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Post by furiousfrog on May 23, 2013 13:14:49 GMT
I really need some advice from an unbiased person here if possible.
Sorry for the essay but I would be really grateful for feedback on whether I'm being paranoid or negative or whether I'm actually being screwed over by GP atm.
I was diagnosed add-ct about two and a half months ago now with an ASTI psychiatrist with a special interest in add and he recommended concerta. He sent a letter to my GP asking them to prescribe.
I got a text message from my local surgery asking me to make an appointment with a different GP to my usual, a week after I checked they received it. He seemed a bit odd about it, like he thought it was unnecessary. He read the report out in front of me, and then said stuff like"So, you think you suffer from adult add then?" and "this is all new for us - looks like it's just you".
He arranged for me to have an ECG and loads of blood tests to double-check that he could prescribe concerta and told me that he needed to write to the PCT to ask permission to prescribe it as, in his opinion, the prescription requests needed to come from the psychiatrist. Told me to make an appointment in a month's time.
So I went back after a month - tests were fine. He said that he needed to write a letter to the PCT (it hadn't been done) and then said he needed clarification from my psychiatrist about titration.
Psych hadn't clarified in letter but told me titration should be according to BNF, dose going up weekly as recommended. I told the doctor this and despite reading that in BNF in front of me, he said he needed to get a letter from the psych detailing this exactly.
Over the next couple of weeks, the psych team didn't receive GP's letter for a while but I got surgery to fax it over and check it was received. Then I heard nothing for another couple of weeks. I phone psych's office and they said that the psych wanted to discuss it on the phone with GP, but the GP I'd been referred to wasn't taking their calls or receiving them.
According to the surgery, the GP was on a month long sabbatical and wouldn't be back for another couple of weeks. So I asked if the matter could be referred to my normal GP who did actually know a bit more about me. I phoned the psych secretary and informed her and she got the psych to call my usual GP who had a conversation with him.
The psych office told me what was going on so I called the surgery asking if I could make an appointment. They told me that they'd asked the psychiatrist to follow up the conversation with a letter to confirm these points.
I called psych office and they were completely unaware that the GP surgery were waiting for this. The psych's secretary told me she'd pass the message onto the psych and get him to write a letter back as a matter of urgency.
This was last week and I called GP surgery - they still haven't heard anything and won't discuss the matter with me until they get the letter. Receptionist said there's been no action on my records since the conversation between psych and GP.
The psych office have been great, but I've tried calling them to find out if the letter's been sent and keep getting put through to a voicemail - no-one's called me back in a couple of days.
I'm at a loss. I'm starting to think that they're dragging their heels as much as possible to avoid prescribing concerta but there's nothing for me to get assertive about because they're always "waiting for more information." And it doesn't even look like the letter from the PCT is back either so I'm starting to think that'll be another delay.
I'm getting really disheartened though - am having a really bad time outside of this as have had 2 close family members die in the last year, leaving my mum on her own with recurring cancer who's about to have an op. Also, my daughter's having panic attacks taking her GCSE's with her own ADHD (she's on medikinet) and my job (which is always a little bit shaky due to my flakiness) is with a company undergoing a major restructure.
I'm overwhelmed with everything and just want to run away at the moment and I'm getting really upset about the GP's attitude.
Basically, I genuinely want to know if anyone thinks I'm being paranoid (I'm aware I'm not the most positive bunny at the moment) or whether it does sound like they're really being bloody-minded. If they are, does anyone have any suggestions for ways I can get this sped up a bit?
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Post by JJ on May 23, 2013 14:30:02 GMT
. I feel really frustrated and angry for you and you have my complete sympathy about this ridiculous situation. I don't think you sound paranoid at all, it does seem like they're dragging their feet... I don't know what to advise you..... Keep calling them - every day so they get sick of it? Make an appt with your gp to tell her/him your mental health is suffering by this waiting and can they help speed it up? can you go the psych office directly and speak to someone rather than a voicemail?..... Sorry nothing that useful to add but have just been told for the 6th week running that my diagnostic report for my gp should be ready by the end of next week - AGAIN. So really really identifying with your frustration xxx
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Post by furiousfrog on May 23, 2013 14:33:16 GMT
Thanks for your message, nice to know someone else thinks I've got a point! Am really sorry to hear about your delay too. I think it's really not fair - you get dx, think "that's it, things are going to turn around" and they just... drop you to deal with it while you have to wait forever for admin stuff to get done!
Fingers crossed you get yours soon!
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Post by JJ on May 23, 2013 14:36:53 GMT
Back at you xxx keep me posted xxx
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Post by furiousfrog on May 23, 2013 15:13:48 GMT
Yep, so have spoken to psych who's been great. I'm not paranoid, he's confirmed that my GP's really, REALLY don't want to prescribe and have thrown it back to them. He's said that this area doesn't have the service for him to prescribe. They've said that as I had hypertension (I take a diuretic for this and now it's 120/78) they won't be responsible for prescribing methylphenidate. He's said that another alternative is atomoxetine which they're "thinking" about.
I've been told that the very earliest I can make an appointment to discuss this with my GP is at the end of June. (he's on a "course" next week and is away for 3 weeks afterwards).
Does anyone know of a consultant that'll treat it privately and isn't hideously expensive? In or around North bucks / Beds / Hertfordshire / Northamptonshire area? Am willing to drive but I can't go on with my GP.
At no point did they ever want to get me involved with my care, or discuss anything with me but they've just given me the mushroom treatment. Am so angry.
Does anyone on at the moment take atomoxetine? What's it like in comparison with the stimulants?
My biggest worry is I was prescribed prozac by GP last time I complained I couldn't concentrate and I had HUGE problems with it, was really agitated on it and got quite manic with it - some of the common side effects of atomoxetine look quite similar?
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Post by Notlonelyinacrowdnow on May 23, 2013 15:22:58 GMT
I have An Under Active Thyroid and take MPH?? I've also had Concerta too .. Xx
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Post by furiousfrog on May 23, 2013 15:47:44 GMT
That's good to know - I might mention this. I'm absolutely terrified of taking atomoxetine - it's not like mph or dex and out of your system in 4/8 hours - half life is measured in weeks!
I got prescribed several different types of SSRI's when I was wrongly diagnosed with postnatal depression (main problems were lack of concentration and inability to relax or focus!?) about 13 years ago and I ended up losing a year of my life. I got so agitated they put me on valium and sleeping pills to reduce this and all I have left is a big black hole interspersed with memories of me doing really stupid, obnoxious and dangerous things. It worries me that atomoxetine's common side effects are agitation and mania and I'm terrified that if the same thing happens I'll just crash and burn again and have to spend years rebuilding my life.
I don't know what to do, but I can't even talk to my GP about it for another 5/6 weeks. Feels like my life's falling apart and they really couldn't give a flying f***
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Post by dizzydee on May 23, 2013 15:52:24 GMT
sounds like you've been through a lot!!
There are a couple of people on hear who take atomoxetie. I think I remember "mrsh" posting about them don't think they had taken full effect at the time but someone commented that they were good for them.
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Post by JJ on May 23, 2013 15:54:15 GMT
On the nhs website (google hypertension methylphenidate nhs - cant link it here from ipad) it says can prescribe mph with hypertension but need more care.... And in any case yours is controlled.... What does it mean ' they don't have the service to prescribe' This is an outrage this postcode lottery.... I don't live anywhere near you but really hope some one can give u info re private x I wouldn't worry about similarity of side effects re Prozac and atomoxetine - the drugs don't affect the same things. -Prozac is an SSRI, which increases the neurotransmitter serotonin in your brain - as lack of serotonin can cause depression and depression can cause lack of concentration. - Atomoxetine increases norepinephrine, which is a different neurotransmitter, and one of the two lacking in the adhd brain (dopamine and norepinephrine) and so will have a different end result and hopefully will improve your concentration. Prozac wouldn't have had any effect on your adhd then ( as it doesnt target adhd specific neurotransmitter deficits) and if it gave a bad reaction that could mean that your serotonin level was already ok so the prozac was making it go too high. They list all possible side effects and they can all sound similar, but Prozac and atomoxetine work on different neurotransmitters xxx
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Post by JJ on May 23, 2013 15:55:42 GMT
Also there's def something on the NICE adhd guidelines saying that the patient should be involved in her care....
I'm soooo cross for you xxxx
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Post by furiousfrog on May 23, 2013 16:07:45 GMT
Hey there,
Thanks for the info - have seen the website and have checked the BNF link too, the only contraindication is high blood pressure, which I don't have. There's no medical interactions between what I'm taking and what I want to take.
I do understand that atomoxetine's a dopamine reuptake inhibitor instead of seratonin, but it was the trigger when I see that the side effects are similar to the ones I've have with the SSRI's that made me concerned. Also, the long half-life is a nightmare. Coming off prozac was almost painful with frequent intermittent "electrical shocks" in my head for several months after finishing it. Am just researching now if this could re-occur with DRI's as well.
Would be good if I could actually, you know, talk about it, with someone that's involved in my care.
Am sorry, for being so negative, I'm in a bit of a state about this, think the delaying and misdirection (and lying!) has got to me and I'm just feeling really low.
Really appreciate the help tho.
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Post by JJ on May 23, 2013 16:13:25 GMT
Didn't I read something that planetdave put up recently about getting care outside of your area... Certain I did... He seems to know about this kind of stuff - can u pm him and ask him to comment on this thread? Xxxx
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Post by JJ on May 23, 2013 16:16:27 GMT
Btw - it's a NRI (as opposed to DRI) so make sure you look up the right thing (99% sure) xx
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Post by furiousfrog on May 23, 2013 16:18:43 GMT
Ohh, norepinephrine - I was thinking it was dopamine. (DRI instead of NRI!) Will look again. Thanks for post!
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Post by annie on May 23, 2013 16:26:29 GMT
Hi there
The psychiatrist (secondary care) is the person to carry out the assessment for Adhd and if appropriate, make the dx. The psychiatrist then takes responsibility for titrating the meds up to their optimal level. When that's been achieved then the psychiatrist enters into what is known as a "shared care agreement" with the Gp (primary care) who can then go on and prescribe the meds on a monthly basis.
It does sound as though your area doesn't have a "shared care agreement" This kind of agreement is set up by the Commissioners (the people who have been delegated the Health budget to "buy" the services of Gp's, Hospitals etc). Since April Clinical Commissioning Groups (CCG's) have been given this responsibility - before that they were called the Primary Care Trust's (PCT's).
Without a "shared care agreement" you are being used by both sides to say the other side is the baddy. In areas where they do have a "shared care agreement" it would be the norm for the psychiatrist to take responsibility for titrating the meds and then for the Gp to take over the monthly prescriptions. It's all about who's budget is paying for the meds.
Find out who your local CCG is and send them a letter asking them to sort out the problem. As a patient, you shouldn't have to do this but sometimes patients have to throw a bomb into the system. If you were to go private, you could face the same problem again ie Gp not being willing to prescribe even if the private psychiatrist titrates the meds to their optimum (with you paying for the private prescription)
The whole thing stinks and that's why we need as many people on here, who are finding barriers with their local Health system, to take up the cudgels and challenge the system. You can see where I got my name - Annie with the banner!
Keep going
annie
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Post by furiousfrog on May 23, 2013 18:32:22 GMT
Thanks Annie. OH called psychiatrist's office earlier as he's been a bit concerned about me today and they've told him they've discharged me now and there's nothing they can do.
Back to square one, really. Can't express just how disappointed I am with it though. I've been dismissed by GPs and counsellors for virtually all my adult life. But for the last 6 months there's been light at the end of the tunnel and in the last 3 months it's been "almost there", "just round the corner", "just one more week!" and then I can start getting my life sorted out.
I kind of feel like that's all been snatched away from me now and I've got to start again with my GP. All this time, and I thought he was helpful, just didn't really know what to do but now I've found out that he's more than capable of finding out how to stall it and avoid having to do anything about it.
Am having trouble turning my head off tonight but hopefully tomorrow will be brighter. Thanks for the kind words, they've really helped.
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Post by Kathymel on May 23, 2013 18:54:54 GMT
I don't know enough about this to make an informed statement, but discharging you without discussing it with you or ascertaining that this is what you want seems very wrong.
I don't get that he can't prescribe either. He's a doctor!
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Post by Lesley on May 23, 2013 19:43:53 GMT
I'm sorry you're being given the run-around - it really is unforgiveable! There are a couple of people on hear who take atomoxetie. I think I remember "mrsh" posting about them don't think they had taken full effect at the time but someone commented that they were good for them. mrsh's thread is called Sick of UP and DOWN!!!!! and is in the Venting section (have to be logged in to view). I think I'm the other person dizzydee mentions. I've been on Atomoxetine since January, and while the original dose (40 mg) did nothing for me, since I was put up to 80 and then 100 it's been helping a lot. It's the only ADHD medication I've taken so I'm afraid I can't help with comparing it with others. I can say, though, that I had no side effects at all. And I can remember (but can't now find) planetdave saying on another thread that the horror stories about it are all from a few years ago and they haven't been hearing the same sort of thing recently. But, if your psych recommends Concerta and there's no medical reason why not, you shouldn't have to settle for Atomoxetine for your doctor's convenience. Hope you manage to sort them out xx
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Post by annie on May 23, 2013 20:00:38 GMT
Well this is where yourself and OH have to gear yourself up to take on this crap that is called a Mental Health Service - sorry for the language, but only you will be able to challenge this appalling service!!
Every mental health Trust has a complaints service, so you need to find contact details for your Trust's complaint service.
I would address your letter to the Chief Executive of the MHT with a copy to their complaints section. In the letter I would be asking how is it a Consultant psychiatrist in your Trust has given me a dx of ADHD but is unwilling to titrate the medication to the point where the medication regime can be transferred over to my local Gp. Why is it your Trust and the local CCG have not got a shared care agreement in place for this condition, given NICE brought out guidance in 2008 showing categorically that Adhd can continue to require treatment, for approx 60% of children,dx in childhood who will require on going medical intervention in adulthood. Also say Nice anticipated many adults who were not dx in childhood will require an assessment/dx and treatment service.
This is not the time to give up - you must take on the system - it's your life they are messing about with - you desrve better, but it looks like you are the only one who is going to make that happen
annie!
annie.
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Post by JJ on May 23, 2013 20:13:30 GMT
Hi Annie - just reading your posts and wanted to thank you - your knowledge and fight are so reassuring and comforting for the newer people here - I know it's furiousfrog's issue (unfortunately for her), but it helps all of us to be more educated about these things and I wanted to let you know I'm grateful x
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Post by furiousfrog on May 24, 2013 7:43:46 GMT
Thanks again Annie - this really helps. Am going to get away from it this weekend I think, and will start raising a stink next week. The things you've mentioned are really good too - I'll be sure to work it around those points too.
I can't thank you, JJ, kathymel and notlonely enough for the kind words. I was so upset yesterday it was really good to have some support!
(heh - sorry notlonely, that reads like you're not lonely enough!)
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Post by furiousfrog on May 28, 2013 10:35:36 GMT
Hey guys, thanks for the moral support last week, it was much needed! Anyway, update came after psych called oh again when we asked some of these questions. He said that their service is for short term crisis support and they're not allowed to titrate but only offer initial crisis management medication for up to 14 days then referral to GP or tertiary service. One good thing came out of it - I'm not paranoid! Psych told us the gp surgery said they won't prescribe mph or dex and are "extremely unhappy" about prescribing atomoxetine and won't do that without explicit written permission from pct.
Apparently, they told him that in their opinion this is all pretty much superfluous - they said I've been going there intermittently about the same complaint for the last 13 years but its clear I'm just depressed but as I won't take antidepressants again, they've been unable to help me. (Even though ive always maintained im not depressed, its on my record that i'm a chronic sufferer). When they referred me to Iapt for CBT and the therapist told them he wanted them to refer me for ADHD diagnosis they wouldn't even do it then and were unhappy when he decided to do it directly (apparently, as a ologist instad of an iatrist he's not really supposed to?)
So, lessons are learnt. Psych told us to ask GP to refer us out of area to ADHD clinic in either Northampton, Cambridge or Oxfordshire. Said he'll write a report backing up the necessity of this (am concerned about GP actually going ahead with this otherwise) and, sooner or later, new gp.
Kind of angry that they've stitched me up like this and portrayed me as a hysterical depressive but at least I know I wasn't being paranoid!! think I'll visit the out of area referral post and get all this started.
Thanks again to everyone that helped!
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Post by JJ on May 28, 2013 12:09:55 GMT
OMG -so having to start a whole new long and dragged out process . This is just appalling the way you've been treated and the bloody hoops you're being forced to go through to get some help. So your psych is only short term crisis - that may be so but they must have psych's in area that deal with long term as well otherwise how would they treat schizophrenia for example - why were u not referred back to a long term one ?? And your bloody GPs!!! If you've been going back for 13 years with 'depression' and nothing they've prescribed for depression has helped and has actually been so bad that you've made a decision that you can't take or try anything else for 'depression' then wouldn't that suggest, even to the medically untrained mind, that maybe, just maybe it's not depression? And the arrogance that an 'ologist' shouldn't pick up on something and do something about it!!!! You def need a new GP - great, another thing to sort out and fight for - cos it's not already hard enough anyway ..... Keep strong furiousfrog, I'm rooting for you and just really hope you get somewhere.... On a slightly positive note - from reading stuff on here, some people have had to go through terrible fights but I've not read anything from anyone saying they've exhausted all avenues and ended up with nothing..... Small consolation I know given what you've already been through and how far it now seems that you still have to go.... Also, still seems to me that a letter to the CCG wouldn't hurt - it might also get you seen by the out of area place a bit quicker? Good luck and keep updating xxxxx
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Post by JJ on May 28, 2013 13:42:30 GMT
Btw - just looked up clonidine ( cos of janev's post) and thought of you re yr blood pressure - thought you might want to look up x
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Post by Kathymel on May 28, 2013 14:14:25 GMT
I did the very same thing and discovered I have restless leg syndrome. New thread ahoy!
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spok
Member posts quite a bit
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Post by spok on May 29, 2013 0:33:13 GMT
furiousfrog I'm sorry your journey to treatment has been so difficult. Your GP's an idiot (I can just about understand not wanting to prescribe stimulant meds but not prescribing atomoxetine either because "its clear you are just depressed" when every more specialised professional they send you to thinks you have ADHD is just arrogant and incompetent on their part).
Why can't you just change your GP? Phone up a few surgeries and sound them out about ADHD, then when you find one that is happy to prescribe switch over.
Do you mind me asking what area you live in? I need to add it to my areas to avoid living in list.
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Deleted
Deleted Member
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Post by Deleted on May 29, 2013 0:43:52 GMT
Hey there spok how are you doing? Haven't seen you around for ages. Are you ok? (Sorry to interrupt thread)
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spok
Member posts quite a bit
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Post by spok on May 29, 2013 1:13:54 GMT
Hey petra Yeah its been a while. I'm.... I'll give you a private message tomorrow; I don't think its fair to derail furiousfrogs thread with my moping. How have you been?
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Deleted
Deleted Member
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Post by Deleted on May 29, 2013 1:18:11 GMT
Ok, I'll answer properly in pm back to you tomorrow, please feel to mope to your hearts content! x
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Post by furiousfrog on Jun 3, 2013 10:56:14 GMT
furiousfrog I'm sorry your journey to treatment has been so difficult. Your GP's an idiot (I can just about understand not wanting to prescribe stimulant meds but not prescribing atomoxetine either because "its clear you are just depressed" when every more specialised professional they send you to thinks you have ADHD is just arrogant and incompetent on their part). Why can't you just change your GP? Phone up a few surgeries and sound them out about ADHD, then when you find one that is happy to prescribe switch over. Do you mind me asking what area you live in? I need to add it to my areas to avoid living in list. Hey Spok, Good to hear from you and I completely forgot to thank you for what you said last time I was going through this. (Btw - I live in Milton Keynes, apparently the provision for this here is very bad according to psych and GP.) Anyway, I'm actually feeling a little bit bad right now. Had GP appointment this morning to discuss next steps and out of the blue, he's prescribed! He's very nervous about prescribing it, particularly as the psych didn't give him any dose and titration information and he said he's really quite concerned about the side-effects of methylphenidate, but I've been given 10mg XL for a couple of weeks and will then go up. He wants to take titration very slowly as, being new to it, he wants to monitor effects at each step of the way, which I can understand. In the meantime, he's said I should really have professional monitoring of the medication and general issues with adhd so he'll prescribe until I can get a referral to a clinic. He's going to find out if Milton Keynes have a service contract with any other areas for adult adhd, otherwise he'll have to do a special request for an out of area referral. I do feel a bit bad now - my GP kind of palmed this off on another GP in the surgery and was a real pain about it, but the new GP was quite good this morning and he made an effort to go through the decision making process and why they'd been hesitant. Anyway, fingers crossed I can get referred to a specialist clinic but, regardless, feel like things are starting to happen!
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