Medication frustration

Discussion in 'General Parenting' started by Marguerite, Apr 4, 2012.

  1. Marguerite

    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."
    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?

  2. InsaneCdn

    InsaneCdn Well-Known Member

    Vibes? Mostly, you're caught in a system that doesn't allow for complex-needs kids to grow up and still need help. A GP can't continue to prescribe ADHD medications??? I'd be dead in the water if it weren't for that. All I've had prescribing for the last 10 years is GP. (Ritalin) Changing medications - I can understand. But... continuation?
  3. InsaneCdn

    InsaneCdn Well-Known Member

    Is there a medical clinic associated with the school? Sometimes they will help when others will not...
  4. DDD

    DDD Well-Known Member

    I wish I had something "deep" to share. The whole system appears to be stacked against patients who cross over to adult care. I have seen the future possibilities diminish for difficult child#2 now that he no longer has me at his side advocating for his rights and questioning the "experts". It saddens me, it irritates me, and it absolutely makes me wish that I could revert back to my 50's and have the energy I used to have for their well being. Sigh. Sending supportive hugs. DDD
  5. Marguerite

    Marguerite Active Member

    DDD, you've got it in one. There is a huge gulf in the transition. I'm also concerned at the way we're forced into seeing a shrink, who tend to focus on the illness and not on positive function. We've raised our kids to see themselves as - "this is how I am, I have some issues but I also have some gifts." And now they're under scrutiny while the shrink labels every little foible as a disease process.

    I'm also upset by the amount of manipulation from this doctor. The problem is, she does not appear to be doing anything that her colleagues aren't doing with other patients. I've been telephoning around to try to find someone else we can send the kids to, and either there's nobody else, or they're expensive, or they're so heavily booked we'll be waiting six months or more. One clinic I rang talked to me like I was a brain-dead idiot - I asked when was the soonest the kids could be seen (especially easy child 2/difficult child 2). I was told with slow patience, "First take the kids to the GP for a referral to our clinic. Then when you have sent the referral to us, we'll be in touch to let you know who you will see and when."
    I said, "I need to know now, when the kids can be seen, even approximately. Otherwise we could be wasting the GP's time and the kids' time. Let's assume you have the referral. I can give you the case details over the phone, at least enough for you to know which doctor of yours is the right one for my kids, as you say. So please, give me an indication of when..."
    The lady replied, even more slowly, "First take the kids to the GP and get the referral. Then send the referral to us..."
    I said, "That is not how other doctors work."
    "It's how we work. So take your kids to the GP to get the referral..."
    I hung up. I could picture it - I would take the kids to the GP (which will take a week or more to organise, over Easter. Two weeks - Orthodox Easter/Passover is a week later, the GP is Coptic Orthodox, the pediatrician, who might also still be able to write a referral -his third one now for easy child 2/difficult child 2 - is Jewish). So let's say two to three weeks to get the referral. Then the snail mail, then wait while the clinic sifts through what could be an avalanche of referrals. Then ait for them to telephone. Then be told, "We'll see your kids in June," (which still would be sooner than some, but we're in crisis NOW).

    This morning I'm telephoning the Health Ombudsman. I think the whole psychiatric game here needs a solid shake-up. I'm noticing that the doctors and even the reception staff treat me differently, and I'm not even the patient! They talk softly and gently, making soothing noises, as if I'm 70 Kg of sweaty gelignite, likely to explode if bumped. No wonder they're all nuts...

    IC, we can use a GP for prescription of stimulant medications, AFTER they've been treated by a psychiatrist for six months, IF the shrink is happy to let the GP handle it (and in my observation, our shrinks don't like letting go of a patient) and IF the dose does not need to be increased.

  6. TerryJ2

    TerryJ2 Well-Known Member

    Sounds absolutely awful.

    Switch doctors if you can.

    Also, get POA and/or custodial rights of your kids and wave it in the dr's face. Grrr.
  7. Marguerite

    Marguerite Active Member

    Oh, and there's no medical clinic associated with any schools here. The testing (if any) would have been done by the school counsellor. difficult child 1 was tested, I was called in after the event to be told the results, but not allowed to have a copy. I got a copy sent to difficult child 1's doctor at the time (a pediatric shrink - so it was before difficult child 1 had his Aspie diagnosis) and the shrink immediately gave me a copy. And no, he won't see the kids now they're over 25, he only deals with kids. Besides, he's whacko (to use a specific clinical term that is highly appropriate). A classic example of a person going into a profession purely to find out more about himself.

    I'll call the school this morning too, but easy child 2/difficult child 2 left there at age 17, I doubt they will still have any records accessible.

    Grr! [various Aussie epithets deleted]

  8. buddy

    buddy New Member

    I think these issues belong in general along with PE because many of us are soon to face some of these issues and it is so good to learn from the struggles of others (didn't you want this to all be for a higher purpose....???? OK maybe not)

    I wish you could find just ONE reasonable person out there who would at least buy you some time to get the neuropsychologist done.... yikes, it is such a frustrating mess.
  9. JJJ

    JJJ Active Member

    move to the USA?

    If they only have to see the kids once every 6 months, can you look a bit further away?
  10. Marguerite

    Marguerite Active Member

    State of play now - I rang the free clinic whose number I was given, and wonder of wonders! They answered the phone. And they will call next week for intake interview.

    Now the problem - their clinic is only for those with an intellectual disability. I asked if Asperger's qualified. She seemed to think it did, then a few minutes later said, "Downs, wasn't it?" So if she doesn't know, then chances are, the kids will not qualify for this clinic.

    Meanwhile I've rung the pediatrician. Today is his last day before two weeks' leave. They said he will call me. I told the receptionist that the shrink has asked if the paediatrician will write a script for easy child 2/difficult child 2 and said I knew this was against the rules. But under these circumstances...

    Then I rang Dept of Health Pharmaceuticals - the mob the doctor has to ring when writing a prescription. They said yes, it is against therules but these are exceptional circumstances. They told me what the doctor needs to do and say, to write a 3 month script for us (which would get us out of trouble for now).

    The question is - the paediatrician is within his rights to refuse. It's asking him to go above and beyond. The shrink is the one supposed to make the call. But everyone I tell about the "tell her to take her little brother's leftover Strattera even though she's never had it before and it caused problems for her brother" is horrified and urging me to make the complaint formal.

    difficult child 1 said a mouthful of truth, I reckon. He's wondering if his sister's shrink is one that disapproves of stimulant medication in general. Has drawn a line in the sand and now is justifying/manipulating to avoid having to go back on her stated policy.

    So far, I have the appointment with my neuro next Friday. He said he MAY be able to help. $300 plus. Hopefully intake meeting for itellectual disability mob. Probably won't get in there. Possible emergency interim script from currently non-treating but long-term former specialist. I'm asking him to work for free on this one, he's already written three referrals and now has to write a fourth as well as the script. I wouldn't blame him if he refused. Then there is an appointment nailed in place for a doctor two hours' drive away. That is mid-May, but earlier than anything else. Still expensive but at least they charge less for low-income earners.

    I'm clutching at the pediatrician option coupled with my neurologist being prepared to help.

    Watch this space. It shouldn't be this difficult.

  11. TerryJ2

    TerryJ2 Well-Known Member

  12. Marguerite

    Marguerite Active Member

    Well, no script from the previous specialist. It would have required some complex paper-juggling from officials, but I did have the name of the boss official who had said he would sort the paperwork for us. However, I felt like a louse even asking. Even though I phrased it as, "Dr X [the shrink] asked me to ask you if you would write the prescription," I still upset the old doctor. I feel bad about that. I am going to write a letter for him, it should be waiting when he gets back from two weeks' leave. So I'll give easy child 2/difficult child 2 some of difficult child 3's short-acting medications to see if she can manage to dose herself with those as needed until next Friday.

    I found out last night when I talked to easy child 2/difficult child 2 that the old doctor had rung her in her lunch break and apparently then rung the new shrink to get the low-down from her. So on his last day before leave, on a really busy day shuttling between two practices, he has had a lot of hassle and interruption on behalf of someone he can't even bill for, because she's over 25. He's a darling man. He has written the referral for the neurologist, we should have that next week if it went in the mail today. We have one working day turnaround of our mail, so it should arrive Wednesday or Thursday. Although it's possible the mail will be getting sorted on Tuesday, when many businesses come back to work.

    It will be okay. In the meantime, we're wondering if the reason the shrink won't prescribe, is because she disapproves of stimulant medications. Certainly some of the things she has said about medication have me concerned. So I've asked some questions of some people we know in Pharmacology at the uni. it's handy having connections! And where you don't have connections, you make 'em!