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Post by DE on Apr 30, 2012 5:02:30 GMT
I have a friend with AADD. His GP is refusing to prescribe medications recommended by his pyschiatirst. I understand she has a right to do this. Does anyone know how we find a more sympathetic GP? Someone with an interest in ADHD maybe. Any organisations that may be able to advise? We live in the Portsmouth area - Hampshire. Thanks D
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Deleted
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Post by Deleted on May 2, 2012 22:01:14 GMT
Didn't somebody ask this question a day or two ago??
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Post by Atticus on Aug 8, 2012 19:43:44 GMT
It is a moot question. Doctors claim they don't have to do anything they don't want to, but the Equalities Act 2010 makes refusing to provide a service to someone because they have ADHD illegal.
In these cases it would appear doctors are refusing to treat ADHD specifically because it is ADHD (a bit self-evident, that one) so it might be quite illegal.
I hope we are able to raise enough money in the near future to fund a test case.
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Deleted
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Post by Deleted on Aug 9, 2012 5:51:14 GMT
Tricky, Atticus - mine is refusing because the treatment is a CD and unlicensed for the treatment of adults with ADHD, and the PCT hasn't put in place a shared care protocol for adults (although there is one for kids) - she claims that, as a result of all that, she doesn't know how to monitor me while prescribing. While she's clearly being over-precious, I suspect that, technically-speaking, she's within her rights. They all have plenty of that sort of rubbishy framework bollox to hide behind.
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Post by prunesquallor on Sept 11, 2012 22:28:55 GMT
I'd like to bump this thread, as I'm in a similar position to the original poster.
My GP has been happy to refer me to psychiatrists, but is then unwilling to prescribe MPH even with the psychiatrists' guidance. I would like to change GP for this reason, but obviously I don't want to walk into the same brick wall with another GP. I'm also wary of being labelled a "drug seeker" if I ask them outright.
So any ideas on how one does find GPs who are willing to do the shared care with psychiatrists?
(My area is Bracknell / Ascot / Wokingham - but the question is applicable to many areas I think).
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Post by Deleted on Sept 12, 2012 1:37:23 GMT
Here's my latest blast at the PCT - should be self-explanatory:
To: PALS at Croydon PCT It has come to my attention that, despite my having raised concerns with the Croydon PCT about my difficulties in obtaining adequate primary care and treatment of my ADHD (see email string below), the Croydon PCT has now taken a decision on the subject of shared care for adult sufferers of ADHD and has not paid me the courtesy of responding directly to my concerns or even informing me directly of its decision. Bad form. But it's not why I'm writing. What's far worse is that the decision it has made is manifestly unreasonable. The background: I was diagnosed with ADHD in April last year and initially prescribed methylphenidate (MPH) for the relief of my symptoms, as per the approach recommended in the NICE Guideline CG72 for the treatment of ADHD. However, the adverse side effects of MPH proved to outweigh the medical benefits, so I was offered dexamphetamine, the alternative stimulant medication recommended in the guideline in cases where methylphenidate is found to be unsuitable or ineffective. In fact, two specialist ADHD psychiatric consultants (Drs C.... and X....) have now both fully assessed my symptoms and both have given a diagnosis of ADHD. Both recommended and prescribed the use of dexamphetamine, a recommendation subsequently accepted by a third ADHD specialist psychiatrist, Dr P.... , based in the Croydon Adult ADHD service. I have been taking the medication for over a year, and my treatment regime is now stable and providing good relief of my symptoms. So it's fair to say that a number of specialist doctors, who know what they're doing, have all reached the same conclusion in respect of the appropriateness of dexamphetamine for my continuing medical treatment, and that treatment is working well. My quality of life has been transformed. The problem: my GP has now told me that the PCT pharmacy 'team' - I don't know the precise name of the sub-group within the PCT, but it's a group connected with establishing prescribing guidelines - has confirmed to her by email that it will approve the prescribing of methylphenidate or atomoxetine only. I consider this decision to be unacceptable, and I would like both an explanation and a clear indication of how the PCT plans to provide me with appropriate primary care for my condition. It is unclear to me on what basis the PCT could possibly have considered it reasonable to ignore the clear guidance issued by NICE in respect of appropriate medical treatment strategies for adult sufferers of ADHD. The Guideline explicitly recommends methylphenidate, atomoxetine and dexamphetamine as the primary medical treatment options. The PCT's refusal to adopt the full range of NICE-recommended medications isn't simply a case of ignoring a discretionary recommendation. It's an arbitrary and unjustified rejection of the findings of the most in-depth review of ADHD treatment currently available to clinicians in the UK. For me, personally, it represents an unreasonable, unfair and potentially medically inappropriate interference in my current, effective, treatment regime. If my GP 'cannot' prescribe my dexamphetamine, I will be obliged to choose whichever I consider the lesser of two evils - either to give up entirely my current, stable and effective, treatment and suffer the full impacts of my ADHD symptoms; or to accept atomoxetine, which, as a non-stimulant, has a completely different profile of effect (I would no longer be unable to take 'drug holidays') and is often poorly tolerated. At the very least, giving me no choice but to switch to atomoxetine exposes me completely unnecessarily to the risks of that drug's known, and significant, side-effects. But presumably, the Croydon PCT pharma team think their judgment is more sound than that of the experts. They must have spotted something important, and obvious, that I'm missing in trying to understand this. I can't imagine, for example, that it can be the cost of prescribing, since the commonest treatment option is also the cheapest - MPH - and the more expensive treatments (atomoxetine and dexamphetamine) would only ever be offered to a relatively small proportion of ADHD patients. So adding one expensive alternative alongside another in order to provide appropriate treatment to patients like me is hardly going to blow the PCT's prescribing budget. The PCT has surely understood that, for the price of some dexamphetamine, it would be preventing my disorder from ruining my career, my finances and my personal relationships, and thus saving the state the substantially greater economic costs of, for example, my inevitable unemployment due to the anxiety, depression and stress I would experience without treatment - hasn't it?. And let's not make this all about me - the PCT will, no doubt, have estimated the number of ADHD suffers in Croydon who will now, as a result of its decision, have to live without any medical relief of their symptoms because they can tolerate neither mph nor atomoxetine - won't it? It must have estimated the number of lives that will be blighted when deprived, by its decision, of access to a legitimate medal treatment? Perhaps I need to make a freedom of information request to get answers to my questions - or perhaps, more sensibly, you, PALS, can find out for me, and save me needing to go down that route... Can the PCT confirm to me that it has considered the full costs of its decision? Let's face it, the costs are going to be high, relative to the cost of the drugs - medicated, I am competent, happy, and as a senior manager working for a major company, it's probably fair to say that I make a substantial personal contribution to the economy. Untreated, all that will be once more at risk, and I'll be facing unemployment and popping beta-blockers or anti-depressants, consuming counselling services, and generally making myself a burden on the state. So I'd be very interested to know the value that the PCT team attached to these risks. What was the cost of the risk to my life itself, for example?. After all, I was at the brink of suicide before my diagnosis, unable to understand what was 'wrong' with me, and why I couldn't 'fix' it - what was the cost applied to the risk that I - and others like me - would go through with it, once I've been cast adrift by the 'system'? What was the notional cost applied to the impacts of all that, on my daughter's life? My vehemence may tempt you to dismiss these questions as irrational; but I'm utterly serious. I'd like to know - and will, if necessary, make an FOI request to find out - the notional charges for a life, and all the other impacts, that were used in the PCT's cost-benefit model. Because the PCT must, surely, have modelled the costs before overriding a national guideline that cleared the way for prescribing this drug - all of these impacts, estimated across the entire population of Croydon adults with ADHD, should have been factored in to the decision. Unless the PCT recklessly accepted all the costs without understanding them. Of course, I may be being unfair. It may have been a question of other, non-financial risks. Perhaps the PCT felt it necessary to protect its GPs from the professional risks of...prescribing a well-understood, albeit locally unlicensed, medication in cases where the government's appointed experts have, after an in-depth review, recommended that it would be an appropriate choice? I do find it shocking, to be honest, that two GPs in my practice consider it more reasonable to subordinate their clinical expertise and judgment to an administrative dictate, than to exercise the modest level of discretion needed to provide appropriate primary care to an individual patient, under the guidance of a competent consultant, and in accordance with national standards. But there we are. Maybe I shock easily. It seems to me that the PCT must now take responsibility for ensuring that I and others like me in Croydon are not harmed by its decision. After all, we are still patients under its care - and for whom, in my case, an appropriate specialist clinician, commissioned explicitly by it to assess my treatment needs, has recommended a course of treatment that conforms to a national guideline. The PCT is directly responsible for blocking GPs from providing appropriate primary care. I'm certainly interested to know what, in its wisdom, the PCT has suggested GPs should do when caring for patients who turn out to tolerate neither of their 'approved' drugs. Wish them luck, prescribe tea and sympathy as required, and hope for the best? What ongoing patient care considerations were taken account of when this decision was taken? So I repeat: what, exactly, does the PCT suggest I do now? I ought, perhaps, make clear (in case there was any doubt) that I am extremely unhappy about this. I should probably add, too, that I consider myself sufficiently well-educated and confident to be able to defend myself, possibly more capably than others who may have been exposed to similarly unreasonable behaviour. If this matter is not resolved promptly, I will pursue every available route available to me to challenge their decision, in order to assure the continuing quality of my ongoing care under the NHS. I suggest, therefore, that the PCT gives my points some careful thought before it responds. Yours sincerely
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Deleted
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Post by Deleted on Sept 12, 2012 4:23:01 GMT
If that doesn't do the trick, then I don't know what will Shiny.
Well written, and to the point. It frustrates me to read about it.
John
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Post by DKL - darkknightslover on Sept 12, 2012 8:03:51 GMT
Wow! Please let us know what the reply is when you get it!
Sent from my GT-I9000 using proboards
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columbo
Member's not posted much yet
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Post by columbo on Feb 9, 2013 2:38:27 GMT
It's been a while.. Any news on what happened?
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Deleted
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Post by Deleted on Feb 10, 2013 20:14:26 GMT
Sort of. I am currently getting my scripts from the Croydon ADHD clinic - I email them once a month, and they leave it in reception for me - or my husband - to collect. So I am getting my meds. But it's been positioned as a 'temporary' arrangement. Procrastination rules, as ever - but I've badgered the senior partner at my GP practice about the fact that I am still, technically, in a position of uncertainty about my primary care, which is his job to sort out. Sadly, it'll probably take another crisis, like the Clinic closing, to get me shifted enough to really run this to ground. By which time I'll have completed my migration to Manc and not care any more...
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Post by frustrated on Mar 25, 2014 18:39:58 GMT
Not sure if you have now dealt with this issue, but gp in stubbington has referred me for treatment and has told me once I have seen the psychiatrist the gp will prescribe whatever the psychiatrist recommends.
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Post by astraka on Apr 25, 2014 16:54:34 GMT
This is another of those postcode lottery things isn't it? Locally (Middlesbrough) GPs won't prescribe so it's another of those situations where people are stuck in secondary care just because of medication. At least people who need the meds can get them
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Post by the Dizzyone on Dec 14, 2014 15:34:28 GMT
Awesome letter! My GP won't prescribe Concerta because there is no shared care arrangement and he doesn't feel confident to prescribe outside of his own clinical expertise. And to be fair I think he has a point. Because although Methylphenidate is not contraindicated, it is unlicensed for initiation in adults. (According to the British National Formulary). So although a psychiatrist can decide to prescribe off-licence, a GP shouldn't really. So it is up to the PCT/CCG to make formal arrangements, for the protection of everyone, including the GP. So my psychiatrist continues to write scripts every month and sends them to my GP surgery for me to collect. Which is a bit of a waste of time and money (I imagine a consultant's time is more costly than a GP's) so hopefully the local formulary arrangements can be pushed through in order to reduce NHS costs. I have written to my MP for support in this regard. Soon the drug companies will start doing research into Methylphenidate initiation in adults, so in about 5-10 years hopefully we will be able to resolve the issue!!
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