Marguerite
Active Member
It's possible I should put this in Parent Emeritus, but it is complicated.
It all boils down to the way medication for ADHD is administered in our country. Our kids have been seen by a pediatrician who was able to continue prescribing ADHD medications until they turned 25, at which point they had to be referred to a psychiatrist. And for us, that is where the problems have started.
Complicating this - all the friends and relatives who tell me I have to learn to let go, I have to let the kids work their problems out for themselves. After the events of the last few months, the next person who tells me this will be told to go bag their head. Or something less polite.
difficult child 1 was the first to move on to a shrink. I went with him to the first appointment, so did daughter in law. But the doctor (a one man practice, no receptionist) didn't want to see us and insisted on seeing difficult child 1 alone. difficult child 1 wanted one of us at least, in there with him. The doctor said no. daughter in law & I sat in the anteroom for an hour, wondering what was happening. No history taken from either of us, and I knew that difficult child 1 would not be able to give a good history on his own. A lot of stuff would get missed.
difficult child 1 found over time that having a shrink who has no receptionist (or any staff) means that he also doesn't answer his phone. This bloke wouldn't return phone calls either. So difficult child 1 decided to leave that doctor, but did not get a referral to anyone else. If I had been in the loop then I could have organised something. But our difficult children can't organise their own way out of a wet paper bag...
easy child 2/difficult child 2 turned 25 last August. Because of work commitments she did not attend her last schedule appointment with her pediatrician, so she didn't get her final prescription from him. The docs prescribe six months worth of repeats at a time. easy child 2/difficult child 2 was sent a referral which she promptly lost. I finally took charge when I realised both kids were running low on medications.
I began to ring around - who was available who would see the kids? Hardly anybody, in the time we needed. I found a practice that sounded good, they were available (more important) and could see the kids soonest. The appointments were February. Different docs in the same practice, because for whatever reason (alleged conflict of interest) they had to see different doctors.
I was not able to go with difficult child 1. Neither was his wife, I since found out. So he went alone. Okay, he's a big boy, 28 now. His doctor wrote a prescription on the spot, but turned out got it wrong. We have to deal with a specific pharmacy who need the prescriptions written a particular way for legal reasons. So difficult child 1 rang the doctor, told him of the problem and apparently the doctor said he would fix it and call difficult child 1. Six weeks passed, nothing. difficult child 1 ran out of medications. Not pretty, he gets violent when off his ADHD medications.
Now to easy child 2/difficult child 2. I was able to go with her to the new shrink. easy child 2/difficult child 2 wanted me to go in with her, the doctor was okay with this. Thank goodness! First appointment, initial consult, always more expensive. $450. easy child 2/difficult child 2 put it on her credit card. "Come back next week," the doctor said. "I'm not finished with my assessment."
O-kay...
Next week didn't happen, I had left home and was almost at easy child 2/difficult child 2's place when they rang to cancel. Next appointment was another two weeks. Then it was $320. And the next week. And the next week. So now we're over $1400 out of pocket in six weeks. easy child 2/difficult child 2 can barely afford her rent, let alone bills like this. So I paid. But I'm not a bottomless well.
The doctor had said at the first appointment easy child 2/difficult child 2 needed a neuropsychologist assessment. The logic made sense. I also scraped together what old test results etc we had and took them along.
Problem - we're broke now, need a free clinic for the neuropsychologist. Only none of the free clinics are open, they're all too full at the moment. We told the doctor who I don't think believed we were trying hard enough. We kept getting pressured to go private; the doctor refused to write the prescriptions until the neuropsychologist assessment was done, but it looks like we can't get one done until nearly December. I asked the doctor to prescribe the medications in the meantime. I was told no, Dept of Health rules require the assessment be done first.
Well, that didn't make sense to me. Why would a handover situation like this put a patient at risk of having no medications? If we had seen the new doctor the day after easy child 2/difficult child 2 turned 25, she still would be running out of medications before the neuropsychologist was done. So I rang Dept of Health to find out for myself. In the process, I was put through to every mental health clinic in the eastern seaboard, given every bit of useless information and advice (including to take her to the ER if she is in crisis and they'll help - actually no, they cant help because of the prescribing laws) and finally tracked down every possible alternative psychiatric practice available. The public system seems to be no go; either she's too old (over 25), too young ("we only assess dementia patients") or out of area ("we only see people in western Sydney"). Almost all are too busy and we'd have to wait six months or more, plus they're generally expensive. Our national health insurance is supposed to mean cheaper fees for those on low incomes (like the kids). But no discounts here. Insurance doesn't even cover half the cost.
So I began to nag. Dept of Health confirmed (and sent me copies of the regs) that the doctor was BSing me about the statutory requirement for the neuropsychologist. I spoke to the doctor this afternoon and now I'm being told, "It's my ethical standards that won't let me prescribe until we have confirmed the diagnosis."
I said, "She's been on the same medications for fifteen years under specialist's care. The regulations allow for prescriptions to continue pending further assessment. We're happy to have the assessment but can't wait until it's time."
The doctor still refused. However, said that while dex couldn't be prescribed, Strattera could be. I reminded the doctor that difficult child 3 had reacted badly to Strattera after only three days on it. We still had some of difficult child 3's old medications, I mentioned.
"Then give difficult child 3's medications to easy child 2/difficult child 2," the doctor said.
So I said, "You won't prescribe the same medications she's been taking, but you want her to try a new medication, one her brother was taking and reacted badly to, and in fact you want her to take her brother's old medications. You don't know the dosage but you say, 'give her half the dose two days a week.' In what way is this alright with your ethical standards?"
The doctor was very nice although did make a pointed remark about me calling the practice multiple times today, which I did not, I had left a message for the two docs the day before only. However, I had made contact with the practice's governing body first thing this morning, ONE call, which was returned late morning (message tag) and I then called that person back late this afternoon. At another office location. So despite the doctor being nice, I detected some snarkiness.
Now back to difficult child 1. While I was trying to find out stuff from Dept of Health, I got a desperate phone call from daughter in law. "difficult child 1 is out of medications, has been for a month and I can't cope with him. He's getting aggressive if I try to ask him what is happening about his medications."
Okay, crisis time. That was when I rang the practice about difficult child 1's doctor and said the problem needed to be fixed. According to difficult child 1, the doctor was supposed to call him when the new script was ready. But he'd heard nothing. The idiot was waiting to hear from people who had clearly forgotten about him. So I got in the car and went to collect difficult child 1 and take him to the Emergency Public Mental Health Clinic. I said what the Health Dept official had told me to say and difficult child 1 was seen. They took a history, said, "Sorry, we can't prescribe for him, this is too specific. But we can give you some support." They rang and left a scorching message for difficult child 1's doctor, including the instructions I'd already left ("call the pharmacy and sort out the paperwork pronto"). They gave me the number of a free clinic which I have since telephoned (left message, no reply as yet).
I'd heard nothing all day today until the practice manager rang me. On the subject of difficult child 1, I was told, "It's been six weeks since he saw his doctor. He must see the doctor again before a prescription can be written."
In vain did I protest that the only reason six weeks has elapsed is because difficult child 1's doctor dropped the ball, stuffed up.
Meanwhile - difficult child 1's doctor responded to the desperate calls, and telephoned the pharmacy. difficult child 1 now has his prescription. Of course, it still has to be posted to the pharmacy who have to check it to make sure it is correct, then they courier out the medications. A week at least.
Trying to juggle both kids' needs has been driving me nuts. I'm also worried because this will be difficult child 3's story in a few years.
I talked to easy child 2/difficult child 2 tonight, after her doctor rang me. easy child 2/difficult child 2 is furious. Says that there are now too many reasons for her to not trust this doctor again. Too many dealbreakers. Wants to make formal complaints.
I may have sorted out the medication issues, but it means we have to start over and lose time and money. I've found that because easy child 2/difficult child 2 started on these medications at age 10, it's long-term usage and therefore the system will allow a neurologist to see her. So I've asked my neurologist to see her and she's in next week. However, he still may not be able to prescribe. Plus I have to organise a referral from both the GP and the pediatrician (getting a copy of her old referral will do). We just need prescription coverage for six months, until we can get through the waiting time for someone who doesn't charge like a wounded bull.
easy child 2/difficult child 2 is worried about safety while driving. There was also an incident at work last week and she was called in today to give evidence - only she couldn't remember the important points. I had told the doctor that without medications, she will lose her job and not be able to complete her studies. I cannot understand the intransigence of this doctor.
husband thinks we've got grounds for complaint with the medical board. But I don't think it will work out, this doctor is VERY persuasive and manipulative. That was another thing that had been concerning me - things that were said to easy child 2/difficult child 2 about other things. She was advised that she needs to seriously consider whether to have kids or not (because both she and her husband are possibly on the spectrum). She was also told one of her other specialists had lied to her about her treatment (for stomach problems). So if we begin formal complaints, I do think it will be a waste of time and energy. And that is coming from me, when I'm usually the one to urge people to take action.
If you've stuck with me this far, congratulations. And thank you. What I want to know is - what vibes do you get from all this?
Marg
It all boils down to the way medication for ADHD is administered in our country. Our kids have been seen by a pediatrician who was able to continue prescribing ADHD medications until they turned 25, at which point they had to be referred to a psychiatrist. And for us, that is where the problems have started.
Complicating this - all the friends and relatives who tell me I have to learn to let go, I have to let the kids work their problems out for themselves. After the events of the last few months, the next person who tells me this will be told to go bag their head. Or something less polite.
difficult child 1 was the first to move on to a shrink. I went with him to the first appointment, so did daughter in law. But the doctor (a one man practice, no receptionist) didn't want to see us and insisted on seeing difficult child 1 alone. difficult child 1 wanted one of us at least, in there with him. The doctor said no. daughter in law & I sat in the anteroom for an hour, wondering what was happening. No history taken from either of us, and I knew that difficult child 1 would not be able to give a good history on his own. A lot of stuff would get missed.
difficult child 1 found over time that having a shrink who has no receptionist (or any staff) means that he also doesn't answer his phone. This bloke wouldn't return phone calls either. So difficult child 1 decided to leave that doctor, but did not get a referral to anyone else. If I had been in the loop then I could have organised something. But our difficult children can't organise their own way out of a wet paper bag...
easy child 2/difficult child 2 turned 25 last August. Because of work commitments she did not attend her last schedule appointment with her pediatrician, so she didn't get her final prescription from him. The docs prescribe six months worth of repeats at a time. easy child 2/difficult child 2 was sent a referral which she promptly lost. I finally took charge when I realised both kids were running low on medications.
I began to ring around - who was available who would see the kids? Hardly anybody, in the time we needed. I found a practice that sounded good, they were available (more important) and could see the kids soonest. The appointments were February. Different docs in the same practice, because for whatever reason (alleged conflict of interest) they had to see different doctors.
I was not able to go with difficult child 1. Neither was his wife, I since found out. So he went alone. Okay, he's a big boy, 28 now. His doctor wrote a prescription on the spot, but turned out got it wrong. We have to deal with a specific pharmacy who need the prescriptions written a particular way for legal reasons. So difficult child 1 rang the doctor, told him of the problem and apparently the doctor said he would fix it and call difficult child 1. Six weeks passed, nothing. difficult child 1 ran out of medications. Not pretty, he gets violent when off his ADHD medications.
Now to easy child 2/difficult child 2. I was able to go with her to the new shrink. easy child 2/difficult child 2 wanted me to go in with her, the doctor was okay with this. Thank goodness! First appointment, initial consult, always more expensive. $450. easy child 2/difficult child 2 put it on her credit card. "Come back next week," the doctor said. "I'm not finished with my assessment."
O-kay...
Next week didn't happen, I had left home and was almost at easy child 2/difficult child 2's place when they rang to cancel. Next appointment was another two weeks. Then it was $320. And the next week. And the next week. So now we're over $1400 out of pocket in six weeks. easy child 2/difficult child 2 can barely afford her rent, let alone bills like this. So I paid. But I'm not a bottomless well.
The doctor had said at the first appointment easy child 2/difficult child 2 needed a neuropsychologist assessment. The logic made sense. I also scraped together what old test results etc we had and took them along.
Problem - we're broke now, need a free clinic for the neuropsychologist. Only none of the free clinics are open, they're all too full at the moment. We told the doctor who I don't think believed we were trying hard enough. We kept getting pressured to go private; the doctor refused to write the prescriptions until the neuropsychologist assessment was done, but it looks like we can't get one done until nearly December. I asked the doctor to prescribe the medications in the meantime. I was told no, Dept of Health rules require the assessment be done first.
Well, that didn't make sense to me. Why would a handover situation like this put a patient at risk of having no medications? If we had seen the new doctor the day after easy child 2/difficult child 2 turned 25, she still would be running out of medications before the neuropsychologist was done. So I rang Dept of Health to find out for myself. In the process, I was put through to every mental health clinic in the eastern seaboard, given every bit of useless information and advice (including to take her to the ER if she is in crisis and they'll help - actually no, they cant help because of the prescribing laws) and finally tracked down every possible alternative psychiatric practice available. The public system seems to be no go; either she's too old (over 25), too young ("we only assess dementia patients") or out of area ("we only see people in western Sydney"). Almost all are too busy and we'd have to wait six months or more, plus they're generally expensive. Our national health insurance is supposed to mean cheaper fees for those on low incomes (like the kids). But no discounts here. Insurance doesn't even cover half the cost.
So I began to nag. Dept of Health confirmed (and sent me copies of the regs) that the doctor was BSing me about the statutory requirement for the neuropsychologist. I spoke to the doctor this afternoon and now I'm being told, "It's my ethical standards that won't let me prescribe until we have confirmed the diagnosis."
I said, "She's been on the same medications for fifteen years under specialist's care. The regulations allow for prescriptions to continue pending further assessment. We're happy to have the assessment but can't wait until it's time."
The doctor still refused. However, said that while dex couldn't be prescribed, Strattera could be. I reminded the doctor that difficult child 3 had reacted badly to Strattera after only three days on it. We still had some of difficult child 3's old medications, I mentioned.
"Then give difficult child 3's medications to easy child 2/difficult child 2," the doctor said.
So I said, "You won't prescribe the same medications she's been taking, but you want her to try a new medication, one her brother was taking and reacted badly to, and in fact you want her to take her brother's old medications. You don't know the dosage but you say, 'give her half the dose two days a week.' In what way is this alright with your ethical standards?"
The doctor was very nice although did make a pointed remark about me calling the practice multiple times today, which I did not, I had left a message for the two docs the day before only. However, I had made contact with the practice's governing body first thing this morning, ONE call, which was returned late morning (message tag) and I then called that person back late this afternoon. At another office location. So despite the doctor being nice, I detected some snarkiness.
Now back to difficult child 1. While I was trying to find out stuff from Dept of Health, I got a desperate phone call from daughter in law. "difficult child 1 is out of medications, has been for a month and I can't cope with him. He's getting aggressive if I try to ask him what is happening about his medications."
Okay, crisis time. That was when I rang the practice about difficult child 1's doctor and said the problem needed to be fixed. According to difficult child 1, the doctor was supposed to call him when the new script was ready. But he'd heard nothing. The idiot was waiting to hear from people who had clearly forgotten about him. So I got in the car and went to collect difficult child 1 and take him to the Emergency Public Mental Health Clinic. I said what the Health Dept official had told me to say and difficult child 1 was seen. They took a history, said, "Sorry, we can't prescribe for him, this is too specific. But we can give you some support." They rang and left a scorching message for difficult child 1's doctor, including the instructions I'd already left ("call the pharmacy and sort out the paperwork pronto"). They gave me the number of a free clinic which I have since telephoned (left message, no reply as yet).
I'd heard nothing all day today until the practice manager rang me. On the subject of difficult child 1, I was told, "It's been six weeks since he saw his doctor. He must see the doctor again before a prescription can be written."
In vain did I protest that the only reason six weeks has elapsed is because difficult child 1's doctor dropped the ball, stuffed up.
Meanwhile - difficult child 1's doctor responded to the desperate calls, and telephoned the pharmacy. difficult child 1 now has his prescription. Of course, it still has to be posted to the pharmacy who have to check it to make sure it is correct, then they courier out the medications. A week at least.
Trying to juggle both kids' needs has been driving me nuts. I'm also worried because this will be difficult child 3's story in a few years.
I talked to easy child 2/difficult child 2 tonight, after her doctor rang me. easy child 2/difficult child 2 is furious. Says that there are now too many reasons for her to not trust this doctor again. Too many dealbreakers. Wants to make formal complaints.
I may have sorted out the medication issues, but it means we have to start over and lose time and money. I've found that because easy child 2/difficult child 2 started on these medications at age 10, it's long-term usage and therefore the system will allow a neurologist to see her. So I've asked my neurologist to see her and she's in next week. However, he still may not be able to prescribe. Plus I have to organise a referral from both the GP and the pediatrician (getting a copy of her old referral will do). We just need prescription coverage for six months, until we can get through the waiting time for someone who doesn't charge like a wounded bull.
easy child 2/difficult child 2 is worried about safety while driving. There was also an incident at work last week and she was called in today to give evidence - only she couldn't remember the important points. I had told the doctor that without medications, she will lose her job and not be able to complete her studies. I cannot understand the intransigence of this doctor.
husband thinks we've got grounds for complaint with the medical board. But I don't think it will work out, this doctor is VERY persuasive and manipulative. That was another thing that had been concerning me - things that were said to easy child 2/difficult child 2 about other things. She was advised that she needs to seriously consider whether to have kids or not (because both she and her husband are possibly on the spectrum). She was also told one of her other specialists had lied to her about her treatment (for stomach problems). So if we begin formal complaints, I do think it will be a waste of time and energy. And that is coming from me, when I'm usually the one to urge people to take action.
If you've stuck with me this far, congratulations. And thank you. What I want to know is - what vibes do you get from all this?
Marg