<p>Again, in those “sweeping generalizations,” I was describing the system, and many of the things I listed have been told to me by physicians themselves. I was not painting MD’s with a broad brush, but describing obstacles that affect both MD’s and patients.</p>
<p>I have long done research to prevent harm to my kids, and it can be uncomfortable with some MD’s, and some of these MD’s have skills that we need. So we have developed subtle ways of steering care without appearing to do so.</p>
<p>When we find a doctor who is truly not good to work with, we keep looking. And we find great doctors ultimately, and have been very happy with them.</p>
<p>However, here are some of the experiences we have had:</p>
<p>A major children’s hospital administering insulin to my child at 1 am: I asked them to consult me first, luckily because they had mixed up the decimal point, and the dose, which was therefore 10 times what was needed, would have killed her. What makes this worse is that they did not report the error in the notes, and actually changed the decimal point in the order and notes, to make it correct. I got a copy of this and they used a different pen to add “0” and a decimal.</p>
<p>An ER doctor and staff did an asthma treatment for one of our babies, very sick, and told me to take her home (3rd visit in 2 days). I refused, and they got a nurse to stay with me, as if I was irrational, while they talked about it. I asked for an oxymetry, which showed very low oxygen levels. They said, “Oh my God, the mother’s right” and she was admitted for 7 days. She was too tight to make the wheezing noise they were expecting. She would have died if I had taken her home. At least in that case, they apologized.</p>
<p>A doctor prescribed an anticonvulsant that has major effects of blood sugars (which we researched, but the effect was complicated, and this is a college student on her own). Paramedics had to be called for the 1st time in 20 years of insulin use, to revive the teenager. The doctor who prescribed the meds (neurologist who knew nothing about diabetes) yelled at the patient on the phone, blaming her, and dropped her as a patient. Luckily she was home: in he dorm room, she would have died.</p>
<p>I fell badly on icy steps, landing on my back, requiring ER care, where they did an x-ray, which was negative for fracture. For four months, I went to our PCP saying that my back must be broken, I was in horrible pain, and was told to be patient, it wasn’t broken. I was even sent to a chiropractor for adjustments! When I finally saw a specialist, I learned that spinal fractures didn’t show up on x-rays for 72 hours. My back was broken in 3 places.</p>
<p>My husband’s stroke did not result in paralysis, speech or motor problems. It hit his executive functioning, and caused a lack of insight,as well as other cognitive problems that are not immediately apparent. He told MD’s from the start that he was “fine” which went in the record. The MD’s wrote that he was “normal” because he could touch his nose and had reflexes. A local MD sent him to a local neuropsych. who said he was “just depressed.” He lost his disabilty. I researched and convinced insurance to pay for a neuro-psych who specialized in stroke, who concluded that he had no insight, found many cognitive problems, and concluded he could not work again. This specialist told me that not many MD’s understand this type of stroke, and don’t have time to research it. </p>
<p>I could go on forever folks. At least 20 more stories like this.</p>
<p>When meeting with the many good doctors we do find (and perhaps after some of these experiences I could get a little credit for being open-minded here about all the good ones), we talk about the system, and why certain things happen or don’t happen. I am not saying the doctors I am describing are bad people. The system has a lot of problems, and poses a lot of safety issues.</p>
<p>I have been told by at least 3 doctors that they are unable to do anything outside of appointments, by the way. One of them was a very caring alternative doctor. He would try to make contacts with specialists during the appointment, or research, but that was part of his paid time. One of them was an absolutely magnificent GI MD at a teaching hospital. We saw him in an appointment after a surgery that had gone quicker than usual, and he actually had a few extra minutes, so when we provided a specialist’s care he actually called while we were in the office. Normally, he said, he is too busy and cannot do that.</p>
<p>I have actually had trouble working for the last 17 years because coordinating care for a family with many health issues is so time consuming. And then, I have to act deferential and even act a lot less smart or informed than I am, to access care.</p>
<p>If you think I am bitter, then you don’t understand. I am way, way past that, but it is good for people to hear these stories. This is just the way it is. I don’t doubt at all the hard work and suffering of the physicians, not one bit. We are all caught up in a complicated system that doesn’t work.</p>
<p>There is one poster here who may be the rudest person I have ever encountered on these forums, so once again, I am going to try to stay out of this. But to that person: when you have walked in my shoes for 17 years, you will have a right to “speak” to me that way, but right now, don’t patronize me.</p>
<p>This is way off topic, so with apologies…</p>