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I’m writing to rant and also to ask for advice which can pass on to my girl. I don’t need medical advice, I need “dealing with the medical system” advice. Here’s what’s going on:
Daughter has cervical dystonia, also known as spasmodic torticollis. This causes her severe chronic neck pain and triggers chronic migraines. She has this on top of fibromyalgia. Regular exercise is important with fibromyalgia, and the dystonia makes exercise impossible. This was an ever-worsening cycle until she finally found a doctor who properly diagnosed her and began to treat her. There is only one treatment for this condition, and that is botox injections. Daughter has found these to be, not a miracle cure, but helpful.
She had been getting them about every three months and was doing reasonably well. The last time she was able to go five months before she began to feel she needed treatment. Progress, yay. Getting the shots scheduled has always been a hassle, because the doctor she goes to seems to be a fairly good doctor – after all, he diagnosed her when everyone else just kind of threw up their hands and said “I don’t know what in the hell is wrong with you, sorry.” But he is part of a big, giant practice that, as far as I can tell, is staffed by idiots. The usual procedure is like this: Daughter calls the front desk. There is only ONE person in the whole practice that can schedule these treatments, so if she’s on vacation for a week, nothing can be done until she gets back. But that hardly matters because the front desk generally transfers the call to the wrong person anyway. Whoever gets the call is not at her desk, so Daughter leaves a voice mail message. Then the person can’t help Daughter, but doesn’t call her to tell her so. Daughter waits to hear, hears nothing, calls again, and the same thing happens. Finally after a week or two of trying she manages to get in touch with the right person, who, if not on vacation, will schedule her.
The treatment is kind of a big deal, as the botox must be procured (apparently it has a shelf life of 15 minutes or something) and everything must be coordinated and scheduled carefully. The treatments are only given twice a month, and the practice insists that it takes two or three weeks to get insurance approval, even though Daughter gets it in 48 hours, so they must always be scheduled a month or more in advance.
So the usual story is that Daughter starts to be in pain, calls for an appointment, it takes two to three weeks to finally reach the right person, and this is just in time to have missed the deadline for the nearest appointment so she gets one scheduled six weeks out. Which is what happened with the appointment she was supposed to have on Friday.
Her appointment is at 3:30, so she usually arrives at 3:15 and has to wait until 4:00. She does not mind. What happened on Friday was that she got held up at work. Then she got caught in traffic. She arrived at 3:40 and was told “Too bad so sad, the doctor already left and we have to reschedule you. In a month.”
When she called me, she was well past the crying hysterically stage and had moved into the totally furious stage. She acknowledges that she was in the wrong by arriving late. But it’s not just that she missed her appointment. It’s that she missed the appointment for which she was already six weeks overdue because apparently none of the staff at this clinic can be bothered to do their damn jobs, and now she has to wait another month. In pain. Missing who knows how many days of work for which she will not be paid because she’s out of sick days due to being weeks overdue for the treatment in the first place.
And on top of all that, she was livid at the fact that no one at the front desk seemed to care. Can we get an “I’m sorry”? Can we get a bit of sympathy? No. Daughter, who is a vet tech, said “I find it ironic that the people I work with, who all went into veterinary medicine because they want to work with animals, have so much more compassion than people who work with human patients.”
So the gist of my question is how can she find a better doctor? She felt a lot of loyalty to this doctor because he diagnosed her when no one else did, but she says that he never remembers her name or whether she has dystonia on one or both sides or where he injected her the last time. She has to remind him of this stuff. I mean, would it be asking too much to, oh, I don’t know … look at her damn chart? Where, hopefully, he wrote something down? She has repeatedly asked him to refer her for physical therapy, which will not cure the condition but should be helpful. He agrees it would probably help, but never gives her a referral. Go figure that out on your own and good luck.
I, personally, think this doctor and his big giant practice needs to be fired. I think she’s ready to agree. But how can she find a better one? How can she be assured she’ll get better, or at least competent, treatment? Where does she start? Asking around to your friends doesn’t work when you have a condition that none of them have ever heard of before (and they all think you’re just a slacker).
Thoughts?
Daughter has cervical dystonia, also known as spasmodic torticollis. This causes her severe chronic neck pain and triggers chronic migraines. She has this on top of fibromyalgia. Regular exercise is important with fibromyalgia, and the dystonia makes exercise impossible. This was an ever-worsening cycle until she finally found a doctor who properly diagnosed her and began to treat her. There is only one treatment for this condition, and that is botox injections. Daughter has found these to be, not a miracle cure, but helpful.
She had been getting them about every three months and was doing reasonably well. The last time she was able to go five months before she began to feel she needed treatment. Progress, yay. Getting the shots scheduled has always been a hassle, because the doctor she goes to seems to be a fairly good doctor – after all, he diagnosed her when everyone else just kind of threw up their hands and said “I don’t know what in the hell is wrong with you, sorry.” But he is part of a big, giant practice that, as far as I can tell, is staffed by idiots. The usual procedure is like this: Daughter calls the front desk. There is only ONE person in the whole practice that can schedule these treatments, so if she’s on vacation for a week, nothing can be done until she gets back. But that hardly matters because the front desk generally transfers the call to the wrong person anyway. Whoever gets the call is not at her desk, so Daughter leaves a voice mail message. Then the person can’t help Daughter, but doesn’t call her to tell her so. Daughter waits to hear, hears nothing, calls again, and the same thing happens. Finally after a week or two of trying she manages to get in touch with the right person, who, if not on vacation, will schedule her.
The treatment is kind of a big deal, as the botox must be procured (apparently it has a shelf life of 15 minutes or something) and everything must be coordinated and scheduled carefully. The treatments are only given twice a month, and the practice insists that it takes two or three weeks to get insurance approval, even though Daughter gets it in 48 hours, so they must always be scheduled a month or more in advance.
So the usual story is that Daughter starts to be in pain, calls for an appointment, it takes two to three weeks to finally reach the right person, and this is just in time to have missed the deadline for the nearest appointment so she gets one scheduled six weeks out. Which is what happened with the appointment she was supposed to have on Friday.
Her appointment is at 3:30, so she usually arrives at 3:15 and has to wait until 4:00. She does not mind. What happened on Friday was that she got held up at work. Then she got caught in traffic. She arrived at 3:40 and was told “Too bad so sad, the doctor already left and we have to reschedule you. In a month.”
When she called me, she was well past the crying hysterically stage and had moved into the totally furious stage. She acknowledges that she was in the wrong by arriving late. But it’s not just that she missed her appointment. It’s that she missed the appointment for which she was already six weeks overdue because apparently none of the staff at this clinic can be bothered to do their damn jobs, and now she has to wait another month. In pain. Missing who knows how many days of work for which she will not be paid because she’s out of sick days due to being weeks overdue for the treatment in the first place.
And on top of all that, she was livid at the fact that no one at the front desk seemed to care. Can we get an “I’m sorry”? Can we get a bit of sympathy? No. Daughter, who is a vet tech, said “I find it ironic that the people I work with, who all went into veterinary medicine because they want to work with animals, have so much more compassion than people who work with human patients.”
So the gist of my question is how can she find a better doctor? She felt a lot of loyalty to this doctor because he diagnosed her when no one else did, but she says that he never remembers her name or whether she has dystonia on one or both sides or where he injected her the last time. She has to remind him of this stuff. I mean, would it be asking too much to, oh, I don’t know … look at her damn chart? Where, hopefully, he wrote something down? She has repeatedly asked him to refer her for physical therapy, which will not cure the condition but should be helpful. He agrees it would probably help, but never gives her a referral. Go figure that out on your own and good luck.
I, personally, think this doctor and his big giant practice needs to be fired. I think she’s ready to agree. But how can she find a better one? How can she be assured she’ll get better, or at least competent, treatment? Where does she start? Asking around to your friends doesn’t work when you have a condition that none of them have ever heard of before (and they all think you’re just a slacker).
Thoughts?
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