|
Post by manson88 on May 31, 2013 13:36:00 GMT
Aye spoke to gp today put my chlorpromazine up on things calm down a bit from my mood falling down after pyscolgy on Tuesday.
Went to patients council as well they are chasing up waiting list time for scan spoke to them about what pyscatrist said willing to DX not so keen to prescribing meds due to the follow up care.
So I'm on the ball thanks for asking!!
Sent from my GT-I9300 using proboards
|
|
|
Post by dizzydee on May 31, 2013 14:33:16 GMT
thanks for my hugs girls!!
|
|
|
Post by JJ on May 31, 2013 14:44:49 GMT
Hope things'll feel bit better then after dose upping Manson. Well done for keeping on in there with them. Really hope you get some positive news soon - fingers crossed for you
How u feeling today dizzydee? Any better?
|
|
|
Post by Kathymel on Jun 10, 2013 19:06:00 GMT
Thought I'd post a wee update.
My consultation with the psych was nearly 2 weeks ago. He wanted me to have some basic tests so I had them last Monday at my GP surgery. On Weds, I asked the receptionist to confirm if they had been sent to the psych - she said she couldn't find any record of it, but promised to phone me later to confirm. She didn't. On Friday, I emailed the psych to ask if he'd received them. No reply.
Grrrrrrr!!!!
Anyway, I decided it wouldn't hurt to continue pursuing the NHS process as well, so that any future med issues can go through them. I have my consultation with the non-specialist psych tomorrow. Really ought to be re-organising my notes.
|
|
|
Post by jan on Jun 10, 2013 19:13:32 GMT
ooh dear sounds like another jj scenario - as in like will take 400 phone calls etc hope not good luck tomorrow xx
|
|
|
Post by JJ on Jun 10, 2013 19:25:02 GMT
My head is so thick I can't remember anything im reading so cant reply properly to anything, but good luck for tomorrow xxxx
|
|
|
Post by manson88 on Jun 10, 2013 21:13:18 GMT
These professionals are hard aren't they! #notnice Sent from my GT-I9300 using proboards
|
|
|
Post by Kathymel on Jun 10, 2013 21:43:28 GMT
Thanks guys. I hope it doesn't get to the same situation as JJ's. My GP has at least said she is happy to prescribe. These professionals are hard aren't they! #notnice Manson, when you consider this online service was set as a reaction to long waiting times and unnecessary barriers to diagnosis, they're not winning my confidence by not replying to emails. This is the second that has gone unreplied. I have agreed to become a patient advocate for them, but they are going to have to improve some things before I recommend them to anyone. I know they are new and they will obviously have things to iron out, but I am fed up.
|
|
|
Post by Kathymel on Jun 10, 2013 22:07:43 GMT
Unbelievable! Looked at my email after posting this and there is my psych report!
I've read it through once and the bit that sticks is this - he has recommended I start on Methylphenidate titrating up to 20mg twice a day over a period of 2 weeks. He then goes on to say, "If there is no effect at this dose, it would indicate that this medication is not effective, and suggest a diagnosis of ADD is not appropriate."
I'm a bit taken aback by that.
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on Jun 11, 2013 0:50:45 GMT
Unbelievable! Looked at my email after posting this and there is my psych report! I've read it through once and the bit that sticks is this - he has recommended I start on Methylphenidate titrating up to 20mg twice a day over a period of 2 weeks. He then goes on to say, "If there is no effect at this dose, it would indicate that this medication is not effective, and suggest a diagnosis of ADD is not appropriate." I'm a bit taken aback by that. That is shocking and not even scientifically accurate. Totally understand why you feel taken aback x
|
|
|
Post by Kathymel on Jun 11, 2013 1:27:32 GMT
Thanks for that, Petra. It set my self-doubt monsters into full swing for a bit there.
I'm trying not to let it get to me, now. I had already concluded he had little or no experience of adult ADHD by the questions he did/didn't ask (he's a child ADHD specialist). I also know I didn't give a very good account of my symptoms at the consultation and just rambled on about crap. Even though I'd got my notes with me, I didn't take them out of my bag. Doh!
Much more organised for tomorrow. I have re-typed my notes so they are less completely random and I'm going to use them. Unfortunately it's now 2.30. Oh, well.
|
|
spok
Member posts quite a bit
Posts: 119
|
Post by spok on Jun 11, 2013 1:34:32 GMT
Unbelievable! Looked at my email after posting this and there is my psych report! I've read it through once and the bit that sticks is this - he has recommended I start on Methylphenidate titrating up to 20mg twice a day over a period of 2 weeks. He then goes on to say, "If there is no effect at this dose, it would indicate that this medication is not effective, and suggest a diagnosis of ADD is not appropriate." I'm a bit taken aback by that. Quack Quack Quakery pure and simple. Can you imagine an oncologist saying something like "As your radiotherapy hasn't been effective we have decided you don't have cancer, goodbye". Or a dermatologist saying "So the cream I have prescribed for your dermatitis hasn't worked I see, well in that case you don't have dermatitis! That patch there, its just an illusion, was never actually there, as if it was, the cream would of worked!" I'm not sure your money was very well spent kathymel.... Sorry.
|
|
|
Post by Kathymel on Jun 11, 2013 1:52:53 GMT
I'm not sure your money was very well spent kathymel.... Sorry. You may have a point. On the other hand, I did get a positive diagnosis for £100 and it will get me the meds for now. If they don't work I am very definitely going to argue to try alternatives and use all the evidence on here to back me up. So, I'm not sure my money was entirely wasted either, Spok.
|
|
spok
Member posts quite a bit
Posts: 119
|
Post by spok on Jun 11, 2013 2:17:58 GMT
I'm not sure your money was very well spent kathymel.... Sorry. You may have a point. On the other hand, I did get a positive diagnosis for £100 and it will get me the meds for now. If they don't work I am very definitely going to argue to try alternatives and use all the evidence on here to back me up. So, I'm not sure my money was entirely wasted either, Spok. Yeah I understand. Who will you argue it with? The GP or the Psych? You could be in with a hell of a fight either way. The Psych wont like his competence being questioned. The GP will find it hard to accept some of the psych's assertions while selectively ignoring others. You may have to find a new Psych. Hopefully it wont come to that though, I really hope you find the meds helpful.
|
|
|
Post by manson88 on Jun 11, 2013 6:10:18 GMT
Really feel your pain, it's not nice is?
Can sort of see why they are sending me for a brain scan.
Hope it will sort itself out for you. Keep your chin up.
Sent from my GT-I9300 using proboards
|
|
|
Post by jan on Jun 11, 2013 6:58:08 GMT
ooooh kath what a bummer! sounds to me that you could do a better job than him i would suggest swapping jobs - he can do the advocating role - though doesn't even sound like he could manage that!! surely when they set this service up they would of done some homework on adult adhd i'd even go as far to say they should of been checking thing out on here! all the pshycs i looked up when was considering getting dx reccomend this site on their web site. trouble now is in order to get what you want from them you'l have to tread carefully around his ego!!! you can do that though girl j xx
|
|
|
Post by Kathymel on Jun 11, 2013 7:40:05 GMT
Yeeeeees. Not very good at treading carefully round people, Jan. In fact, I'd say it's one of my defining character traits, lol. I'm going to go through the titration as far as it goes, and only start complaining if it doesn't work. He's effectively given me 2 to 2 1/2 weeks to find out if the meds work - how ridiculous is that? I have been trying to work out a tactful way of explaining to my GP that this report is less than ideal and that the psych didn't really know what he was doing. I worry I'm just going to sound like I'm sore because I don't like what he's written. I'm also worried that he is giving me less than his full attention because I got a discount and he knows I don't want to pay anything more. For now I just need to keep my fingers crossed that the first meds work. :/
|
|
|
Post by JJ on Jun 11, 2013 8:56:05 GMT
My head still not working properly so nothing coherent or useful to say except 'what the f**k' ? His premise that if doesn't work you don't have is crap - and why would NICE mention mph,dex and Stratt if everything was always sorted with mph... Omg, I'm so angry for you. Don't doubt yourself or your diagnosis ... Xxxxxxx
|
|
|
Post by JJ on Jun 11, 2013 13:35:06 GMT
Who's doing the titrating? GP or psych? If GP, are they experienced or sympathetic?
I think good idea to keep on with the NHS assessment for the time being cos you might need that as back up (I think that's where you are today?)
When are you starting the meds then?
Sorry if you've already said all these things, I'm really rooting for you and want to know what's going on / offer support etc, but my stupid brain is getting in the way xxxxx
|
|
|
Post by Kathymel on Jun 11, 2013 18:29:04 GMT
I'm so fucked off, I don't know where to start.
Appointment with NHS psych today, Dr Basa. I felt I did a much better job of explaining myself than I did in the private consult and even remembered to get out my notes this time, but came up against a wall of reasons why it wasn't worth referring me to a specialist.
1. It's very difficult to diagnose adult ADHD. 2. The meds very likely won't work. 3. A specialist will have just as hard a time diagnosing me as Dr Basa would. 4. It would take a very long time to get an appointment. 5. Perhaps I would accept an appointment with the head the service, Dr Roberts, instead. 6. Outside referrals are very hard to make.
I managed to argue against every point he made. Told him I am very aware, having been researching this for 7 months, that there are no guaranteed results. Asked him if he expected me to say, 'Oh well, if it might not work, it's not worth bothering, then.' and explained that any chance of improving my life was worth taking. Told him I wasn't prepared to waste my time with yet another non-specialist, that NICE guidelines say only a specialist can diagnose and insisted I wanted an outside referral.
He agreed.
Hurrah! I felt so good about standing my ground and managing to be assertive. I went and spent a very pleasant afternoon at a local National Trust garden.
Got back to the car and there's a message on my phone from Dr Basa saying Dr Roberts has refused to make the referral. I can appeal, apparently.
So. I now have two possible battles to fight. On the one hand, it sounds like the private psych will wash his hands of me if I'm not seeing any results in the first 2 1/2 weeks, unless I fight him. And on the other I can fight the NHS brick wall.
What is the likelihood of getting positive results from I.R. methylphenidate in such a short time? Has anyone had such quick results?
Help!
|
|
|
Post by JJ on Jun 11, 2013 18:50:48 GMT
FFS I'm so angry for you.... Have you contacted the private psych to ask why he wrote what he did? Has your GP seen this report yet? Asking cos he might change that wording in the report then you don't have to f**k about with the NHS crap I know I'm the worst person to think about re mph working, but my dr was v surprised at my reaction (as was Dizzy's) so there seems to be a better than not chance you will see good effects. What's the qualifications / level etc of yr private psych - is he consultant / published / involved in research etc - just thinking about NHS fight now - whether his report will count for anything in an appeal... Sending you big hugs xxxxx
|
|
|
Post by Kathymel on Jun 11, 2013 19:08:31 GMT
Hello JJ. God, it's good to have people like you on here to help make sense of things!
Right. I emailed the private psych last night to say it was OK to forward it to my GP, so no going back on that.
I didn't ask why he wrote what he did because I thought it might be better to try the drugs first and then argue if they don't work. I am sort of assuming that he doesn't want to spend any more time than he has to with someone who he knows can't pay for further consults. I also thought, if I could collect evidence of people who had a hard time on MPH initially, but found it worked (or found something that worked) after several weeks/changes of meds, then it would create a stronger argument.
Good to know yours and Dizzy's reactions aren't typical. I will try to find some more titration diaries on here and see if I can't up my optimism levels.
The private psych has these after his name: BSc MBBS MSc MRCPsych. No idea if he is published in any way. His speciality is actually child and adolescent ADHD (amongst other things), but I felt beggars couldn't really be choosers.
Thanks for being there, JJ.
|
|
|
Post by JJ on Jun 11, 2013 19:29:06 GMT
Hmmm, does sound like it's more to do with paying for his time rather than anything else. If adhd is one of his specialities then it's just non-sensical that he would put if mph doesn't work then no adhd - my psych didn't mention anything about this to me and it's not like the maudsley wouldn't know...or the NICE people either....
Do you know how long you have to appeal? Do you know how long it is before you can start medication? Did he write anything specific about how quickly to titrate?
Just thinking about how long you'll have to see if meds work before you have to get an appeal in - which might then be unnecessary.
If it helps with your optimism - I've taken my second 15mg dose today (18.40), I've not felt tired yet, I'm eating now (but not a big amount and only cos it was there cos I had to make for the boys) and my head feels the most clear it's felt since I've started medication. I don't feel as sharp as I normally do, but things are def a little bit better - so something might work. On my thread Grim (I think that's the name -sorry if wrong- said 20mg was when it worked.
Xxxxxxxxxxx
|
|
|
Post by Kathymel on Jun 11, 2013 19:38:21 GMT
Non-sensical is the word, isn't it! I can't see any other reason for his decision other than money. Considering that he wants me to be a patient advocate in return for my discount, he isn't going to get much positive advocacy going about things this way. I would shout his praises to the rooftops if this worked, but ...
The titration he is recommending seems really hasty. Hang on, will cut and paste ...
"Medication might initially consist of an Immediate Release methylphenidate preparation, initially at a dose of 5mg BD (8am and Noon) for two days to ensure no immediate adverse effects. This dose can then be titrated up to 10mg BD, 15mg BD then 20mg BD allowing 3-4 days between dose increases."
Dr Basa said that he will ring me tomorrow, so I will find out Dr Robert's reasons for refusing to refer and how long I have to appeal then.
So glad to hear your meds are settling down a bit. Hope it lasts! x
|
|
|
Post by JJ on Jun 11, 2013 19:58:33 GMT
I know what you mean about hasty, but actually maybe not so much. I know everyone's different, but that's about the speed I've gone.
For me anyway, it seems the first dose/day of a new amount has completely done my head in (being thick and unable to think) but then the next it's been a bit better as far as that's concerned - not right, but not as bad. There was still the tiredness / no motivation / hunger / brain not right- all of which horrible, but not as horrible as the brain not working thing. Therefore for me personally I wouldn't be too worried about the speed of it (though you should make sure you've done everything urgent so not much head work needed while you start). And of course, the impatience to see a result will be helped.
In fact, I didn't take anything for 2 days (after the first day) cos I needed to work and I started it all exactly a week ago.
Do the NHS psychs know you have a private diagnosis? Was just about to write make sure you can quote all the private psych's experience etc when you speak to dr who refused referral, but then wondered if they even knew? If they do, then presumably you'll need an answer to them asking why you want NHS diagnosis then?
Xxxx
|
|
|
Post by Kathymel on Jun 11, 2013 20:19:23 GMT
OK, I'll stop worrying about the titration speed, then. One thing less to worry about is good. And, yes, I would have got impatient going slowly. They do know about the private diagnosis and asked that very question. I told them I couldn't afford to keep going to the private psych and that if the meds got complicated I would need an NHS one. I wonder if they thought they'd be better off saving their money for someone without a diagnosis?
|
|
|
Post by JJ on Jun 11, 2013 20:39:15 GMT
Maybe that's it... Trouble is, it's hard for you to argue your case for a further diagnosis when you have a diagnosis... It'd all be ok if he hadn't put about the stupid 2 weeks thing.
I can't help thinking though that even if you don't get a good reaction with the meds, it'll be quite hard to argue with your private diagnosis with regard to not going any further with meds on NHS. I mean the diagnosis is there, presumably your report summarises your difficulties in each area and lists the assessments they did... I can give you a list of the names of the questionnaires I had if you want - I copied them all, they can't be far - it might help you to know it was all standard stuff if you need to argue the case.
I think you need to speak with NHS man tomorrow, argue your case etc but at the end ask him to put it all in writing for you (use your adhd diagnosis as a reason if he objects). That will give you some extra time to wait and see if the meds work and therefore whether you need to pursue this part anyway.
Btw - look at what grim just wrote in my thread re nothing happening then it all working - it'll give you hope x
I really hope you can get the bloody meds started ASAP, this is just such a rubbish situation xxxxxxxxx
|
|
|
Post by Kathymel on Jun 11, 2013 20:59:40 GMT
I can't help thinking though that even if you don't get a good reaction with the meds, it'll be quite hard to argue with your private diagnosis with regard to not going any further with meds on NHS. Except that he plainly doubts his own diagnosis when he writes that if the meds don't work, it's not ADHD. Kind of lessens the impact of the report. I did the Connors questionaire with the private psych and the Adult ADHD Self-Report Scale (ASRS-v1.1) with the NHS one. Most boxes in the inattention bits were up to the max. I've also done every online one I could find. Good idea to get something in writing from Dr Basa. I did think of trying to record the conversation so I could play it back later, but that's a much better idea.
|
|
|
Post by DKL - darkknightslover on Jun 12, 2013 8:02:23 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
|
|
|
Post by jan on Jun 12, 2013 8:09:53 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
|
|