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Post by vagueandrandom on Jun 10, 2016 12:42:14 GMT
I was dx last year, had a follow-up appointment and was left partially titrated on 36mg of concerta when I moved house.
At my first appointment with my new GP in January I asked to be referred to an ADHD specialist to continue my treatment.
I found out that I'd been referred to secondary MH service for 'persistent low mood' and told that there is not an ADHD
service in my area, but they'd get me an appointment with a consultant psychiatrist who prescribes ADHD meds. .
That was today. . and it's clear that the consultant doesn't know much about ADHD and wants to treat my depression
and emotional instability. . .I REALLY tried to express that I thought that my ADHD was at the root of my problems,
but he just kept referring to 'lack of concentration' and that medicating for that wouldn't be beneficial. .
Do I have a case to take to my GP to request an out of area referral to a specialist unit an hour away?
I don't need to be diagnosed, but need someone to understand the complexity of ADHD and it's comorbidities
and to get support and treatment specific to that.
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Post by sarahluigi on Jun 10, 2016 16:26:16 GMT
Can't really help, sorry, just wanted to say sorry that you're having such a hard time getting anywhere with this. It must be beyond infuriating and depressing. Sounds like you might need to press to see a specialist - you have a diagnosis of ADHD after all, you wouldn't be sent to a general surgeon or a heart specialist to discuss chemo meds for cancer, why should psychiatric stuff be treated differently?
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Post by hanonymouse on Jun 11, 2016 11:46:04 GMT
HI, This must be awful, I didn't realise that moving areas means that treatment for a diagnosed condition would be stopped completely. I'll have to bear that in mind if we ever decide to move. I had to say that this kind of treatment, in my opinion, is downright cruel! Imagine having a diagnosis for cancer and then moving house only to be told there are no cancer services in your area... disgusting. Please correct me if I'm wrong, but doesn't the "N" in NHS mean "National" ?? Maybe they should change it to "IWCBAHS" If We Can Be Ar$3d Health Service ? Re the depression, do you think you're in depression at present? As far as I understand, this can go hand in hand with ADHD anyway especially if you're going through something like this. I don't know much, but is it worth writing to you GP's practice manager and sending a copy to the local CCG to request an out of area referral as you're already diagnosed? You can find your local CCG here: www.england.nhs.uk/ccg-details/Maybe a copy to your local MP too and just hope they're not a Daily Mail reader believing it's a 'designer illness' as one person put it to me! good luck!!
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Post by vagueandrandom on Jun 11, 2016 12:17:25 GMT
Thanks hanonymouse we just cross-posted I intend to ask for out of area referral, but don't know how that will go down, or how long the wait will be. I have a long history of depression, but am not depressed at the moment (until yesterday. .I cried all day) and that's all he wanted to talk about. I feel that a lot of my depression is 'caused' or exacerbated by my, until recently, undiagnosed ADHD. . . I'm writing letters to specific MPs at the moment and am adapting one to be used as a template for others, which will be ready to post on here soon. I don't know how I would have coped yesterday without the support of my ADHD friends. . .so thank-you all <3
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Post by marionk on Jun 11, 2016 13:31:49 GMT
I was forgetting, in my last post about this, that you already have had a diagnosis. How they can now just ignore this is beyond me!
Ok, your GP(s) need to be ok with prescribing ADHD meds, so need to be confident with that diagnosis, but why on earth are they insisting on a second diagnosis?
I can see that it would be good to find a capable psychiatrist locally but couldn't your dx psych and the GP's do the shared care thingy in the meantime?
(ok, silly question, they obviously want a different psych to dx, though why is still beyond me.)
I'm wondering if the biggest problem is really your GP. A lot of people do have terrible problems getting GPs to prescribe ADHD meds.
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Post by hanonymouse on Jun 11, 2016 13:46:53 GMT
Personally, I wouldn't be overly concerned about how it goes down, you'r wanting treatment, not a friendship with your GP. Obviously it helps to keep a decent relationship with them, but not to the extent of suffering yourself because they don't want to spend their budget on treating your diagnosed condition.
As I found in my area when i got annoyed with unreasonable delays, a formal written complaint goes a long long way!
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Post by thinkaholic on Jun 11, 2016 14:38:53 GMT
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Post by vagueandrandom on Jun 11, 2016 15:25:56 GMT
marionk . . they don't want me to get another dx and after trying a few GPs at the practice I found one who is supportive and will prescribe my meds. . as per my previous consultant's letter. . I was dx in London and have moved 'up north' At my first appointment with my new GP practice (with a GP who refused to prescribe and I'm sure doesn't believe ADHD exists) I insisted on being referred to an ADHD specialist to continue my treatment . . it turns out that it was just a referral to secondary MH services and I kept asking about it and chasing it up and not once was I told that it wasn't for ADHD . . until I went to my appointment and found that there was no service in the area and I'd been referred for persistent low mood (even though the GP included a copy of my ADHD consultants letter, which was supposed to ease my transition of services) I was assessed by a nurse, and I expressed my concerns and he said that there was a consultant who prescribed ADHD meds. . and that's who I saw yesterday. .
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Post by vagueandrandom on Jun 11, 2016 15:38:40 GMT
thinkaholic I went to my nearest support group last Tuesday. . .an hour and 15 minutes drive away. . I know you're in Belgium, so probably don't know how stupidly complicated the NHS has become over the the past few years. . . The support group is not in the same NHS area as me . . they have a really good adult ADHD service there. . That's where I'm going to ask to be referred to, but my GP will have to ask for out of area funding from the Clinical Commissioning Group. . then there'll be another waiting list. .
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Post by vagueandrandom on Jun 11, 2016 15:47:17 GMT
hanonymouse . . .don't worry. . I'm no stranger to making complaints . . . When the first GP I saw refused point blank to prescribe my meds I went back (without an appointment) and refused to leave until I saw a Dr who could explain why I was being denied continuation of treatment . . It was then that I met the senior partner, who has been very good, so far. .
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Zonedout
Member's not posted much yet
I have no idea what I am doing.
Posts: 35
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Post by Zonedout on Jun 12, 2016 15:04:40 GMT
This is unbelievable. I'm so sorry you
are having such problems with these
so called professionals! You'd think that
after the hell of actually trying to get
diagnosed with ADHD in the first place,
you'd think that it would be plain sailing
after that and doctors would believe you
because an actual specialist has diagnosed you!
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Zonedout
Member's not posted much yet
I have no idea what I am doing.
Posts: 35
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Post by Zonedout on Jun 12, 2016 15:08:40 GMT
Also, the more I read the more I become convinced
that I should bother mentioning anything to do with
depression until I get an ADHD (if it is that) diagnosis.
I get the feeling that these doctors can't see past it!
My ADHD symptoms were present years and years before
Mr Depression started making an appearance.
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Post by annie on Jun 12, 2016 17:02:23 GMT
So,so frustrating vagueandrandom to have waited so long only to be seen by someone who appears to have such little understanding of how Adult ADHD presents itself!!
You certainly do have grounds for asking your Gp to write to your local CCG requesting funding for an "out of area" referral. You already have a dx - your recent psychiatric consultation seems to undermine this (did he say anything about why he thought the original dx was incorrect?) and because of this you are entitled to be seen by an Adult ADHD specialist who has extensive experience of assessing/dx and treating ADHD. I seem to think from something you said in the past that Wakefield might be your nearest Clinic?
It's astonishing that 8 years after the publication of the NICE guidance so many CCG's have yet to fund an Adult ADHD clinic. The one in Wakefield came about after extensive lobbying from a local Parent ADHD Support Group who wanted provision for young people moving through into adulthood. There must be so many young people who are being "dumped" into general adult psychiatry which is inadequately supporting this important transition. Whilst many Camhs need to improve, it seems an extraordinary waste of money to treat the child/young person only to leave them floundering in adulthood!!
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Post by marionk on Jun 12, 2016 21:44:55 GMT
Also, the more I read the more I become convinced
that I should bother mentioning anything to do with
depression until I get an ADHD (if it is that) diagnosis.
I get the feeling that these doctors can't see past it!
My ADHD symptoms were present years and years before
Mr Depression started making an appearance. Another thing they can't seem to see past is anxiety. On the other hand though if it's not causing you actual problems, (and they do seem to love emotional problems!) then you run the risk of being thought of as just trying to get drugs. Catch 22? I do wonder if there isn't a secret part of the NICE guidelines that says they have to try every other type of medication on you before they can prescribe ADHD meds. You do need to have had symptoms before age 12 for it to be ADHD.
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Post by vagueandrandom on Jun 13, 2016 9:33:05 GMT
annie I'm just back from the GP and I'll write in more detail later because I have a careers service meeting to go to. I'm also very angry and upset, so forgive me if it comes out disjointed. . it normally takes me a long time to write things. . . I looked on the Wakefield service's website and it turns out it's not even out of area. . .they take referrals from Yorkshire and Humber. The GP refused to refer me because the Consultant Psychiatrist's report said that my dx (from a SLAM ADHD specialist at a clinic in Lewisham) is inconclusive and he is rejecting it as a dx. . . . I said that he's not an ADHD Specialist, but GP seemed to think that his opinion was now all that would be considered. GP said that if he referred me, it would be rejected, so I asked him to refer me anyway to see if it was true. . .he refused. . I got very emotional and cried. .out of frustration and told him that I'm not mentally ill and I'm not depressed. .I'm angry! And that I felt that the CP didn't understand anything beyond concentration problems with ADHD and I listed symptoms that severely impact my life. . .and GP said "we all have problems in our lives. . and attaching a label to them won't help" I told him that I was not using it as an excuse, but it is a real problem and I wanted to get a treatment programme. . he said that I'd have to go along with the CP's treatment . . I told him that I don't want the meds and I won't take them. I said that I would complain. . .and I will. . but need some advice. . I almost had a full-blown tantrum in his office (not screaming or throwing things). . .picked up my things, stormed out, said "Whatever" and slammed the door. I'll be back later. . Thank you to everyone here who understands that I'm not making it up, I'm not delusional and I'm not unreasonable.
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Post by marionk on Jun 13, 2016 11:05:29 GMT
Ye gods! You did well to only slam the door. This was with the 'understanding' GP? Is he the practice manager?
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Post by easilydistracted on Jun 13, 2016 12:14:42 GMT
This is a farce :-(
Specialist says inconclusive, surely that merits further tests
Aand how can a non-specialist possibly decide that it's not?
The non-specialist's professional competence is at question here as he is making decisions outside his sphere of knowledge and that alone is grounds for a complaint.
Who can kick these clowns off the field?
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Post by vagueandrandom on Jun 13, 2016 13:59:11 GMT
Yes marionk he was the understanding GP who is the senior partner.
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Post by easilydistracted on Jun 13, 2016 17:34:23 GMT
www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.aspKnowledge, skills and performance Make the care of your patient your first concern. Provide a good standard of practice and care. Keep your professional knowledge and skills up to date. Recognise and work within the limits of your competence.www.gmc-uk.org/guidance/ethical_guidance/21187.aspDelegation and referral (2013) 1. In Good medical practice* we say: 15. You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must: c. refer a patient to another practitioner when this serves the patient’s needs.Referral 6. Referral is when you arrange for another practitioner to provide a service that falls outside your professional competence.To my mind, that you have one report from a specialist that says maybe, the non specialist cannot then say yes or no but can only say I don't know and must therefore refer you.
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Post by vagueandrandom on Jun 13, 2016 17:55:42 GMT
Thanks easilydistracted useful for others too. . Also you can get help with NHS complaints in England through Healthwatch You need to find your local area's pages and there's an easy to fill in online form . . In my area it puts you in contact with a local free advocacy service who will help make your complaints with you.
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Post by marionk on Jun 13, 2016 21:50:09 GMT
Trying not to be rude about the GP's . . . and the non specialist psych . . . It does look like official complaints are in order. Does this mean he won't prescribe even the mph any more?
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Post by vagueandrandom on Jun 13, 2016 22:09:36 GMT
marionk the consultant reluctantly prescribed 5mg IR mph 3 times daily. . which is what I was started on a year ago. . I was up to 36mg and tried 54mg of Concerta before. . I told him that it wasn't having any beneficial effects, just making me tired. . thought he might suggest something else, or change dose . . no. . just gave me less of something that didn't work the last time. . GP can only prescribe under instructions from the consultant. . I'm wiped out after today. . will go into details about my complaints, and why, tomorrow
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Post by vagueandrandom on Jun 13, 2016 22:12:50 GMT
Be rude, by all means. .
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Post by vagueandrandom on Jun 14, 2016 15:30:24 GMT
UPDATE:
OK . . I got caught off-guard and answered the phone. .
it was the complaints advocacy service that I was put onto through Healthwatch . . very interesting. .
Not incredibly hopeful. . he thinks that the best complaint would be against the consultant to get an explanation
as to why he disagrees/discounts the specialist's dx and recommendations. . .
It then depends on whether the Trust believes that he made the right/wrong decision. .
I took a deep breath and made myself phone the hospital to ask if I would automatically be sent my report (no)
and got put through to the psych's secretary who said that they don't normally, but she'd ask him and send it to my home address. .
of course. .he could always refuse. .and then I'd have to make an official medical records request. .
and apparently they can still refuse with MH reports because they may cause further mental distress. .
The advocate has agreed to put the major points in an email and to have a face to face meeting when we're ready to put the complaint together.
If the psych is found to be wrong. . . the Trust would have to offer suitable treatment. .
and only if they can't, they can refer me to the Specialist Adult ADHD Service.
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Post by easilydistracted on Jun 14, 2016 21:21:48 GMT
OK, that's still some progress
"he thinks that the best complaint would be against the consultant to get an explanation as to why he disagrees/discounts the specialist's dx and recommendations. . ." This is the professional competence card, why does the consultant think he knows more than the specialist? What are their relative experiences/qualifications?
And surely the specialist's report, by dint of him being a specialst, more weight should be given to his unless your consultant thought himself more competent, what enquiries did he make of the specialists competencies?
Now In the case of professional competence, if you have any doubts as to your competence you should at the very least refer the question to a more experienced person who can then provide further guidance. Did your consultant do this?
Also, for the trust to make a decision they would have to weigh up not just the consultants report but also the specialists. ( They cannot look at only one side of the picture, ie discount the specialist without reading his report )
Regarding the non-disclosure of mental health records, ( can see how that may be appropriate in *some* cases but not yours ) this surely does not give them the right to do as they like.
In the interests of transparency and accountability, are you able to appoint a 3rd party as your representative in this case? Obviously this won't be your preferred course of action though, understandibly you want to see them yourself.
And again, if your specialist saw fit to give you his report, why does the consultant disagree?
You are not asking for the moon on a stick, you are simply asking to be referred to the closest specialist service
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Post by vagueandrandom on Jun 14, 2016 22:04:44 GMT
easilydistracted I agree with all of your points. The advocacy service is a 3rd party representative . .and I'm glad that I have them on board. They said that it was very clear that I have some kind of case, but complaints to the NHS have 3 outcomes. . Apology, Explanation, or A promise of improvement to services . . so I have to decide which outcome will have a more positive effect. . The outcome that I want is to be seen at the nearest Adult ADHD Service. . If I demand that at the outset, I have less of a chance of getting it. . The GP won't refer me because of the consultant psychiatrist's (CP) report, so to ask for an explanation using my paperwork from the specialists along with NICE guidelines etc is the most likely to get me the result that I want. I still haven't seen the report, although the CP's secretary has said that she'll ask for it to be sent. If the CP refuses me a copy of his report, I can ask my GP, informally if they can make me a copy. . because a medical records request takes 8 weeks. . I still intend to write to the practice manager expressing concern about the lack of belief and/or knowledge about ADHD I have experienced from 3 of the GPs (but not until I get a copy of the report) . .my MP and a few others. . Without actually having a copy of the report, I can't make a case. . and, because I have ADHD I can't remember with any accuracy what he actually said. .
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