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Post by Deleted on Sept 14, 2011 18:42:59 GMT
Be aware, you have a diagnosis and are a drug responder, you are about to find out if live in the Cambridgeshire area as an adult with ADHD, you have been listed as a a "low priority" for drug treatment because there is insufficient evidence for treatment of adult ADHD.
Yep...that is not a mistake. They are[glow=red,2,300] IGNORING[/glow] NICE and saying the evidence is insufficient.
Your only option is to get exceptional cases funding, which involves proving WHY your need for prescribing makes you unique - and here is the rub - you have to PROVE you are exceptional in some way...it is not enough to have the words of your consultant. There has to be a categorical measure from an independent source.
When I asked for detail they said "Ask your consultant", and so they are willing to ignore NICE on prescribing, so of course they are going to agree with the consultant on a test they advise measures change...yeah right.
If you think you are safe, think again, apparently at least two other parts of the country are going to adopt the same approach
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Post by kakema on Sept 14, 2011 19:50:38 GMT
I'm speechless. I take it they didn't say which parts of the country?
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Post by annie on Sept 14, 2011 21:15:53 GMT
Hi kiwihelen
Can you tell us a bit more about where and how this information came your way?
Individuals who have been dx with a recommendation to begin drug treatment would almost certainly have a case for discrimination under the Equality Act.
Do give us some more information about "they".
annie
annie
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Post by Deleted on Sept 15, 2011 7:15:38 GMT
Medicines management for NHS Cambridgeshire, the only reason I don't have the document is it is being ratified in two other PCT areas and until that happens it is not for public circulation.
My ex partner was diagnosed ADHD in May by the lovely Dr Cubbin, and we have been fighting to get his Equasim prescribed on the NHS since then.
I'm "lucky" I work in the NHS and spoke direct to the "horses mouth" (wanted to put horses arse, but I actually like the pharmacist I spoke to), so I could understand how to improve our chances of getting an exceptional case recognized as valid and legitimate.
J (my former partner) is a very, very private person, and is considering going public about this because of the injustice. But we need to get the meds somehow first.
Meds are the difference between his being employed and not...apparently that doesn't make him exceptional...the case precident is based on people with ankolysing spondelytis being refused a very effective medicine despite the fact that without it they can not work.
Do we have any lawyers who come on this site, we can't afford the fight and would love someone to take the case on pro-bono.
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Post by annie on Sept 15, 2011 13:57:02 GMT
Thanks for this information.
Cambridge do have an Adult ADHD clinic at Addenbrookes run by Professor Muller so it will be interesting to see how they deal with the recommendations for drug treatment coming out of that clinic.
PCT's are using some very "imaginative" ways of denying adults the specialist service they require!! I wonder if this relates only to those people who have gone down the private route? Not that that's anymore legal.
Do keep us posted.
annie
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Post by kakema on Sept 15, 2011 19:50:35 GMT
There is a Human Rights Lawyers association that will no doubt list names of specialist firms. There is a firm I've read about called Public Interest Lawyers that take on some big and contentious stuff but it's often refugee and terrorist subject right cases from what I can see.
Also, the larger legal firms all have pro bono services for charities - but we'd need a charity willing to take a generic challenge and then persuade a firm to support it. Could take a while...
It would be particularly interesting, too, to find someone who had taken out income protection insurance. If they became too disabled to work unmedicated, the insurance firm might be motivated to challenge the pct policy.
HTH
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Post by Deleted on Sept 16, 2011 10:23:04 GMT
There is a Human Rights Lawyers association that will no doubt list names of specialist firms. There is a firm I've read about called Public Interest Lawyers that take on some big and contentious stuff but it's often refugee and terrorist subject right cases from what I can see. Also, the larger legal firms all have pro bono services for charities - but we'd need a charity willing to take a generic challenge and then persuade a firm to support it. Could take a while... It would be particularly interesting, too, to find someone who had taken out income protection insurance. If they became too disabled to work unmedicated, the insurance firm might be motivated to challenge the pct policy. HTH Income protecion would be an issue in itself. Its highly doubtful you would be covered - under a short term accident & sickness policy or ASU (MPPI, Loan PPI etc) this would always be classed as a pre-existing medical condition an thus excluded. TRUE income protection policies are underwritten on application not on claim and at that stage, even if undiagnosed, the adhd would have to be mentioned (unless of course there hadnt been any suspicion or investigations done ) and this would in my experience lead to an exclusion for any mental illlness.
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Post by Deleted on Sept 16, 2011 10:28:40 GMT
also aside from the pre-exisiting exclusion on ASU policies there is also this fairly standard clause. No benefit paid for;
Stress, anxiety, depression, fatigue or other mental or nervous disorders, or conditions of a psycho-neurotic origin, unless diagnosed by and under the continuing care of a Consultant Psychiatrist.
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Post by Deleted on Sept 16, 2011 12:54:13 GMT
Stress, anxiety, depression, fatigue or other mental or nervous disorders, or conditions of a psycho-neurotic origin, unless diagnosed by and under the continuing care of a Consultant Psychiatrist. That is exceptional badly worded. Does it mean that: ' Stress, anxiety, depression, fatigue or other mental or nervous disorders, or conditions of a psycho-neurotic origin' are only covered if ' under the continuing care of a Consultant Psychiatrist.' or: ' Stress, anxiety, depression, fatigue or other mental or nervous disorders' are not covered at all, and 'conditions of a psycho-neurotic origin' are only covered ' unless diagnosed by and under the continuing care of a Consultant Psychiatrist.' AD(H)D is of a psycho-neurotic origin so if you are diagnosed by a Consultant Psychiatrist subsequent to taking out the policy you should be covered.
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Post by Deleted on Sept 16, 2011 13:46:13 GMT
Stress, anxiety, depression, fatigue or other mental or nervous disorders, or conditions of a psycho-neurotic origin, unless diagnosed by and under the continuing care of a Consultant Psychiatrist. That is exceptional badly worded. Does it mean that: ' Stress, anxiety, depression, fatigue or other mental or nervous disorders, or conditions of a psycho-neurotic origin' are only covered if ' under the continuing care of a Consultant Psychiatrist.' or: ' Stress, anxiety, depression, fatigue or other mental or nervous disorders' are not covered at all, and 'conditions of a psycho-neurotic origin' are only covered ' unless diagnosed by and under the continuing care of a Consultant Psychiatrist.' AD(H)D is of a psycho-neurotic origin so if you are diagnosed by a Consultant Psychiatrist subsequent to taking out the policy you should be covered. These short term asu policies have generic underwriting so that they are available to the general population - this is useful to people who for example are overweight, smokers or work in manual occupations. to do this they exclude the 2 most common reasons for time off in the uk, stress and back complaints and also include a pre existing condition exclusion. Thing is with your example above this would possibly be true if the person in question had sought NO medical advise before starting a policy, otherwise its the pre-existing clause.
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Post by Deleted on Sept 16, 2011 13:48:19 GMT
That is exceptional badly worded. Can i also point out the irony in this statement? in the spirit of lighthearted banter
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Post by Deleted on Sept 16, 2011 14:49:44 GMT
That is exceptional badly worded. Can i also point out the irony in this statement? in the spirit of lighthearted banter Yep, hands up. Yet another post gone over with a fine tooth comb making sure all points are salient and expressed concisely, and then a stupid error to appear as if by magic after you press the commit button. ;D
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Post by Deleted on Sept 16, 2011 15:22:06 GMT
Can i also point out the irony in this statement? in the spirit of lighthearted banter Yep, hands up. Yet another post gone over with a fine tooth comb making sure all points are salient and expressed concisely, and then a stupid error to appear as if by magic after you press the commit button. ;D lololol i reckon the admins do it behind our backs....
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Post by Deleted on Sept 16, 2011 15:51:16 GMT
nfaw.£"
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arbuckle
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Post by arbuckle on Sept 16, 2011 20:40:38 GMT
Sorry to hear that guys I can only report that I haven't encountered any major problems here in London. Apart from to have to be a bit assertive when dealing with GP/walk-in centre.
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Post by Deleted on Sept 17, 2011 9:50:04 GMT
Thanks for this information. Cambridge do have an Adult ADHD clinic at Addenbrookes run by Professor Muller so it will be interesting to see how they deal with the recommendations for drug treatment coming out of that clinic. PCT's are using some very "imaginative" ways of denying adults the specialist service they require!! I wonder if this relates only to those people who have gone down the private route? Not that that's anymore legal. Do keep us posted. annie I will keep you posted, but it is going to be a global ban no matter how you got your Dx, Exceptionality is going to be very hard to prove, but watch this space.
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Post by boo on Sept 17, 2011 10:15:17 GMT
so, is it a case that they will fund your dx and then say, yep you have it........ bye then! it seems totally contradictory when they are one of the PCT's with a dedicated specialist unit... is it only for new dx, people that haven't started treatment yet? surely they won't withdraw treatment for those already receiving it? and whats going to happen for children on meds, will they have access to continued treatment once they reach adulthood?
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Post by boo on Sept 17, 2011 10:42:14 GMT
i'm not saying its ok for it to only be for new dx btw, just trying to understand what the change would mean for different people how many steps back is this!? i cant understand the mentality though, if it was a PCT that had never really recognised adult ADHD and had kind of been forced to acknowledge it when NICE published, perhaps it would be less shocking... (still wrong.... but just less of a shock)..... but its not is it i remember when i went for my dx, one of the things they mentioned was that when they were setting up the specialist/dedicated team/unit, they were trained/guided by the specialist team/unit at Addenbrooks! if this "forward thinking" PCT is taking no notice of the NICE guidelines.... what hope is there! ?
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Post by kakema on Sept 17, 2011 11:30:18 GMT
There is a Human Rights Lawyers association that will no doubt list names of specialist firms. There is a firm I've read about called Public Interest Lawyers that take on some big and contentious stuff but it's often refugee and terrorist subject right cases from what I can see. Also, the larger legal firms all have pro bono services for charities - but we'd need a charity willing to take a generic challenge and then persuade a firm to support it. Could take a while... It would be particularly interesting, too, to find someone who had taken out income protection insurance. If they became too disabled to work unmedicated, the insurance firm might be motivated to challenge the pct policy. HTH Income protecion would be an issue in itself. Its highly doubtful you would be covered - under a short term accident & sickness policy or ASU (MPPI, Loan PPI etc) this would always be classed as a pre-existing medical condition an thus excluded. TRUE income protection policies are underwritten on application not on claim and at that stage, even if undiagnosed, the adhd would have to be mentioned (unless of course there hadnt been any suspicion or investigations done ) and this would in my experience lead to an exclusion for any mental illlness. Ooo, Badwool, are you a fellow insurance nerd? I was indeed referring to 'true' income protection, and since I didn't know I had ADHD until I went sick from work in my 40s, there's every possibility that I might have found myself incapacitated by a condition that I had, but nobody knew about, at the point of application. But it was a bit of a throwaway remark! More seriously, Kiwi, try Bindmans - a big civil rights firm that might do a case pro bono.
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Post by Deleted on Sept 17, 2011 20:33:50 GMT
This is where people get confused at the whole relationship of the PCTs to the rest of the NHS.
Until GP commissioners take over the PCTs are the commissioners, in this case this is NHS Cambridgeshire. Cambridge Universities Hospital Foundation Trust (Addenbrookes), Cambridgeshire & Peterborough Foundation Trust (Mental Health Trust), Hinchingbrooke Hospital Trust and Cambridgeshire Community Services NHS Trust, along with the GPs are all providers.
We provide the services (I am part of CCS), the commissioners make decisions what services are need and pay us to deliver them. Commissioners basically set funding priorities...so decide how many hip surgeries are needed etc, and we have to fit to their budgets. At this time we are paid on a bulk contract (e.g. to provide dietetic services for the community), but eventually will be paid on a "payments by results" basis (e.g. we will be paid X amount of money per patient to achieve Y outcome).
NHS Cambridgeshire inherited HUGE debt from the merger of the three smaller PCTs which happened in 2007, and has remained overspending due to a very simple factor - at the south end of the county there are wealthy demanding health consumers who expect treatment and nag their GPs until they get it. At the north of the county we have a very poor population with horrendous health outcomes, so when they hit hospital they are sick and expensive.
So we are now having to cut budgets harder than most other areas, to address the debt as well as the government funding freeze on health. So then healthcare rationing comes in, and decisions are made about "evidence and efficacy"
If you look at NICE it says 70% of people dx with ADHD as children, appear to as adults no longer present with symptoms requiring treatment. Secondly, the actual evidence for treatment on adults is statistically quite weak (interestingly enough if you read some of the post-NICE literature it suggests that this is because a thereputic dose of MPH is at around 1g/kg of body weight, and the newer studies are showing much better outcomes using these higher doses)
In response to the first point, that 70% does not address the 30%, and I have my doubts on the 70% - they might have learned to mask the behaviour, but the energy put into masking the behaviour IS exhausting and will eventually come out as co-morbid mental health problems
In response to the second point, the newer studies and the health economic data done on them SHOULD be considered alongside NICE but we will have to provide the papers to the exceptions committee if we want them examined.
The most difficult point (and I have an advantage having done exceptions work for patients myself) is that to prove exceptionality, you have to have a categorical and measurable reason why the patient is going to gain substantially more benefit from treatment than other patients in the cohort group.
So we are looking at the cohort "Adults with diagnosis of ADHD who were not diagnosed as children". And the measures they will discount are 1) self-reports, 2) lay observer reports, 3) private consultant observer reports, 4) social measures unless verified by some unbiased observational reports.
So I can't say "This is making the difference between J being employed or not", because I am a lay person and I could be biased because I know him, we have to get the HR department to go ahead and make a decision as to whether his work has improved enough now he is on medication, that they are prepared to drop the capability - and even then this will not guarantee medication, unless we can argue the health economic and treatment benefits as well.
Oh, and his GP has to be the signatory on the exceptions form.
We have also been told that to be considered he has to be referred by his GP into the NHS to be assessed to see whether the diagnosis is "correct" - this is a bit of a rub, because Dr Cubin commented that him being on high doses of venlafaxine as an "antidepressant", was masking some of his observable ADHD traits, so she was very reliant on spending the time to let him settle in the interview AND on the observer reports from his Mum and me. And as well, the waiting list (assuming the general psych will refer him to tertiary services) will be around 18 months.
I will speak with J about Bindmans - we are trying to keep our powder dry as we go through this process, but will take the gloves off if we can't get exceptions funding.
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Post by Deleted on Sept 19, 2011 9:21:31 GMT
Income protecion would be an issue in itself. Its highly doubtful you would be covered - under a short term accident & sickness policy or ASU (MPPI, Loan PPI etc) this would always be classed as a pre-existing medical condition an thus excluded. TRUE income protection policies are underwritten on application not on claim and at that stage, even if undiagnosed, the adhd would have to be mentioned (unless of course there hadnt been any suspicion or investigations done ) and this would in my experience lead to an exclusion for any mental illlness. Ooo, Badwool, are you a fellow insurance nerd? I was indeed referring to 'true' income protection, and since I didn't know I had ADHD until I went sick from work in my 40s, there's every possibility that I might have found myself incapacitated by a condition that I had, but nobody knew about, at the point of application. But it was a bit of a throwaway remark! More seriously, Kiwi, try Bindmans - a big civil rights firm that might do a case pro bono. Work mode on there lol. Its my job.
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Post by andy12345 on Sept 21, 2011 13:17:52 GMT
oh well, just have to start bleeding on their doorsteps,
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