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Post by Kathymel on Jan 18, 2014 10:04:15 GMT
That's brilliant, Fuzzy. I can't wait to read it! x
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Post by fuzzywuzzy on Jan 18, 2014 12:22:09 GMT
I'm not very 'with it' this morning...combination of lack of sleep, overwhelmed by chasing appointments, stuff to do with sister and dad, etc, but just wanted to say a big, heartfelt, thank you to jjKathymelcontrarymarypurplepowerthere is nothing like you truly wonderful human beings to put a smile on your face and give you a warm (fuzzy) feeling inside... I hope , whenever required, I am able to do the same in return... lots of love, x x x
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Post by Kathymel on Jan 18, 2014 13:02:52 GMT
Thank you, Fuzzy. Hope you have a relaxing weekend, without too much family stress. Just going to retag JJ cos I finally learned yesterday that you have to write @ + 280joanne to tag 'our' JJ. There's another jj on here who may one day come back and find she has hundreds of tags.
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Post by fuzzywuzzy on Jan 18, 2014 17:19:41 GMT
Just going to retag JJ cos I finally learned yesterday that you have to write @ + 280joanne to tag 'our' JJ. There's another jj on here who may one day come back and find she has hundreds of tags. Oh! Thank you..... There's only one JJ!
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Post by fuzzywuzzy on Jan 20, 2014 19:07:24 GMT
The Sunday Times Magazine Article ---------------------------------------- Ok...I STILL don't have a final release date but it's coming out for definite in 2-3 weeks It is 6 pages long and includes 3 families, including me and gorgeous naughty daught....oh my God, with photos too!!! ( I did know this, of course, because cameraman came to our house, but now I'M PANICKING.!!! ) and 3 'experts'.... Janet Wozniak in the U.S. - 'discovered' childhood bipolar....knows what she's talking about...and replied to my email Stuart Kaplan in the U.S. - wrote recent book called "your child does not have bipolar disorder"....idiot...Daily Mail loves him! Anthony James in the UK - based at Oxford University, where I am a guinea pig.....if I get no joy for naughty daught at Maudsley, I will be contacting him.....he is all about the brain scans! Need to ask a question.....I want it to say 'fuzzywuzzy' is writing a book.....if you would like to contact her, her email address is......................but the journalist, who is lovely, says she is happy to mention the book, but they have never given out someone's email address, worried that they would be inundated by weirdos and association with the Sunday Times.....ANY IDEAS HOW I COULD GET ROUND THIS? I desperately want people to contact me..... other people in the same situation.......and, of course, enlightened psychiatrists
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Post by Kathymel on Jan 20, 2014 19:15:15 GMT
Most writers are contacted via their publishers. Do you have one yet?
Alternatively, newspapers often do give out website details or Facebook addresses. Could you knock up a quick FB page for the book?
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Post by fuzzywuzzy on Jan 21, 2014 12:12:54 GMT
MAUDSLEY JUST RANG.....CANCELLATION JUST COME UP......MY 3RD APPOINTMENT FOR NEUROTESTING IS NOW BEING BROUGHT FORWARD........TO TUESDAY 18TH FEB!!!!
yippee.....yippee......yippee.....hallelujah......hurrah......PANIC!!!
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Post by contrarymary on Jan 21, 2014 18:33:05 GMT
i suspect that neuropsych testing is likely to be a Doddle compared to everything you have been through to get to this point, so i wouldn't worry too much fuzzywuzzy . (i've had two lots previously so for once am speaking from experience) no preparation needed. just go along and play the games/do the tests that they give you to do.... they want you to be absolutely typical you and nothing but you, so try to remember to be yourself. that's all folks woop woop tho, hey - that'll be four buses coming along at once already... go you
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Post by fuzzywuzzy on Jan 21, 2014 18:38:21 GMT
AND.....AND.....AND..... I may have just done my first ever link..... Thank you so much for your advice and support contrarymary....much appreciated X
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Post by fuzzywuzzy on Feb 17, 2014 17:08:54 GMT
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Post by contrarymary on Feb 17, 2014 18:46:43 GMT
fingers crossed fuzzy tho it is, of course, a doddle compared to the rest of what you've got through to date. they are simply testing to see which bits of your brain work and in what pattern - this bit above average, this bit average (or this bit x percentile, this bit y percentile) - and the pattern will then be evaluated to see what information it gives them about your attention, focus, short-term memory etc etc. so your job is to be typical you. (i remember i was so totally distracted by many things that the tests took twice as long as usual- nobody saw that as clinically significant!) you'll be grand - dinna fash yersel (that's my irish & scots heritage creeping out )
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Post by fuzzywuzzy on Jul 2, 2014 19:10:10 GMT
I know this might sound a bit stupid but following my diagnosis....9th June..... I assumed that the GP would act on the Maudsley's letter of recommendations, so I just sat and waited Now, nearly 4 weeks down the line...I'm panicking...they have not phoned to arrange an appointment or anything else... I hope I'm not in for a medication battle a la petra....sympathies Petra x i have now booked an appointment with the GP, but it's not til 21 July.....have also begged my local psychiatrist's secretary for an urgent appointment with him, which she has very kindly done....for next week, 8th July I realise I haven't been pro-active (or indeed at all active : but these are, after all, test results....and the culmination of a year's worth of diagnostic investigation from start date of referral til now....I cannot believe that we are just left in limbo like that.....I know, I should know, having read all of our battles on here, but it's just not right.....it's appalling treatment....and yet again, no parity with 'physical' ailments.....if they showed positive test results, you most certainly are contacted and called in
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Post by contrarymary on Jul 2, 2014 21:27:19 GMT
well done you for your proactivity... great to have got appts sorted, and glad you are seeing your local psych so soon. and if you have a copy of a letter you can take along, that would be helpful, but you've prob thought of that already . in my experience fuzzywuzzy when you have seen a consultant and they write to your GP, unless it's life & death your GP will wait for you to book an appt and come and see them, and will then discuss the results/clinic letter/latest treatment etc. i've never been able to work out whether that's because we take responsibility for our own health in partnership with our GPs so the least we can do is book an appt, or whether it's because they are just plumb too busy, or something else. but it is how it usually works.
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Post by petra on Jul 3, 2014 0:29:23 GMT
.... contrarymary is right... If your specialist has written and requested you be prescribed a specific dose of a specific medicine...it could be as simple as ringing your GP surgery and asking if the prescription has been done and is ready to collect. You have had more battles than anyone should face in a lifetime...I sincerely hope this isn't going to be another. But even if it is, it should be easier where you are to find a cooperative GP and you'll have backup AADDUK style!! contrarymary - think you need to work on your editing skills!! (I got well confused with all the buses!)
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Post by petra on Jul 3, 2014 0:43:48 GMT
Just going to retag JJ cos I finally learned yesterday that you have to write @ + 280joanne to tag 'our' JJ. This just really isn't helpful....how complicated is that??...some people hey!! Some of us have got adhd around here...( )
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Post by petra on Jul 3, 2014 12:40:56 GMT
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Post by contrarymary on Jul 3, 2014 15:16:34 GMT
it was a bit out there, i must admit. i knew what i meant, just couldn't say it in words
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Post by petra on Jul 3, 2014 17:41:42 GMT
I knew what you meant in the end...after reading, reading again, meditating and re-reading
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Post by petra on Jul 3, 2014 17:45:22 GMT
Uh-oh - fuzzywuzzy..I seem to be derailing your thread There should be the facility to ban certain people from threads I think...but there isn't, so....
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Post by JJ on Aug 3, 2014 1:08:52 GMT
I know this might sound a bit stupid but following my diagnosis....9th June..... I assumed that the GP would act on the Maudsley's letter of recommendations, so I just sat and waited Now, nearly 4 weeks down the line...I'm panicking...they have not phoned to arrange an appointment or anything else... I hope I'm not in for a medication battle a la petra....sympathies Petra x i have now booked an appointment with the GP, but it's not til 21 July.....have also begged my local psychiatrist's secretary for an urgent appointment with him, which she has very kindly done....for next week, 8th July I realise I haven't been pro-active (or indeed at all active : but these are, after all, test results....and the culmination of a year's worth of diagnostic investigation from start date of referral til now....I cannot believe that we are just left in limbo like that.....I know, I should know, having read all of our battles on here, but it's just not right.....it's appalling treatment....and yet again, no parity with 'physical' ailments.....if they showed positive test results, you most certainly are contacted and called in What's happened here fuzzy? Have u got meds? Xx
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Post by fuzzywuzzy on Aug 3, 2014 13:31:15 GMT
What's happened here fuzzy? Have u got meds? Xx Lovely JJ...it always puts a smile on my face when I see your name on here.....(or Kathymel's) ......I know you've got a zillion and one things to do (including school battles)....and to catch up with since finally getting meds, but it's lovely when you pop in nonetheless....you are sorely missed... no, no meds just yet....just twiddling my thumbs waiting for the results back of the request from my new and wonderful GP to the Maudsley for further instruction on meds....and a place on their 3 day ADHD course.... confident it won't be too long now.....and striving ahead in life now anyways, simply with knowledge, insight and better self-esteem...or at least it finally feels like it now.....with the occasional blip..... Still fighting a few more battles, but now able to do them, as well as writing the book..... tried to to start up an ADHD Support Group too, but with not much success....did you?? anyways, really hoping all good with you x x x
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Post by contrarymary on Aug 3, 2014 17:24:57 GMT
Lovely JJ...it always puts a smile on my face when I see your name on here.....(or Kathymel's) ......I know you've got a zillion and one things to do (including school battles)....and to catch up with since finally getting meds, but it's lovely when you pop in nonetheless....you are sorely missed... anyways, really hoping all good with you x x x seconded xx
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Post by fuzzywuzzy on Dec 15, 2014 23:29:02 GMT
Hi everyone Was diagnosed in June..... By Maudsley..... been lots of to-ing and fro-ing between local psych, GP and Maudsley.....and lots of lost paperwork and 'mislaid case' etc Just received a phone call today from GP staff to say that my case for meds....and 3 day ADHD course at the Maudsley.....has been rejected by....the Maudsley??? Yet they were the ones who recommended it?!? So confused.....sorry, got so much going on with 10 year old daughter's education tribunal due in January, can anyone explain it to me, in a nutshell, without referring me to previous threads, which I will read up, when I'm a little less fuzzy
Thanks in advance x
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Post by JJ on Dec 16, 2014 1:22:02 GMT
I don't think this is as it sounds - and I think it's just a badly worded way of saying that the Maudsley don't fund treatment themselves and you need to look to your own CCG for funding.
Reason I'm saying this is that I received similar info about the 3 day course and, when I complained, I was told it was just a badly explained part of the normal procedure to get funding - and my GP would have to apply to an out of area treatment panel in my CCG for funding.
Maudsley don't fund you - they're paid to diagnose and recommend treatment. So they recommended me for the 3 day course. I went to my GP and said I wanted to go on it. He wrote to Maudsley to ask for me to go on it. They refused funding (which is standard), so my GP then had to apply to my CCG's out of area funding panel.
My GP should've done that in the first place I think, but didn't - I think because he didn't know, or maybe the Maudsley operates differently.
I know I've not explained it well - that's because it never quite made sense to me - and because I've still not heard back from my GP re applying to the other panel.
If I remember tomorrow, I'll dig out the response to my complaint which talks about this. I do seem to recall that they mentioned the Maudsley hadn't explained it properly to me and that they would revise their wording as a result of it being highlighted. I'm not hugely surprised that nothing has actually been done of course. ( I think you've got my mobile no - text me to remind me if I don't get back - or send me a pm on here - they come through as alerts on my phone.)
As far as meds are concerned, Maudsley has an arrangement with a GP in Kent and I have to see her. There's never been a funding issue with those (not one that I was aware of). Maybe this GP did all that side of it automatically....
If there's no equivalent GP in your area, that could be the problem - the Maudsley don't usually prescribe anyway, so would refuse funding automatically and your GP needs to organise this for you from your CCG.
This is all speculation on my part - and I could be wrong, but it definitely rings the same bells as my own experience.
I suggest you call Maudsley and speak to Gary in admin for clarification - also ask if they have an arrangement with a GP to prescribe in your area. I know Kent isn't unique because Gary told me there were others. You should also speak to your GP and ask them what they're going to do. I'll send you my letter as well.
This is a ridiculous hoopla for you.... Really feel for you xx
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Post by contrarymary on Dec 16, 2014 7:56:28 GMT
Hi everyone hello fuzzywuzzy lovely to hear from you So confused.....sorry, got so much going on with 10 year old daughter's education tribunal due in January, can anyone explain it to me, in a nutshell, without referring me to previous threads, which I will read up, when I'm a little less fuzzy
Nothing helpful to say, and suspect that the wonderful jj has hit the nail on the head with regards to the Maudsley and funding issues. (i'm still on the Who's Funding You? square in the assessment quadrantof the game) just wanted to say Good Luck with the tribunal prep.... it's really hard when swamped with these Huge Complex Legal Things which are being overwhelming roadblocks in Life. but if past performance were an indication of future outcome, i would imagine you are doing brilliantly. and this too shall pass. keep on doing what you are doing, it's just right. xx
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Post by JJ not signed in on Dec 17, 2014 11:29:24 GMT
Hi fuzzywuzzyJust quickly, I found my letter and what I said about me was correct - it was just standard to refuse and my own GP has to apply to the 'Out of Area Treatment Panel' because it's not something my CCG funds as a matter of course. Really hope you're doing ok xxx
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Post by fuzzywuzzy on Dec 17, 2014 11:39:12 GMT
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Post by fuzzywuzzy on Feb 5, 2015 22:03:00 GMT
Ok....so reeeeelly brief update.... Maudsley recommended...... 1. CBT... I'm about to start that, but only locally....and once I get passed the stupid assessor/tea leaf expert 2. Their 3 day course....I'm still battling for that....and won't be eligible for it until I've completed 1. above... 3. Meds....which have....holds breath....been signed off ....just awaiting results of blood tests and ECG
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Post by JJ on Feb 5, 2015 23:08:28 GMT
Still waiting for my funding for the 3 day Maudsley course. Nasty mental-health denier GP had a vague burning smell about her when she realised, following my complaint to the CCG, that she had no choice other than to make the formal request to the Out of Area Treatments Panel. That was apparently sent on 12 Jan, panel meetings happen monthly, so I've got a phone call to the surgery for 12 Feb on my Wunderlist reminder
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Post by fuzzywuzzy on Feb 6, 2015 11:19:28 GMT
Still waiting for my funding for the 3 day Maudsley course. Nasty mental-health denier GP had a vague burning smell about her when she realised, following my complaint to the CCG, that she had no choice other than to make the formal request to the Out of Area Treatments Panel. That was apparently sent on 12 Jan, panel meetings happen monthly, so I've got a phone call to the surgery for 12 Feb on my Wunderlist reminder Woo hoo!!! Well done you! That's next on my list....comrade
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