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Post by vagueandrandom on Jun 15, 2016 12:42:29 GMT
I'm not going to go into great detail about my experience with my GP as I've written
a lot about it on the general board. .but he refused to refer me to the ADHD Service
because the consultant psych said that my ADHD dx is inconclusive. . .
anyway . .complaints in progress. .
I saw my Remploy advisor this morning and burst into tears when he asked me how I was. .
so we just had a chat about my problems, which was nice because he understands ADHD and
he he also suffers from depression. . .
BUT . . he then questioned my reasons for coming there. .am I ready for work? Or am I just coming
in to have a chat? . . their job is to help me into employment and he feels that I'm too wrapped up
in my problems to be able to take on a job. . .
So. . it set me off crying again because I feel like I'm being rejected by one of the few people who understands me. .
and I really want to get a job, so that these things won't take over my life . .
I really have to convince them now. . or I'll lose the only support that I have.
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Post by easilydistracted on Jun 15, 2016 12:49:28 GMT
That's a no brainer, you need a job to give your head something to chew on itstead of chewing on itself.
As your advisor also suffers depression i would have thought he would understand the spiral, the rabbit hole :-(
You need something to go right for you and to give you something external to focus on.
Sounds to me like a job is exactly what you need and now
Now, thinking laterally, does this mean you have too many problems even for Remploy? This would suggest you are severely disabled by your current condition and in that case ypur GP needs to sign you off OR if your GP won't then you are fit for work!
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Post by contrarymary on Jun 15, 2016 21:45:15 GMT
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Post by smogz101 on Jun 20, 2016 20:20:58 GMT
whaaaaat! Sorry I've just seen your post about the psych vagueandrandom How is 3x5mg I/R going to be any better than 36mg of concerta? For one, it's half the dose?! Have you ever gone higher than 36mg of MPH? Because 60mg was perfect for me, less overwhelmed by stuff meaning I was generally much happier, i too am back on 30/40mg a day and it makes me tired. It's so annoying that they won't prescribe you any higher, whats the point in prescribing it in the first place if they won't titrate you to your right dosage? Is there anyone you can write too, or go to for a second opinion?
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Post by smogz101 on Jun 20, 2016 20:34:45 GMT
anddddd... how can the ADHD diagnosis be inconclusive? Would they even be allowed to prescribe medication for something that wasnt properly diagnosed? I just don't get it, you have ADHD, which your on meds for, yet they won't refer you to the right people to monitor them properly, let alone titrate them.
I know you can't usually self-refer, but it might be worth giving the ADHD team a ring/write a letter to explain your situation and see if anything can be done by them directly.
I had a nightmare recently with my GP refusing to refer me to cardiology even after the psych made it clear how important it was. After 3 months it ended up being sent through as an urgent referral - which the doctor put on the notes 'i do not believe this to be urgent....' and then didn't even make the referral at all. It took the psych to practically drop a bombshell on the surgery before they referred me. I then found out from someone else it costs the surgery a few 100 quid to refer, which is why they were being such awkward bastards about it.
So if all the above fails, change surgeries and see a completely new GP. You need someone who knows what they're doing fighting your corner. That PALS service are meant to be good too, might b worth contacting them as well!
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Post by vagueandrandom on Jun 20, 2016 20:39:32 GMT
Hi smogz101 I was on 54mg of concerta for a while, but it made me really tired and the late afternoon crash was awful. .it was the GP who upped it from 36mg. . before I got to see the non-specialist consultant. I was hoping he'd be able to complete titration, or maybe add in some IR mph to combat the crash . . . I haven't actually seen the consultant psych's report. .the GP just read from it . . I've requested a copy from his secretary, but haven't received it yet. I'm making a complaint against him with the help of an advocacy service and they think that I have a good case, but I need to know what he said in in order to raise a complaint. I'm also writing letters, but need to have the facts first. You're right, the 3 X 5mg IR mph isn't worth bothering with. .
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Post by vagueandrandom on Jun 20, 2016 20:45:04 GMT
My ADHD dx states: "conclusion: ADHD, hyperkinetic subtype"
I can't see how that is inconclusive. . there are some comments about how I have other difficulties
and that it's not a case of uncomplicated ADHD. . .BUT IT IS ADHD!
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Post by smogz101 on Jun 25, 2016 20:44:17 GMT
Sounds like your going about it the right way, getting the facts first etc. You must be so frustrated! I hope it isn't too long a process for you to get it sorted
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Post by vagueandrandom on Jun 26, 2016 9:58:01 GMT
Update: I called the CP's secretary again to ask about the report and she said that she
posted it a couple of days ago, which means that he has no objection to me having it. . .
if it doesn't appear in the post in the next couple of days the secretary says that she'll
send another copy. . .
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Post by easilydistracted on Jun 26, 2016 13:49:41 GMT
Woot!
That's a bit of a result! A battle that doesn't need fought, may the next one be so easy too!
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Post by vagueandrandom on Jul 9, 2016 17:50:44 GMT
Hello I haven't updated this diary for a while, but was reminded by Facebook that it's a year today that I was diagnosed. . (yes, I announced it to my FB friends) so it's also the anniversary of this diary too! So, what's happened in a year? . . .in my life, a lot. . throwing in my job and moving to a city where I know no-one. . making lots of lovely new online friends on this forum, meeting a few of them and falling out with a couple of them. . falling out with my oldest RL friend after nearly 30 years. . In regard to my ADHD, I've learned a lot, got very angry and upset with the stigma and ignorance I've encountered from family, friends and medical professionals. . . and as far as treatment goes, I'm pretty much at the same point I was a year ago. . and possibly a bit worse off. . . So the GP has requested funding from the CCG to be referred to an ADHD specialist after I confronted him with the NICE guidelines regarding medication: that it should be prescribed, monitored and titrated by a specialist with a review at least annually. . . I saw the psych again yesterday, which wasn't very productive because for the past 3 days my brain has decided that it needs to sleep until about 3pm and not when I want it to. . . which means that I'm finding it hard to keep any thought in my head for more than a moment and even trying to string a few words together is an enormous effort. . so I'm a zombie. . .awake and functioning (just), but lost in a quiet dream until late afternoon. . and everything outside is so loud and so bright, so intrusive that I can't think. . . anyway, I struggled to say this to the psych and he upped my meds to 10mg IR mph 3 times a day. . I didn't tell him that I've not been taking the 5mg every day. . .I don't see the point at such a low dose. . but have decided that I should try again. . . The appointment lasted 10 minutes. .he's still referring to my 'problems in concentration'. . I had no energy to argue. . I told him that my GP is referring me to a specialist. . .no reaction. . . I should maybe write another letter outlining why I am seeking specialist help and why I don't think that he has the competence to treat me, either pharmacutically, or with therapy . . it's funny, I was looking on the website of my pharmacy for opening times, and there's a link to the psych's own MH Trust's website, which has some reasonably good information about ADHD. . it's more specifically about medication. . I may have to point him there. . That's it. . Happy Birthday Diary
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Post by smogz101 on Jul 9, 2016 18:48:35 GMT
Happy Birthday vagueandrandom diary Sounds like that's a bit of progress at least! 30mg is better than 15 though, so is he titrating you up now then? or is his plan to stay at 30? Hopefully won't be too long a wait to see the specialist. Im still stuck at 40mg for the time being - thanks to a very stubborn GP refusing to follow my psychs instructions to refer me to the cardiologist. Waiting game!
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Post by shiningbright on Jul 9, 2016 23:26:59 GMT
Holding for the best for you :-)
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Post by vagueandrandom on Jul 26, 2016 16:26:35 GMT
I haven't written here for a while . . .but this is recording my ADHD and I feel that I should update. .
So, I spent 2 days working on a letter to the psych. .and I really don't know if I should send it. .
I don't know if it's the meds, but I'm really having problems getting my brain to engage recently.
I've always had it for the odd day, but it's nearly every day at the moment. . I just can't seem to
switch on . . and I'm normally really hyper and alive. . .
I'm getting nothing of importance done. .and I have so many things that I should be doing. .
I don't know what to do about the meds . .I'm very tempted to stop, but am trying to comply
because I've asked for referral to the ADHD specialist using the NICE guidelines regarding
prescribing and having an annual review. . .In his latest letter to my GP the psych says that
I was previously on a 'high dose' of concerta which concerns me because it was only 36mg.
So, I have an empty head, my usually acute senses are even more keen and disturbing,
I crash in the evening and wake up at night. . .oh, and every so often for no particular reason,
I burst into tears . . .
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Post by shiningbright on Jul 26, 2016 22:25:08 GMT
I wish I had something useful or comforting to say sweet...
Maybe a little story might prove cheering- sorry if not.
Do you know why I call shiningbright on here? How could you. Well I'm gonna tell you. If you look outside one night, hopefully a night free from clouds, you'll see countless of billion stars in the sky. Well in my head, I often feel like I'm on a boat in a vast ocean and the people in my life are my stars. They help me to navigate my way though each day, and I know that when I ho t a storm the star will still be there. I'm not alone. They're a comfort to me on my dark days when I'mlost. They dnot know it as I live inside my head but they're in my head with me more a part of my life and my health then they could possibly realise. Each one shines brightly. And I hope that I shine brightly in they're sky too.
The cheerful part - I've never met you or anyone on this site. But you've got a star in my head also, part of the aadd constalation lol :-) and you've got stars around you also so you'll find your way though your storm too and you'll find your balance again at some Point.
Maybe meds will help, maybe not, you're brave to try them :-) and you're doing well. At the end of the day, trust your gut
You're in my prayers and I hope I was able to share some cheer :-)
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Post by vagueandrandom on Jul 27, 2016 17:02:22 GMT
Update: got a very vague letter from the CCG . . .it seems that my GP didn't ask for
out of area funding, even though I was very specific about where I wanted to be referred
to and why . . .they suggest that I can be treated locally by MH services, which is where
I'm already seeing the psych who doesn't think that treating my ADHD would be beneficial.
If I had been dx longer ago and had completed titration, or if the local psych understood
ADHD better, then I wouldn't be so insistent on seeing a specialist.
I just feel that nobody's taking me seriously.
Back to the GP then.
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Post by shiningbright on Jul 27, 2016 19:45:11 GMT
Surely there is some organisational body you can talk to to get help with this?
Mind, C.A.B., NICE... Sure start can also be quite helpful for knowing ways around problems crated by establishments.
Maybe write to your MP or threaten/memtion to your GP (who local NHS somebody) with media coverage and career scandal?
There must be a way for you to get the help you need, that's the whole point of our systems in the UK, it's supposed to support and help those as needs, it's just designed that those as needs have to fight for their needs. But the help is there...
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Post by vagueandrandom on Jul 28, 2016 9:29:09 GMT
Thanks shiningbright . . .I've written a letter to my GP and will make an appointment to see him. I've still got an NHS complaint with an advocacy service, who have been great. . they're helping me through it, but until I've exhausted all avenues and can find someone actually at fault, I can't really go through with an official complaint. I have letters ready to go for the MP and the health correspondent of the local paper has just started following me on Twitter. .
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Post by shiningbright on Jul 28, 2016 9:36:06 GMT
I have letters ready to go for the MP and the health correspondent of the local paper has just started following me on Twitter. . You go @vaugeandrandom :-) It's slow work, but it is steps in the right direction. You're in my prayers
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Post by vagueandrandom on Aug 7, 2016 17:50:06 GMT
The latest chapter in my saga. .
I saw the psychiatrist again on Friday. . . I'd spent most of the past 2 weeks
writing and rewriting a letter to him and changing my ideas about what to say
and how to approach him. . . I told him about the side-effects and how I feel like
the meds are making me worse and he said that I've only been on that dose for a
month, so he thinks that I should give it a bit longer. . .he's going to arrange shared
care with my GP and recommend that I get psychotherapy. . .
That's it! No more titration, no trying something else. . .parked on 10mg X 3 mph IR
for the foreseeable future. . .my appointment with the GP is still 2 weeks away. .
even if I get CCG funding to a specialist, I'll be on another waiting list. .
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Post by contrarymary on Aug 13, 2016 16:04:08 GMT
that is pretty awful, and in clear breach of NICE prescribing guidelines i hopy you are coping in the wait time xx
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Post by vagueandrandom on Aug 19, 2016 15:07:29 GMT
I've just got a copy of the letter sent to my GP from the psych. . .
He says "She denied having any significant side effects due to the medication."
I told him that my concentration has been worse due to my already acute sensory
awareness being even more so causing me to be more distracted, headaches,
crashes, and suddenly bursting into tears. . all of which are common side effects
listed in the information leaflet that comes with the Ritalin.
He interprets this as depression, even though I told him that the tears must be
related to meds, as they've come out of the blue on days when I've been perfectly
fine . .he referred to depression and low mood 5 times in a short 3 paragraph letter.
Oh well. . .not seeing him again anyway. .
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Post by contrarymary on Aug 21, 2016 15:24:18 GMT
if all you know is horses, i guess you see them everywhere. even in the midst of a herd of zebras. xxx
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Post by vagueandrandom on Aug 25, 2016 19:11:10 GMT
It just goes on and on. . . .
Saw the GP. . he doesn't know what more he can say to the CCG to persuade them to fund out of area referral to
continue my treatment. . he suggested that I might write something, but I'm sick and tired of fighting, so I'm going
ahead with my complaint to the CCG to get them to explain their decision and why they think that local MH services are adequate.
My GP is in a similar place as me. . he ranted on about the stupidity of the new NHS Commissioning and how it's privatisation
by the back door. . .I asked him if he would be willing to agree to shared care if I decided to go private and he was
more than happy to do so. . .soooooooo. . . .I have some thinking to do. . .do I go private against all my beliefs?
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Post by vagueandrandom on Aug 26, 2016 19:59:10 GMT
I'm not giving up gc7 . . I just need to get this sorted out so I can get on with my life. Like you, the battles with the system have taken over my life and I don't need it. . It doesn't help that I didn't get shortlisted for another job this week. . .applications take so long because my focus is on the fight. .
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Post by vagueandrandom on Aug 31, 2016 11:04:18 GMT
OK . . I've done it! . . I've booked a private appointment. .
I'll have to be assessed again. .
but I'm going to stop the meds until I get seen in 2 weeks. .
I can't be doing with the side-effects and I might be able to try something else.
I'm relieved, but nervous. .ha ha! The self-doubt returns when confronted by the
prospect of another assessment. . .what if they tell me that I don't have ADHD?
Will I answer questions differently now that I've made myself an expert?
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Post by smogz101 on Aug 31, 2016 18:33:52 GMT
How come you have to be assessed again? can you not see a private doc purely for treatment, I'm not sure how it works? Hope things get sorted for you soon!
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Post by vagueandrandom on Aug 31, 2016 23:03:28 GMT
smogz101 It's because I'm a new patient and he wants to see what he's dealing with. . fair enough. . I've had to give my whole MH history every time I've seen someone new, so it's fine. . I won't be able to provide any evidence from my mum this time though. . she's still in denial, I don't speak to my sister and don't know anyone else who knows me well.
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Post by smogz101 on Sept 1, 2016 16:03:40 GMT
ah thats a tough one :/ but the fact you were diagnosed taking into account that info last time, should count for something! I really hope this psych knows his stuff, because you've been messed about so much and passed from pillar to post!
Is the plan that you pay for the titration appointments and then once settled on the right meds do shared care? or will they share the care whilst your titrating so you dont have to pay for private prescriptions?
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Post by vagueandrandom on Sept 1, 2016 16:28:35 GMT
That's a good question smogz101 . .I'll have to ask. . I imagine I'll have to pay for private prescriptions during titration. I've heard good things about the psych, he runs an NHS specialist ADHD service, which gives me confidence. I really disapprove of private healthcare, but can't wait for however long for my complaint to the CCG to go through, then if I get funding, I'll be on the waiting list for at least 9 months . .
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