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Post by shiveringsky on Oct 21, 2014 10:37:48 GMT
An update on my journey. The sort of sissyphusian, rock rolling, falling backwards down an incline adventure that is the battle for care and treatment. I feel at this point that a special mention to the GPs at the clinic which I won't name is meritted. I went in twice in the last week for various other ailments and asked if there was any progress on my referral. The first woman I saw helpfully crossly advised me that a letter had been sent in January. She even rolled her eyes and sighed. So I played monkey and mimicked that response "Ah yes... that bit is done. I believe another was written to the CCG back in August?" She reluctantly looked back at her screen and agreed that yes, there was an update since January (which surely includes the Maudsley's recommendation for treatment too.) When further prodded - gently, like talking to an obstreperous child - she said yes, the referral had gone through. But bless, not being so reliable I didnt feel comforted.
A few days later I had to go back due to an ear infection.; This time I noted with some excitement that the doctor I had been assigned was none other than name number one on the clinic's board. Cue excitement through the pain as I think 'At last! Surely the man with his name above the door has the answers I seek!' And although he was as bland as low-fat cheddar, when he told me that I had been referred back to the Maudlsey I finally felt some sense of relief.
Yesterday I received a letter from the CCG stating that "the panel explored the positive outcomes for Ms *shiveringsky* in engaging with specialist services available to her her in her locality at this point in time. The panel therefore recommended referral to psychological therapy services from her local mental health services at this time." Now I can forgive them their repetition because surely had I gotten the answer I was looking for I wouldn't even notice what is now irritating my eyes on every scan over this hope killer of a piece of paper. There are no resources in my local area. This point has been told to me countless times. All there is is MIND. Now dont get me wrong, MIND do a great job in a lot of areas, but to my knowledge AADHD support is not one. At least not in mine. Ive researched and they offer nothing by way of this. They don't even offer meds in area for adults. And I am starting to get the distinct impression, considering I had to recite NICE guidelines to even get my original referral and really, really work for it, that being in a 'true blue Borough' the attitudes towards ADD/ADHD in general fall in line with the school of it being an invention of the lazy and slack.
Anyway, to end with a punch. The world fell out beneath me. Last night I couldnt sleep with the rage which kept welling up when my mind when it turned away from the calm I desperately tried to focus on and couldnt. No sooner would I soothe it back and finally begin to relax it niggled back in and became forefront. Admittedly, part of this was the obsession with finding the perfect medical metaphor which I might use to explain to them when I contact to discuss this decision. I tossed and turned and at one point on the brink of exhaustion finally fell asleep. Ahhh bliss... broken by the ikea bed slats beneath my mattress caving in and everything beneath me giving way. What a scream.
For the TLDR crowd.
My local GPs are more apathetic than...blah. Don't know their arse from their elbows. CCG recommending services which dont exist. Bed fell apart. And I still cant find the perfect metaphor.
(And honestly... Im not usually this negative. Sorry.)
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Post by JJ on Oct 21, 2014 18:03:22 GMT
I'm not clear - do you want meds or CBT or both?
You come from Dartford don't you?
I'm from East Kent - which is a different CCG to you, but we're part of the same Mental Heath Trust - KMPT (Kent and Medway NHS and Social Care Partnership Trust)
So the Maudsley has the adult adhd contract for KMPT.
You get diagnosed by them and they recommend treatment, but they don't prescribe. However, they have an arrangement with a GP in Kent and she prescribes for everyone who can't get meds from their GP (which is practically everyone as far as I can gather).
They send her your referral letter by default.
She's Dr Chopra and she's in Boughton. She prescribes for people as far as Sevenoaks to Folkestone (those are the 2 furthest apart I've heard her mention).
So I have my own GP locally as normal - who refuses to see me for adhd and doesn't believe in mental health conditions full stop (unless it's postnatal or if someone's died - cos then it's a 'proper' reason of course)
And once every couple of months I go and see Dr Chopra who prescribes me methylphenidate.
Assuming you want to try meds, I suggest you call the Maudsley and tell them this and ask to have your referral letter sent to Dr Chopra - there's only her, they'll know who you mean. (And they have a similar arrangement with other gps in other areas as far as I can tell).
You'll probably get through to the rude, obnoxious, obstructive horrible woman who deals with adhd in Kent - can't remember her name, but I'm sure you know who I mean - if she doesn't do what you want in a couple of days, call PALS at the Maudsley and complain.
She was fobbing me off for weeks til I complained, then it got sorted out immediately. They can take your complaint over the phone, you don't have to write anything.
Soon as they've sent your letter to Dr Chopra, you call and make an appt to see her and you'll come away with a prescription. It might be worth calling her anyway (Tuesday 2pm-ish only) as she may have your letter anyway.
As far as CBT is concerned, I applied to my CCG for funding (for that and the 3 day course) and was told I should access services locally - even though there aren't any local services. The fact their answer is illogical doesn't seem to bother the CCGs. I'm in the middle of a complaint about this.
There is an NHS CBT guy in Canterbury you can see. It's not CBT for adhd (cos they don't do it), but I went to see him in desperation - and was accepted under the depression / anxiety tick boxes.
He was v keen to learn about adhd and asked his supervisor to send him on an adhd course (run by UKAAN). They refused, so he paid for it himself because, after learning about the idiosyncrasies of adhd from me and the figures I gave him on comorbidities and prevalence, he wants to specialise in it.
I finished seeing him a few weeks ago and he should have been on his training course by now. He extended the number of sessions for me, but wasn't allowed to extend them for the few weeks on top that I actually needed. I was just starting to make progress when it stopped. So he told me to wait a month then refer myself again and we'll carry on.
So I'm about to do that. His name is Adam and he's at the University of Kent Medical Centre. He's such a nice guy - he really feels like one of the good ones. You can refer yourself and I'd have thought they can't refuse you because you're from Dartford - especially that we're in the same mental health trust.
Just remember that they won't accept you for adhd, so you have to say you're depressed / anxiety. I would definitely mention that you have Adhd and this is the reason for your depression / anxiety - that bloody supervisor needs to know that we're out there and we need treatment.
Good luck - and you can pm me if you want x
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Post by shiveringsky on Oct 28, 2014 15:57:21 GMT
Hi JJ,
Thanks for that. I spoke to the woman whose name was on the letter from the CCG and she was actually a lot more sympathetic than I had been expecting. It seems so rare that people care. I don't know whether that is the sheer volume of distress they must bear witness to, or what. And ultimately when you need that bit of understanding I don't think it matters. But anyway, I explained to her that as far as my clinic were concerned there was nothing in the area. She explained that wasn't right and some other stuff that I cant actually remember.
I told her I wanted to try medication (and this is something I have been trying to contact the Maudsley about anyway). If they cant recommend me to the Maudsley it does hamper me anyway as I don't drive so actually being able to get anywhere deeper into Kent is a lot more problematic for me. This would make getting to Canterbury out of the question too. I can't ask my housemate to take time out of his job to drive me because he would need to take it as leave. It's not his responsibility and would be unfair to ask.
At the weekend I got a second letter, this one from the Adult/Transitional ADHD Satellite Service (they write out of Bethlem Royal Hospital. I have no idea where they are based, but I imagine someone here might?) They have refused me funding for any treatment too.
I made an appointment with my GP today on the advice of the lovely lady at the CCG. Joy of joys. My Doc has the look of someone for whom all the rest of us are mere idiots. Misinformed, unhealthy fools. She has the attitude of a haughty battleaxe. Needless to say, we're not especially close. I told her that I wanted to go on medication.
Doc:"We can't prescribe that sort of medication." Me: "Can't? Or won't? The CCG said there's no reason you can't." Doc: "I don't prescribe that sort of medication. I never have." Me "Why not? I have been diagnosed. I need help. You have two letters here denying me therapeutic treatment." Doc frowns. Not impressed. Tries to change subject by bringing up my records. "It says here you were due to go in in June..."
Cue the rigmarole. Turned out she hadn't read any of the communications since then. Even going so far as to pretend the letter from the Maudsley regarding my diagnosis had never been received. Luckily, I had come armed with my own copies of each letter which I helpfully supplied her with. What's interesting about this is that I have spoken with others in the surgery regarding that same letter. It's definitely on the system in my file. I've seen it with my own eyes.
Anyway, after a few more rounds of her skirting round the issue, with me challenging her. Please forgive sketchy details here, when things get fraught my memory is worse but basically she all but said it wasnt a real thing which is why she doesn't. And when I picked her up on that and pointed to the diagnosis letter which would prove that 'opinion' wrong she flared her nostrils, paused and then said "I don't because I never have and I dont know how to monitor it."~
So... she has agreed to write to the Maudsley and ask for advice on this and if satisfied she will begin prescribing. That's progress, right? I'm not allowing myself be optimistic on this as... well history makes me suspicious this is a stalling tactic on her behalf. But hopefully...
And I'm writing to them too, just in case she 'forgets'.
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Post by JJ on Oct 31, 2014 22:33:53 GMT
Yes that's progress I'd def chase yr GP after a bit though - just in case There's no admin in Sittingbourne btw - everything done by maudsley adhd-central admin Have you looked on your original diagnosis letter from maudsley? On mine (overleaf of first page) it says the meds they recommend, dosage, checks etc - might be useful to have that to hand / in mind for next discussion with GP if needed. Fingers crossed for you xx
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Post by shiveringsky on Nov 2, 2014 21:12:35 GMT
Ah, I see. That makes sense.
There's nothing on my letter about meds as I in my infinite wisdom at the time of diagnosis was very adamant I did not want them. At all. Ever. But the doc said if I changed my mind I could call him. I have tried to but havent managed to get through when he is in. Unable to sustain that level of effort it's been about 5 weeks since I last tried. At that stage he was on study leave and noone would/could tell me when he might be back.
I'll send this letter and then try calling again if I don;t hear anything. I wrote the letter on Wednesday but somehow it magically hasn't left my bag yet...and then on Friday I tore the envelope open thinking it was post for my work.... :/ ripped the stamp in the process. I win all the smart points.
Thank you for the luck! x
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Post by shiveringsky on Nov 4, 2014 13:01:48 GMT
Wooo. Just got off the phone to Doctor Choc (as he is henceforth known) after an epic 3 months trying to get a hold. He is going to see what he can do regarding the above. It's the little steps, you know? And knowing someone is actually listening.
Also, a brief study of my notebook scribbles for this call is a whole A5 sheet covered in squiggly arrows curling round each other. I may name it the process of getting help.
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Post by shiveringsky on Dec 1, 2014 1:04:08 GMT
Doc Choc was as good as his word and the letter advising my GP arrived about 2 weeks ago. The first thing I did when it arrived was schedule my next rendezvous with Icky Yahoo (GP).
Well that's what I should have done. But I put it off.
About a week ago I received a short letter from her saying I need to make an appointment with her. Which I did...
...not do.
Hmmm...
I dont know. This is the big thing. I cant count anymore the things Ive flaked on. Minor appointments for minor surgery. Things which I know cost the NHS money as the appointment has been booked and I just... forget. Or put it off and cant make myself pick up the phone (actually I did ring on at least one occasion but got put off by brisk responses from a no doubt overworked receptionist.) So I am trying to pin down why exactly, having come this far I didnt just race down and wave the letter at her the second it arrived. I can only put it down to fear.
I'm scared. Plain and simple. I am scared of her reading my blood pressure and making judgements. As far as I know there's nowt wrong, but I am overweight and sometimes I breathe weird (I think this is anxiety.) I guess this comes from her being a bit of a hard ass Lassie and having turned me away in previous requests for health help by her (a referal for cheap gym membership to help me get off my arse and sort the physical out too which was met with scorn and the snooty reply "Go outside and walk." All well and good but sometimes the world overwhelms and scares me too much to do something so simple.)
Have I mentioned lately how much I hate the postcode lottery? My cousin back home in Ireland has just qualified as a GP. And I dont think he'll be a PI about it. He has compassion. Anyway, once more I digress.
I am scared about not being able to have a drink. Scared of unknown futures.
I am scared of being reliant on a chemical. Which is ridiculous given how much I have self medicated in my life.
I am scared of giving her a chance to look down on me and make me feel like absolute crap just to fuel her own anti-MH agenda*.
Isnt it funny? I dont feel like the person who strutted in and told her to adapt and help me out because that was her damned job. I feel like a child. Alone and weak.
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Post by shiveringsky on Dec 1, 2014 1:17:38 GMT
*I have no proof of this. That's just the impression I get.
Perhaps it's only me she disdains.
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Post by contrarymary on Dec 1, 2014 10:38:32 GMT
massive progress shiveringsky - well done you is there only one GP? if so i guess it's a question of biting the bullet. it's a means to an end, and she only has the power over you that you give her. otherwise it's a simple transaction - she doctor, you patient, in partership to enable you to better health. you do your bit, she does hers, your life improves. maybe you can remove the emotion from the situation if you imagine you were going along with your best friend/sister/cousin, and what you would do/say? Remember, you have done brilliantly to get to this phase and have the anti-climax of the last little bit to get through. no wonder it's a bit overwhelming. but you have done this for you and it's your life which will get better. worries about the medication is a whole different thing, maybe it helps to see it can be broken down into a series of choices: * once you get the prescription you have the choice whether to fill it * once you fill it you have the choice whether to take it * once you take it you have the choice to stop it etc as you know, small steps achieve big results, but we can only take one step at a time, not do the whole journey. and you get to choose when you take the first step of ringing to book the appointment.... good luck
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Post by Deleted on Dec 1, 2014 11:04:02 GMT
Well done for getting this far, shiveringsky. Have you made the appointment yet? If not, can you come back and post so we can help you get on with it. Of course you are scared, you've had a shit time and you've every reason to feel crap right now. But come on, we need you to make that call, get the appointment booked and the rest of the thinking can be done later. (FWIW, my own journey to diagnosis and treatment had different roadblocks, but I panicked at the last minute and sat on my prescription a week before I've properly started trying the pills. My own feeling is that the whole process of diagnosis and tentative first steps to treatment is fraught with anxiety in itself. The fight we have to go through to get there just tips us too far, sadly. But we are resilient, we can make it. We must make it! Come on, we are here with you. )
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Post by shiveringsky on Dec 2, 2014 11:40:22 GMT
Thanks lovelies. I've made the appointment today. It's two weeks away. The woman at reception said Icky is on leave next week. I cant say I feel any more confident about the whole thing than before, but I don't know how much of that is related to just feeling generally very low right now. Not certain where the start and end is. What is symptom and what is root, you know? Getting up for work is proving very difficult lately and my resting bitchface comes with added grump. I started chain smoking last night and I hate tobacco. So ridiculous.
It really does help, you know? The support round here. I couldnt have come this far without ye lot.
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Post by Deleted on Dec 3, 2014 9:13:10 GMT
Well done shiveringsky! May I make another suggestion - one that I wish I had thought of myself roundabout a fortnight before I started taking medication.... Look after yourself and do the best you can to improve your overall well-being before the next phase of assesmsent/treatment starts. Go back to basics and keep an eye on eating healthily, getting some fresh air every day and getting rest and sleep when you need it. I'm afraid I ran myself to the ground right up to the point of my diagnosis and as a consequence I sat crying for days last week, unable to start taking the damn pills out of fear, and I still don't know which way is up or how I would know if the meds are working because I have been in such a damn mess from all the fighting with my health board to get to this point. Take really good care of yourself, whatever that means for you. Give yourself the nurturing that you wish you could get from your GP and then, by the time that appointment comes around you will be in a better place to deal with whatever happens. xxx
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Post by stellaxadella on Dec 9, 2014 19:06:42 GMT
Hiya shiveringsky! Recently joined this forum and stumbled across your post as it was one of the more recent ones. I was diagnosed 4 years ago and tried a few different meds before I settled on one that worked for me. In regards to anxiety about taking/trying meds... I attended a ADHD seminar earlier this year with ADD/ADHD DR , Author and Sufferer - Dr. Ned Hallowell (fantastic man!) A few people also attending the seminar had been recently diagnosed but like you were anxious about taking the next step (meds) in their mangement of it. His advice was..- ADHD Meds only last 4-10 hours MAX, from one dosage you aren't going to experience any side effect that will last any longer than that time. If you don't like the way it makes you feel, you can decide to never take it again, but until you try it, you will never know. - On a personal note, since I started t aking my meds, my life has done a 360. Long gone is the overweight, depressed, jobless, low self esteemed broken woman I used to be! I am now a happy, healthy, employed (actually managed to keep this job for over a year now which is a record for me! wohoo!) outgoing, confident , motivated DEBT FREE woman. There have ofcourse been bumps along the way, and medication doesnt solve everything, but it helped me more than I could ever have imagine. TRY IT
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Post by shiveringsky on Dec 16, 2014 12:12:23 GMT
Prescription in hand as of 4 pm yesterday. Have yet to get it filled. Stunned by first human interaction with GP, which threw me off a little to be honest. I was trying to keep calm and focused but she fends off my efforts by just being helpful for a change. That felt very good.
I think I am going to hold off in taking them though. Christmas is nearly upon us and I need to travel back to Ireland which would get in the way of my weekly titration appointment. This also gives me a little breathing space. Time to get my head together before I begin.
Thanks everyone for your help and support. I know this post isnt very interesting but yeah... It'll do for now.
x
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Post by Deleted on Dec 16, 2014 15:34:18 GMT
I attended a ADHD seminar earlier this year with ADD/ADHD DR , Author and Sufferer - Dr. Ned Hallowell (fantastic man!) A few people also attending the seminar had been recently diagnosed but like you were anxious about taking the next step (meds) in their mangement of it. His advice was..- ADHD Meds only last 4-10 hours MAX, from one dosage you aren't going to experience any side effect that will last any longer than that time. If you don't like the way it makes you feel, you can decide to never take it again, but until you try it, you will never know. I was persuaded to seek treatment by the same clinician, though by his book, Delivered from Distraction. In that he recounts how someone asked him if taking the medication might change their entire personality, to which he replied drily something like: well, if it does, then you'll have your own personality right back again within around 4 hours.... I was exactly that person, and I wasted a week before taking the first pill in an anxiety that proved to be unfounded. shiveringsky, do whatever feels right for you with trying the pills but one word of warning: as these are controlled drugs, you may need to wait a day or so for them to be ordered in to your pharmacy, as they usually don't have a lot in stock. I had to trek round several pharmacies before I got even a half supply and a receipt to go back for the remainder, which added to the build-up of stress around taking them. For that reason, I would suggest you get the prescription filled at a local pharmacy as soon as you can, so that when you are ready to begin your trial, you will have them to hand. Otherwise, I just wanted to say, well done for making it this far and I hope you have a peaceful holiday that is better for getting over the prescription hurdle.
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Post by supine on Dec 16, 2014 16:15:25 GMT
I was warned that it could 'change' my personality - something which I had a hard time accepting so it didn't really bother me. I mean, it's not like my personality hasn't changed every few months over the last 40 years anyway (as a result of new information and new directions taken etc.) but that's more of a reaction to events and attitude than anything external per se. And congratulations shiveringsky on getting your meds. Titration is a funny old phase, and you are wise to think about starting to take them when you have a 'clear slate' so to speak. The least amount of changes in other areas will only help you identify anything that comes up as a result of the meds, although individual 'things' will pop up, it's only when you look back on your notes for the last two weeks or so does a pattern emerge that could be interpreted in terms of your medication. Anyway, good luck and I hope you enjoy your trip back to the Emerald Isle Have a (proper) Guinness on me!
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Post by contrarymary on Dec 16, 2014 21:17:28 GMT
well done shiveringsky really pleased for you hope you can have a bit of breathing space (insofar as christmas with family can ever be a breathing space!) and start gently in the new year
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Post by shiveringsky on Jan 14, 2015 15:15:24 GMT
Hell. I am in hell.
Or Catch 22. Maybe even Joseph Heller would struggle to write this farcical charade.
My doctor is useless. Incompetent. I don't feel like my health is remotely safe in her hands. Yet it was such a trial to get her to even agree to help (because helping may or may not be her job, I don't know anymore) that I am afraid of trying to change GP for someone else in the clinic. Also, my experience with others there for other issues has been only marginally better.
So basically, after venting spleen yesterday and deleting that thread this morning, the gist is thus:
I started taking Tranquilyn at 5mg just over a week ago. I was prescribed this just before Christmas but opted not to begin it over the festive period for various reasons. I made an appointment with my GP for yesterday so I could have my weekly check-up and begin titration upwards.
I arrived and she asked me what she was meant to do. Despite having clear instructions from the Maudsley about how to go about this situation. Then prescribed me another months worth of 5mg doses. I tried to explain to her the various ins and outs but no. Nothing. My blood pressure is high so she wanted me back in for bloods this morning. - which is fine and fair enough- but she gave me no incloination as to what would come next. Whether this was why she wasnt upping my dose or what. Last night I was livid. l couldnt sleep with how idiotic this whole thing is becoming. (I did teach myself a neat trick though for calming my brain in the process. Everytime I realised I had started fixating on it again I cut myself off by thinking "ZERO". It seems to work well as a cut off when my mind is running away with me.)
This morning I used the opportunity to take this up with her again. She brought out a letter that the Maudsley had sent on December 12th. I never received a copy of this so it was news to me. Now there is a silver lining in that they are happy to take control of the titration period as long as she will monitor my bloods/weight. But I have already begun on this road with her. My GP hasn't upped my dose as instructed and having spoken to the admin in the Maudsley today I am told I will be waiting till at least March before they can see me and at that I am at risk of being discharged because the doctor hasn't bloody written back to acknowledge the first letter anyway. They are sending her a reminder.
What the hell am I meant to do? The woman I spoke to, nice as she was, was not in a position to advise. Am I meant to keep taking these pointless 5mg doses until March? Do I come off it? Why they hell cant the right hand talk to the left hand here?
I feel like I've fallen down the rabbit hole.
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