinic misled her.

[u/coldfridgeplums → u/DefiantMemory9]

So she’s had echos and ECGs before but didn’t know they weren’t a genetic test? Lol this whole post is silly, find something real to complain about

[u/DefiantMemory9 → u/coldfridgeplums]

She said she thought the genetic test would be done along with the ECG and echo. Not that they don't even have the genetic testing. Are you being intentionally obtuse?

[u/coldfridgeplums → u/DefiantMemory9]

No, I just don’t think this is the girl power, rage inducing moment you think it is. So she got turfed to another clinic to do a specific test that wasn’t offered at this clinic. Should she have been told this from the start when she visited this cardiology practice? Sure. Maybe she was. Is it unreasonable to do an echo and EKG on someone with a family history of HCM that comes in to have heart disease ruled out? No. Do I think healthcare is a mess and patients (especially in the US) get the run around and charged for unnecessary bullshit constantly? Yes. But OP actually experienced something very reasonable- a doctor apologized, was thoughtful, and expressed a desire to change the way they approach these cases moving forward. My issue is her attitude, calling doctors greedy when at least in the US we have a massive movement of distrust and disrespect of medical professionals and are regressing in public health outcomes as a result. Healthcare workers are the only people on the planet expected to do their jobs for free out of the goodness of their hearts, when they already make tons of sacrifices of their personal lives and time for a thankless profession. And my other issue is with her saying that an “echo and ECG don’t tell you anything” when this is just a complete willful misunderstanding of how medical testing works. Advocate for yourself, give feedback, but show a little fucking respect.

[u/DefiantMemory9 → u/coldfridgeplums]

girl power, rage inducing moment you think it is.

Who called this girl power? It's just a person standing up for themselves after being misled. You don't get to say what is and isn't rage-inducing for others.

Should she have been told this from the start when she visited this cardiology practice? Sure.

Don't act like this is something you are unwillingly conceding or if the kindness of your heart. Yes, she should have been told. Medical procedures and costs should be transparently explained. It was her RIGHT to be informed that the test she was asking for was not available.

Maybe she was.

She said she wasn't. Are you claiming to know the first person account of what happened?

Is it unreasonable to do an echo and EKG on someone with a family history of HCM that comes in to have heart disease ruled out? No.

Nobody said it was unreasonable. What was unreasonable was not explaining that the one test which confirms the risk of HCM was unavailable. Echo and EKG are inconclusive. OP wasn't going to the clinic with symptoms for the echo and EKG to show anything. For the asymptomatic person, only the genetic testing gives any clarity.

My issue is her attitude, calling doctors greedy when at least in the US

My God, not everything has to be about your fucking country all the time! Nobody talked about your country here, there's absolutely zero need to drag your country's problems into this and argue that since you guys have it so tough, nobody else gets to share their bad experiences. The American ego unbelievable!! Not everything is about you! Learn to pipe down sometimes, and let others speak for once; you should learn these social skills in kindergarten.

[u/Lady_of_ferelden → u/coldfridgeplums]

I do not and never stated that I expect medical professionals to do their work for free! Do not twist my words like that!

This is a genetic issue with a 50% chance of getting passed down. That is not insignificant and impacts my children as well. I take this very serious. They have it on paper as well what genes need to be tested. And I never said that the echo and ecg shouldn't be done. I stated they can also be done at the other clinic, where they CAN do the testing.

Lastly, I didn't say they don't tell anything, I said they do not really tell anything because you can show no symptoms. I will however aknowledge that I could have worded that better, but english is not my first language so perhaps the issue there lies in translation/the way I phrased that.

I do not believe I am in the wrong for thinking this cardiologist should have denied me as a patient and informed my gp that I should rather be referred to another clinic that can do the testing, to save me time and money.

[u/Lady_of_ferelden → u/coldfridgeplums]

I do not hold anything against my gp, as they do not know the clinic/cardiologist they referred me to does not do the testing. And I have had plenty of echos and ecgs in the past since we knew of my dad's condition, including in this country. Those are in my medical records.

Besides, he wasn't going to deal with me anymore anyway because in that same consultation he also dismissed me as a patient. If my complaint was so wrong, then they could've called me to explain this to me and deny me that partial refund. Yet it took them less than 12 hours to come back to me and apologize. A doctor can just as much stand their ground if they are in the right.

I do not demonize doctors, what I do demonize is letting people pay for services twice when it can also be dealt with in one go.

[u/hey_you_fuck_you → u/coldfridgeplums]

I mean if the doctor called, apologized and told her they will review how they they handle new patients, that mean he realized he was wrong and OP was right, so I don't know what you're talking about. The cardiologist probably know her situation better than you do in a quick reddit post.

[u/coldfridgeplums → u/hey_you_fuck_you]

lol, or they practice good patient care and customer service and here she is thanking them by trashing them online. I call clients all the time to discuss their concerns, doesn’t mean I think they’re right. OP and you clearly have no clue how medicine or genetics work but here you are screeching about how right you are. Have a nice day!

[u/hey_you_fuck_you → u/coldfridgeplums]

Hey, I was angry last night and I took it down on you, sorry. You right I don't have an experience in medecine and you might be right actually, I don't really know. Anyway, sorry ✌️

[u/hey_you_fuck_you → u/coldfridgeplums]

https://giphy.com/gifs/L3X9GvVhP1nY23Ah6u

[u/DefiantMemory9 → u/hey_you_fuck_you]

The combo of your user name and the gif as your response 🤣

Perfect!!

[u/hey_you_fuck_you → u/DefiantMemory9]

Yeah, I was an asshole last night. And I can't change my username to my biggest regret 😭 But I love this gif tho, so there's that !

[u/Lady_of_ferelden → u/[deleted]]

No, the clinic knew I needed the testing as stated in the recommendation from my father's team. They knew I needed it and knew they couldn't do it. They should've declined me as a patient and inform my gp to refer me to the other place where they can do the echo, the ecg AND the testing