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Post by manson88 on Jun 12, 2013 8:57:00 GMT
Shite isn't the word why has the system a habit of Creating anxiety? They just don't seem to get do they really. They are adding to are issues treating us the that they do, rant over. Sent from my GT-I9300 using proboards
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Post by Kathymel on Jun 12, 2013 10:28:05 GMT
I know someone who felt great on her first dose. I have no idea what the typical dosages are for MPH, but if you get *some* positive expected effects from it, then that is your proof right there. Go with what you've got so far and see. If things go well (in terms of getting any good effects - even if any bad effects you might get outweigh the good as that is where the alternative medications come in), then you can go back to NHS and tell them what's been going on, and based upon the evidence would they take up your care? If they don't... Well we'll cross that bridge when we get to it as a lot will depend on your body's reaction and the circumstances at the time. Give yourself a pat on the back for getting something sorted! A bird in the hand and all that... Also, totally didn't see this thread for a while because after my quiet spell this was a little way down the list of recently updated threads. Using the phone app means I still get that page Sent from my GT-I9000 using proboards Hi DKL, I was sort of thinking along those lines this morning. If there is the slightest positive effect, even if it's outweighed by a heap of negative ones, I have something to work with. I did think, even if there are no positive effects on the first few titrations of MPH, perhaps I could pretend there were and just go with it until something actually happened. Not sure I could or would want to maintain a deception like that though, but it was a thought. As for the NHS, I have been wondering about my plan of attack there, too. The NHS psych, Dr Roberts, said he couldn't refer me to the NHS specialist, but, once I am on medication and it is working, perhaps I could be transferred. I did wonder if I could write direct to the specialist and ask his opinion. If he was agreeable, that might be a powerful thing to persuade Dr Roberts to refer me? Just waiting to find out if the surgery get the report this morning, then hopefully I can make an appointment and go get my prescription! Trying not to get too excited in case something else goes wrong. :/
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Post by Kathymel on Jun 12, 2013 10:33:46 GMT
so sorry to read you are getting all this shit kath it just seems never ending i really feel for you and am very impressed with yours and jj's posts discussing how to deal with it i think you both must have higher iq levels than me as i feel totally overwhelmed just reading it all !!! my brain is feeling fried this morning so can't contribute anything to the thread - - - but am with you in spirit xx I don't think you have a lower IQ at all, Jan. I just think we all have different levels of impairment that prevent us from making the most of our brains. You have more than one disorder which means it is really hard for you to process stuff. The fact that your disorders were not diagnosed means you have been unable to benefit from the school system, which fails anyone who is not NT. I love your contributions on this forum. You have huge insight into people's problems and are caring and sensitive and it shows. I missed you last night. x
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Post by Kathymel on Jun 12, 2013 10:40:34 GMT
Shite isn't the word why has the system a habit of Creating anxiety? They just don't seem to get do they really. They are adding to are issues treating us the that they do, rant over. Sent from my GT-I9300 using proboards I asked the NHS psych yesterday why they have to make things so difficult for us and create so many barriers. He said they didn't, but that Adult ADHD was so difficult to diagnose ... meds don't work ... outside referrals were so difficult ... blah, blah, blah. I thought, can you hear yourself? Do you actually listen to yourself and believe what you hear? Grrrr.
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Post by JJ on Jun 12, 2013 11:27:07 GMT
I was just reading your latest updates and got all incensed for you again. Looked up British Association of Psychopharmacology. Www.bap.org.uk/pdfs/ADHD/_Guidelines.pdfIt's the treatment recommendations for adhd. It's written by Prof David Nutt as well as loads others, I'm 99% sure that it's referred to in NiCE guidelines. It specifically says 'treatment response can not be used to make diagnosis' (Under the section about treatments obviously - about page 10 ish. I have more to say but wanted to tell you that straight away x
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Post by Kathymel on Jun 12, 2013 11:43:37 GMT
Wow! Thanks, JJ. Thank you for finding that and letting me know. You are fabulous! Don't know what I would have done without this forum and the lovely people I've found here.
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Post by JJ on Jun 12, 2013 12:02:29 GMT
Professor Asherton (works at maudsley and researches at Kings College) wrote the bap.org guideline recommendations (with Nutt etc) and Asherton also helped write the NICE guidelines.... So there's your link.
Bap.org guidelines also say that all psychostimulants work better than placebo and that mph has 76% efficacy. Dex (I think was about the same), so it clearly NOT difficult to treat the core symptoms. (P12)
Also (my musings now), anxiety and depression, bipolar, autism and all the other mental health things are only diagnosed by observing and reviewing behavioural symptoms and self assessment - no blood tests or scans are used in the general diagnostic assessment - so adhd isn't weird in that it just requires an experienced, qualified practitioner to properly evaluate. So as long as the proper assessments are carried out (Connors being one of them), it can be diagnosed.
Btw- the bap.org guidelines also give a price comparison for drugs - and the dosage of mph they used was 30mg 3x per day - if they used this as a comparison then this must be the most common amount needed for optimum response.
Also another thought is that your prescribing guidelines in your report go up to 60mg/day. This is the child recommended max, the adult is 100mg/day.
Lastly, my head is much better today, I think the 15mg is making a small difference, I def feel calmer and a little more energy. House still a mess and work to do but don't feel so rooted to the sofa, I'm not about to jump up and do something but it doesn't feel as much of a mountain - just giving you a bit of hope that I'm feeling more optimistic.
Keep us posted xxxx
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Post by JJ on Jun 12, 2013 12:06:32 GMT
so sorry to read you are getting all this shit kath it just seems never ending i really feel for you and am very impressed with yours and jj's posts discussing how to deal with it i think you both must have higher iq levels than me as i feel totally overwhelmed just reading it all !!! my brain is feeling fried this morning so can't contribute anything to the thread - - - but am with you in spirit xx I don't think you have a lower IQ at all, Jan. I just think we all have different levels of impairment that prevent us from making the most of our brains. You have more than one disorder which means it is really hard for you to process stuff. The fact that your disorders were not diagnosed means you have been unable to benefit from the school system, which fails anyone who is not NT. I love your contributions on this forum. You have huge insight into people's problems and are caring and sensitive and it shows. I missed you last night. x Jan - everything that Kathymel said and especially the last paragraph - every bit of it and FYI - out of everyone, your posts make me chuckle the most xxxxxxxxxxxxxx
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Post by Kathymel on Jun 12, 2013 12:46:52 GMT
Thank you again, JJ.
I need to start getting all of this info into an easy to read format, then I can get in contact with Dr Basa and start arguing.
I also need to step away from this for a bit, I think. I'm using the forum to put off phoning my GP to find out if the report has arrived.
I also need to write a long email to my son's school in reply to one from his year tutor today saying he is still failing to complete any work in most of his subjects. They seem to have no awareness of ADHD at all and think if they just keep on telling him off and nagging him to focus and work harder, they are holding up their end. They now want a meeting, so I need to get everything I need to say written down or it wont get said.
Anyway, that's a subject for another thread.
I'm buggered. I didn't go to bed last night, just dozed on and off on the sofa. I have a headache and I haven't had breakfast yet (and neither has the poor dog), so I'm going to try to shut the laptop and do something else, even if only for a few minutes.
Just remembered I bought muffins yesterday - so much more exciting than toast. That'll get me moving. x
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Post by Kathymel on Jun 12, 2013 12:57:42 GMT
And I need a pee!
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Post by Kathymel on Jun 12, 2013 20:19:12 GMT
Well, Dr Basa finally rang me. He explained that he was going to refer me but that his consultant, Dr Roberts had overruled him, declaring that there was not sufficient evidence for an assessment. I've never met Dr Roberts.
My Connor's report was maxed out on many of the inattentive symptoms. I had masses of evidence of current and childhood symptoms of inattention, but that doesn't count, apparently. He will send a report to my GP.
So when my GP gets back to work on Monday, she will get both the private psych's report saying I do have ADD and the NHS psych's saying I don't. Jesus! What a fucking mess.
I asked for a report to be sent to me detailing Dr Robert's reasons for refusing to refer me, saying I needed to know his reasons so that I can appeal against them, but Dr Basa said he can't guarantee that Dr Roberts will do that.
Now I'm worried that my GP will want to or have to go with the local psych's diagnosis and I'll end up with nothing. Can't cope with this at all. Completely knotted up and in danger of doing something stupid.
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Post by Kathymel on Jun 12, 2013 21:47:51 GMT
OK. Calmed down a bit now. Not much that a glass of red can't help with.
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Post by jan on Jun 12, 2013 22:05:00 GMT
i'l say it on your behalf FUCK FUCK FUCK!!!!! now enjoy your wine - do something else nice like a bubble bath or something then when your ready - tonight or tomorrow - you got all the ammunition you need from all that stuff from jj - you just got to put it all together - like you do when your doing your essays for uni - and hit 'em with it you can do this - you know your in the right and your not gonna let the bloody system get one over on you - are you - NO (If you have to. imagine your doing it on behalf of your son if that'l help to motivate you ) you can sort this - i have every faith in you anything i can do just yell xx
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spok
Member posts quite a bit
Posts: 119
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Post by spok on Jun 13, 2013 1:42:42 GMT
Kathymel I'm really very sorry to hear all this.
They're being such bastards! Given you have a private diagnosis, given all your childhood evidence and if I remember right you have a child with ADHD, you have lots of evidence! Given what they have said to you about the specialist will have just as hard a time as them (in that case why does the NHS even bother to set up specalist services and not just use general services for ADHD diagnosis?)I think they just don't want you to get a NHS diagnosis, regardless of your problems.
What "evidence" exactly do they want to of seen for you to get a referral?
Saying out of area referrals is difficult so we're not going to do them is just a joke. These are well paid professionals. Can you imagine somebody in the private sector saying to their client "that's difficult, so, I'm not going to do it, because well, I just can't be arsed"?
Its not time to panic just yet though, if your GP still prescribes, and you get benefit, you may be fine after all. If not, raise hell!
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Post by manson88 on Jun 13, 2013 6:00:40 GMT
Get the fire going in your belly! Oh i feel your pain!
You are so close to the end just hang in there, you still have a right to be heard & a second opinion.
I would go to primary care team raise the issue they are actually creating anxiety for you which you don't need.
Next step your mp.
Take care manson
Sent from my GT-I9300 using proboards
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Post by Kathymel on Jun 13, 2013 7:14:35 GMT
At the moment I'm just hoping that the NHS psych/internal mail will prove to be as slow as everything else in the NHS and my GP won't get the report until after I have my meds safely in my hand. Praying she won't want to wait for his report before she hands them over!
Really don't want to think about what measures I will have to take if it goes any other way.
Thanks for all your support guys, it really means a lot to me that you are all here. x
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spok
Member posts quite a bit
Posts: 119
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Post by spok on Jun 13, 2013 10:34:27 GMT
Be careful though Kathy, your GP might ask you how it went with the NHS Psychs if they have not received the report yet. Even if you don't lie but don't say they felt there isn't enough evidence to justify a referral to ADHD services, your GP may later feel like you have deceived them, which won't go down well.
I can't believe they have said "The Meds don't work"! The medication for ADHD is more effective than for any other medication for any other disorder in Psychiatry!!! What are they on about?
Grrrr. I'm thinking if things go pear shaped a well wrote letter to your GP could be all that's needed.
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Post by Kathymel on Jun 13, 2013 12:59:27 GMT
Oh, I know, Spok. It's such a tightrope walk! I've been thinking of nothing else for 24 hours, trying to work out what to say so that I'm not being dishonest, but putting it in as positive a light as possible. I think the main thing is that they haven't said I am not ADD, just that they haven't found sufficient evidence for it and on this basis they don't want to refer. I think they are general psychs, rather than specialists and I know Dr Basa had not diagnosed someone with adult ADHD before. The only adults with it that he knew of were people who had been diagnosed as kids. One of his objections was that I was older than anyone he knew with ADHD - he seemed to think this was a very good reason why I couldn't have it. The private psych is at least a specialist in child/adolescent diagnosis, even if he didn't know quite the right questions to ask, or recognise the traits which are considered common in adults. That's very interesting that ADHD meds are more successful than meds in other psych areas. Do you have a source for that info that I could quote from? I've already written dozens of letters in my head already. It's quite knackering.
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Post by dizzydee on Jun 13, 2013 13:09:05 GMT
I'm so sorry to hear that things have gone tits up. I really feel for you
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Post by Kathymel on Jun 13, 2013 13:14:37 GMT
Thanks, Dizzy. It's so good having you all here, knowing you get it, even if few other people seem to.
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Post by JJ on Jun 13, 2013 14:57:39 GMT
The source for it being one of the most treatable psychiatric conditions is Russell Barkley in his lecture called something like understanding and treating adhd - it's on You Tube and probably on his website.
Xxxx
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Post by Kathymel on Jun 13, 2013 16:06:37 GMT
Thanks, JJ.
Started watching one video and it seems to automatically load another immediately afterwards. I could be there for hours. Learning lots I didn't know. It's fascinating. It's helping me to write the email to Genghis's head of year, at the mo.
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Post by Lesley on Jun 13, 2013 18:45:32 GMT
Hi Kathy
I'm so sorry you're having to go through all this. Not much I can do to help, but on the tiny little point of your age, I will just tell you that I was diagnosed at 61, and that I have read (in Adventures in Fast Forward by Kathleen G. Nadeau) of a woman who was dignosed age 74.
Good luck with it.
Lesley x
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Post by Kathymel on Jun 13, 2013 19:36:11 GMT
You've already helped me immensely on the other thread, so thank you.
Yes, the age thing is annoying and so obviously bogus. It's like he's suggesting that ADHD was only invented a few years ago and no one had it before then. Absurd.
Phoned my GP today and the private psych's report still hasn't arrived. If he'd sent it by stage coach it would have been flipping quicker!
Grrr!
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Post by odat on Jun 13, 2013 20:34:34 GMT
You've already helped me immensely on the other thread, so thank you. Yes, the age thing is annoying and so obviously bogus. It's like he's suggesting that ADHD was only invented a few years ago and no one had it before then. Absurd. Phoned my GP today and the private psych's report still hasn't arrived. If he'd sent it by stage coach it would have been flipping quicker! Grrr! Have you checked with the psych's secretary to see if the report has been sent? Typically surgeries take a day or two to scan results in. FWIW, I always had the secretary send me a copy of any letters etc so I could take them with me to my apt. That way if the letter etc wasn't on the system, I could still get my rx etc.
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Post by JJ on Jun 13, 2013 21:46:23 GMT
Have you checked with the psych's secretary to see if the report has been sent? Typically surgeries take a day or two to scan results in.. One of my many jobs started and left was as GP receptionist and things would take ages to be scanned.
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Post by Kathymel on Jun 13, 2013 22:01:44 GMT
I emailed the psych earlier today to ask when it was sent. The receptionist at my GP's said that letters have to be scanned on to the computer, now. Does that mean that the GP won't action them until they are scanned?
I've had my copy of the report since Monday evening, but thought the GP probably wouldn't do anything until she had hers. Do you think I should just print off a copy and go in with it? She's not in until Monday now, anyway.
I've also left a message with Dr Basa's secretary, asking him to send me a copy of his report at the same time as he sends it to my GP, so I can digest it a bit before I have to defend myself against it. Not sure if he'll comply with my wishes, though.
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Post by JJ on Jun 13, 2013 22:13:46 GMT
GP won't even get to see until scanned.
I would book up appt for earliest for dr and take your report with you
Is his report to GP just a copy of what you already have? If it is, I'd ask the surgery to scan it onto your file for the GP to see
Actually, even if its a separate one for the GP, it still has your recommended meds and titration, I'd take to surgery and ask them to make a copy for your doctor to see in advance of your appointment (which you should have already booked)
Yep - skip middle thing, make appt and ask surgery to photocopy for dr.
If private psych gets in day before NHS then scan delays will work in your favour
God, it's so fraught - I really feel for you xxx
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Post by jan on Jun 13, 2013 22:14:27 GMT
its just stress stress more stress - - and then some !!!! and after my friend told me that today - ffs he's been prescribed for 9 years and then they just say sorry can't prescribe!!!! all of this is sooooo ridicilous !!!!! - not often i'm speechless - - - - -
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Post by Kathymel on Jun 13, 2013 22:28:01 GMT
The first 2 appointments of any day are bookable, so I will see if one of those is available for Monday morning, otherwise I shall just have to join the 8am scrum and try to get one on the day. I'll take a couple of copies of the report with me in case she hasn't got it yet. I have the same report that she will be getting.
So much for technology making life quicker and easier! My surgery won't accept emails and then take days to scan letters. Insanity.
Jan, your poor friend! That's just cruel.
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