I have seen this in my personal life time and again. I have seen it in my professional life time and again.
The only way though the mine field is to take personal ownership over your Healthcare, you need to learn more about what ailes you than the doctors know. You need to be confident in this knowledge enough to challenge them and walk out to receive better care at any moment. This is why people say that healthcare us such a trap in the US particularly. If you are injured and incapacitated you can't advocate for yourself, and if you don't have the support infrastructure in place in your personal life we are just one medical event away from financial and physical ruin.
> The only way though the mine field is to take personal ownership over your Healthcare
Shortly after graduating from university, when I no longer had access to student health, I started hunting for a regular family physician. The guy I found... my first "let's get to know each other/annual physical" kind of appointment he said "Look, I don't know if you noticed but there are a lot of people out in the waiting room. My staff here is great, but things happen. Maybe they call you with test results and you miss the voicemail. Maybe the lab forgets to send the results. Maybe the fax from the lab gets stuck to another piece of paper. We're all human here, and I try really hard to treat each one of my patients as a real human and not just a list of symptoms on a page. If I'm going to be your doctor, there's only one thing I ask: be your own advocate. If you're expecting to hear back from us and you don't, or if you feel like we've missed something, or you have questions, or... anything really, please don't hesitate to follow up. I promise I'm going to do my best to look after your health, but you care about it more than anyone else in the world. Does that work for you?"
He was, by far, the best damned doctor I've ever had. And then, apparently, one day he had a serious family emergency back home and vanished, never to return :(.
He know the realities of the system and is doing his best to get his patients good care.
It's like my first day of high school. I had a history teacher. The entire first class of history in high school was devoted to knowing yourself. He told us in basic terms how our bodies worked, that we shouldn't try to dp homework after a big meal, how we should use our resources, how we should be respectful, how learning the laws and history of our country could personally impact or protect us from injustice.
He treated us like equal human beings he truly wanted to help, not just work he had to do that day.
You're doctor did the same, blessings on him.
Everyone in the UK should get to experience a private consultation just once. The difference between the rushed 10mins you get with the NHS and the considered 30mins you get private is amazing. You leave feeling like you’ve been taken care of and all your questions have been answered. It’s only when you see this you can see just how bad the quality of care in the NHS is at the moment. We need to stop equating the NHS with the people that work for it and start calling it out for how god awful it is. We’ve made it a dirty that can’t be criticised properly when it sorely needs to be.
However, I do want to provide an anecdote to illustrate that private healthcare is not perfect. I had some persistent pain in my foot. Realized I wouldn't get anywhere with the NHS so I went private. The person I saw had an excellent manner. They suggested some fairly gnarly surgery. Said I should think about it and in the meantime they gave me an anti-inflammatory injection. My problem cleared up in about two weeks. What was wrong: I have really really wide feet (seriously; they are wider than the widest setting on the foot measuring device they use at shoe shops.) I didn't know this. I was wearing Chuck Taylors, which are very narrow, and they were pinching my feet. I didn't wear my Chucks over the two weeks and I figured out what was wrong in that time. What I learned: everyone has a toolbox they want to reach into. In this case I was seen by a surgeon so they of course turned to surgery as solution. Always be your own advocate, to the best of your ability, in healthcare. (I thought the surgeon might have said something about the width of my feet given they spent so much time looking at feet.)
There might be an age component to it: the risk of it not healing correctly increases with age.
This is true for fairly simple cases. But when something is complex or very serious you want a true multidisciplinary team that sees the most cases per annum - that is the NHS.
A private consultant in a nice office with a very nice efficient secretary is great for their particular expertise but outside of that poor. This is based on more experience personally and with family than I would wish anyone to have.
I was diagnosed after a blood test (in the US) but they just put me on a statin (high cholesterol medication) that fixed only what the blood test showed and did not treat the problem. Now I’m having to, with 10 fewer years than when learned it, drastically adjust my life and diet to ensure I won’t develop additional complications.
Why are we so hilariously bad at treating chronic problems?
Btw through generic genealogy, I’ve managed to pinpoint which branch of my family that this comes from and they’re all from Yorkshire. Given how rare it is, there is a nonzero chance we are cousins of some sort if you have semi-recent ancestral origins there.
They time their appointments ever 2 minutes so you’re expected to arrive early. Once you start, they wiz you around to about a dozen tests including getting hooked up to electrodes while running on a treadmill. After less than an hour you see a doctor who goes through everything for about 15 very detailed and thoughtful minutes.
The entire thing is FREE! Completely publicly funded.
I don’t know much about healthcare but this type of thing always struck me as a missing apparatus of healthcare in the US. Although apparently Favoloro (who invented some kind of bypass surgery) founded the Institute after being inspired by the Cleveland Clinic.
Would love to hear other people’s thoughts on this because I tell that story all the time!
USA healthcare system burns me out.
I don't know how effective it is, and how much of it is theater.
They may not know either.
Most of our research is studying how well treatments work on "patients that came in with _____ symptoms and we found test X Y and Z was outside of the normal range".
Does that mean you should use the same treatments when you have X Y and Z out of range but without symptoms? We often don't know.
Interesting. I was considering commenting that your experience sounds a lot like the VIP (using the term loosely here, it's much more accessible than "multi-millionaire") care available at the Mayo Clinic. You can accomplish in a day or two what would typically take months to years in many areas of the US, including mine.
I can't really common about the US, but here in the UK the quality of healthcare is shocking bad. Although we may have the opposite problem, where instead of doing unnecessary procedures to increase costs, the NHS generally tries to avoid doing anything unless you're dying.
I had some pain in my abdomen a few years back and had persistently elevated liver enzymes. My doctor told continuously told me not worry about it and would say the pain was probably because I was sitting funny and other nonsense. In their opinion I was too young to have liver problems so there was no point in doing any further tests.
Fed up, I decided to do my own research and pay for my own tests. From this I found out that I have a fairly rare generic condition which makes me highly predisposed to liver disease and NAFLD. Certainly not the end of the world, but it pissed me off a bit because the disease could have progressed had I taken their advice and simply ignored it.
Around this time I also had a family friend who was the same age as me. She went to the doctors repeatedly over the course of a year describing several symptoms she was experiencing just to be dismissed. Turns out she actually had cervical cancer, but they never ran any tests and kept telling her it was probably nothing to worry about. By the time she found out she had cancer it was stage four and she died a few weeks later. She was 28 and had two kids.
Like you I believe in listening to experts. Most experts know what they're talking about and generally give good advice, but it's important to keep in mind the conditions experts operate in. Here in the UK the NHS has neither the time or money to give you high quality healthcare. It doesn't really matter if you see the best doctor in the world, if they can't spent the time and money running the tests you need you're not going to get a good diagnosis.