lionheart
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Post by lionheart on Mar 23, 2013 18:34:55 GMT
Ok, so I finally had the report back from the Maudsley, they confirmed what I knew already that I have ADHD - inattentive sub-type. This is a massive weight off my shoulders but I seem to have hit a brick wall. One of there recommendation from the report was for my GP to start me on a course of Methylphenidate.
My GP said that as I am an adult(33) then this medication is off label and subsequently the GP said she is not allowed to prescribe it. The crazy thing is she said that if I was a child it would be no problem!
Anyway the Maudsley said this was a common situation and that they would be prepared, subjected to funding, to spend 3 months getting the right dose and then asked if my GP would take over. My GP said no again. She even went as far as to ask a very senior Commissioner at the NHS who said this was not allowed and her job would be on the line if she did prescribe it.
So my GP said yesterday that she will write back with a copy of the letter from the senior person NHS Commissioner stating that the Maudsley are wrong to recommend this medication for her to prescribe.
Has anyone got any suggestions please?
Does anyone also know how much it will cost to get a monthly private prescription instead?
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Deleted
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Post by Deleted on Mar 23, 2013 18:59:49 GMT
Your GP is a bit, fat, liar (if your story is correct). Methylphenidate is off label for all of us (few exceptions not worth mentioning) yet most off us with a diagnosis have/are being prescribed it. It's in the NHS guidelines as the first choice medication (NICE ADHD guidelines CG72 - page 15/16 of the short version for health care professionals guidance.nice.org.uk/CG72/QuickRefGuide/pdf/English). If your PCT has funded a diagnosis then they will fund treatment - off label is spurious bollox - doctors prescribe off label all day long for all kinds of conditions, not just ADHD. All of us on Concerta, Ritalin etc are being prescribed off label so it's not an NHS issue - there's no point your GP writing to SLAM - they know it's bollox too (they're NHS - they prescribe it and obviously aren't being sanctioned for it). I'd start by writing to the practice manager pointing out pages 15/16 of the above NICE guidelines and asking why the GP is being obstructive - fair do's if she doesn't want the first three months but after that it should be business as usual. They have the right to refuse a shared care agreement (ie prescribe off label for you) but that's it. If possible change GPs - you could do without an obstruction like this in your path. Private prescriptions vary according to medication - generic methylphenidate is moderately priced but the branded products (eg Concerta) are usually way above £100 - and getting an NHS GP to write a private prescription is ludicrous.
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lionheart
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Post by lionheart on Mar 23, 2013 19:17:25 GMT
Thanks for the NICE guidelines. I will write a letter to the Practice manager and see what happens. Failing that I will ask another GP Practice if they can help.
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Post by twix on Mar 24, 2013 15:41:16 GMT
I would change to a more helpful GP practice, even if you fight them, its always going to be an issue for them. I get mine prescribed by my gp now without any shared care agreement or any nonsense, it can be done.
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jannih
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Post by jannih on Mar 24, 2013 18:21:13 GMT
Hi
My GP prescribed MPH.
I had an initial assessment at the Maudsley and they suggested a more in depth assessment as they suspected I had ADHD PI. I failed to get referred back as it would have involved more funding. I eventually went and got a diagnosis privately.
Like you, I was prescribed MPH and the private psychiatrist gave me a small prescription initially which cost about £37. I think it last 2 weeks.
When i finished it I went back to my GP. He was willing to prescribe it as long as the psychiatrist oversaw the dosages and provided the telephone follow up and confirmed everything in writing to him. It is right to say that it is only licences for children as there has not been enough research in adults. There are rare side effects which could be lethal.
After a few months I found only a minimal improvement. I also felt that at the age of 59 I could be more prone to the negative side effects e.g. high blood pressure, cardiac problems etc. I decided to leave the medication and may look into other treatments mindfulness, CBT, diet etc.
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Deleted
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Post by Deleted on Mar 24, 2013 18:40:07 GMT
I'd play down the 'sudden death' side effect - research is continuing (I keep an eye on medical news sites) and cardiovascular damage/sudden death have been pretty much discounted as being a direct result of stimulant medication though blood pressure, if raised, may be a secondary issue.
Don't get frightened by the side effect list in the packets - diarrhea and constipation are pretty difficult to get at the same time.
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fuzzynick
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So much to explore further qEEG and DT fMRI Biofeedback & meditation Exercise & nutrition, etc, etc
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Post by fuzzynick on Mar 25, 2013 2:42:15 GMT
Personally (I completely avoid caffeine have massive sleeping problems and) methylphenidate is a last resort for me, but I Fully support those that do. For me, I would rather try modafinil as from my research so far, it is supposed to be less sympathetic ANS stimulating, even though it is still being assessed for ADHD I think
I think that having a sympathetic doctor makes such a difference, but who was the senior officer that is saying her job would be on the line if she prescribed it, and how much would it be on the line? As much as usual for any off-label prescription, or actually on the firing line
If you need it you need it
I know its much easier if you get help to find the right dose, because apparently you dont think it is working on you, only those around you can see the difference, but, if they are going to make it impossible, can you not get it shipped in from abroad and get friends and family to help? Is shipping it in cheaper too?
Is that illegal?
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lionheart
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Post by lionheart on Mar 25, 2013 8:22:54 GMT
I emailed DR Roz who runs the ADHD clinic in my area but is not accepting anymore patients. He said that 95% of GP will prescribe methylphenidate - so I have decided to look for a new GP. I have pulled up a list of local GPs in my area and will send an email to the Lead GP at each practice to see if they are more sympathetic. I feels like I am "drug seeking" but at the same time I have the report from SLAM which recommends the medication so hopefully they "get it" better than my current GP. Fuzzynick - the GP said that her job will be on the line as the Head of Commissioning from Barnet does not condone prescribing methylphenidate off label, as such, my GP said that her job is on the line if she does. Not the commissioner. Personally (I completely avoid caffeine have massive sleeping problems and) methylphenidate is a last resort for me, but I Fully support those that do. For me, I would rather try modafinil as from my research so far, it is supposed to be less sympathetic ANS stimulating, even though it is still being assessed for ADHD I think I think that having a sympathetic doctor makes such a difference, but who was the senior officer that is saying her job would be on the line if she prescribed it, and how much would it be on the line? As much as usual for any off-label prescription, or actually on the firing line If you need it you need it I know its much easier if you get help to find the right dose, because apparently you dont think it is working on you, only those around you can see the difference, but, if they are going to make it impossible, can you not get it shipped in from abroad and get friends and family to help? Is shipping it in cheaper too? Is that illegal?
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Deleted
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Post by Deleted on Mar 26, 2013 0:09:11 GMT
I find the GP's story beyond implausible. I'd change away from her simply for coming out with that sort of buck-passing BS - you have to be able to trust your GP with your life.
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lionheart
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Post by lionheart on Mar 26, 2013 10:50:08 GMT
I find the GP's story beyond implausible. I'd change away from her simply for coming out with that sort of buck-passing BS - you have to be able to trust your GP with your life. Thanks for all your advice guys. I thought I would share an update since last Friday and my red mist conversation with my GP. That conversation nearly ruined my whole weekend(including my wedding anniversary!). I joined a new GP yesterday and emailed the the Lead GP prior to registering and he confirmed that he would be happy to prescribe MTP and also confirmed he has already done so to other adult patient. Happy days! With 20/20 hindsight -my old GP really had very little education and understanding of ADHD. It really was not a big deal moving as I never really liked her anyway!
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Deleted
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Post by Deleted on Mar 26, 2013 10:56:29 GMT
Job done!
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Post by Kathymel on Mar 26, 2013 18:04:41 GMT
Yay! Glad you found a sympathetic GP and a solution.
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