View Full Version : Response from letter to parliament


Colin
08-30-08, 05:17 AM
I wrote to my mp about the sorry state of treatment of ADHD and the cost its causing the nation in so many ways, and many of the other points we all know,..

she wrote to the department of health, the reply I got was a bit astounding, considering its from the under secretary of state. :=
ADHD is described in ICD-10 as a disorder of childhood. until recently there was a divergence of opinion on the diagnosis of ADHD amongst child mental health professionals in the UK but evidence has been gathered over the years which has validated the diagnosis and indicated what are effective treatment approaches.

The position concerning ADHD in adults is less clear. The diagnostic manuals (DSM IV for USA and ICD for the WHO) do not currently include adult ADHD although they note that the disorder found in childhood may persist. There have been a number of follow up studies of people diagnosed which indicate that a small proportion may continue with ADHD problems into adulthood. Very few treatment trials have been conducted in adults, but some positive results have been reported with stimulants (such as Ritalin) and with antidepressants. The studies have contradictory findings and are mostly small. Inattentiveness, rather than hyperactivity, is sad to characterize the adult disorder. Academic underacheivement, depression, relationship skills problems and substance abuse are also reported to be common.

There is increasing interest among clinicians treating adult patients with this disorder and attention is being given to sharing knowledge through conferences and publications. The NICE is due to publish new guidance, Attention deficit hyperactivity disorder: pharmacological and psychological interventions in children young people and adults, in September.

The purpose of the guidelines is to ensure that everyone gets consistent access to best practice treatment, wherever they live. We expect the publication to make it easier for adults with ADHD to get the drug and psychological treatment they need.

In the meantime I recommend that xxxx continue to discuss his treatment options with his GP and PCT recently a voluntary group called adult attention deficit disorder UK has been formed and he may also wish to contact them for advice they can be contacted aadd.org.uk

meadd823
08-30-08, 05:38 AM
When I click on the hyperlink I just get a page saying the domain has been registered just not designed -

Colin
08-30-08, 05:40 AM
oh i spelt the link wrong lol its corrected now...
ive also posted the same post to the forum on that site.

planetdave
08-30-08, 07:20 AM
Hmm - I read 'blah blah blah sweep it under the carpet blah blah not taken seriously blah blah voluntary organisations blah blah see what NICE says.'

That NICE report is going to have to blow the lid off the inertia of the NHS.

Colin
08-30-08, 07:34 AM
yeah, i cant beleive it, so much of that reply is wrong i dont know wether to laugh or cry lol.

its an insult to sugest I discuss treatment options with my GP and PCT when ive already stated ive lost 13 years of my life becuase they have denied me the medication.

I mean comon saying "untill recently .. adhd in children ..", are they even in the same century as the rest of us ?

and what is this divergence? is it just their way of saying there wrong ?

as for the studies etc, the only thing that isnt totaly wrong is that adhd changes from as you get older. I dont know of any valid studies that are actually contradictory.

oh and when did antidepresants start working for people with adhd?

It needs a reply, but ive not got enough energy to do it justice, theres just so much i dont know where to start.

I think to blow the lid of its going to need something big, very big indeed.

Andrew
08-30-08, 04:07 PM
You can always send them the International Consensus Statement on ADHD (http://psych.colorado.edu/~willcutt/pdfs/Barkley_2002.pdf)

Mincan
08-30-08, 04:16 PM
I love that international consensus statement... it always shuts people up... Im thinking of putting it in a glass frame and hanging it above my bedroom door like my personal constitution to freedom er somthing.

Andrew
08-30-08, 04:19 PM
I love that international consensus statement... it always shuts people up... Im thinking of putting it in a glass frame and hanging it above my bedroom door like my personal constitution to freedom er somthing.

Me too!

Colin
08-30-08, 06:59 PM
You can always send them the International Consensus Statement on ADHD (http://psych.colorado.edu/~willcutt/pdfs/Barkley_2002.pdf)

wow that is awesome thanks :D, i was looking through to see if it aplied to adults, but its making no distinction that its related only to children.

kilted_scotsman
09-02-08, 03:20 PM
That doc should be on a sticky Andrew.

If you guys think it's bad in America.....woooow it's 10 times worse here n the UK... documents like that really help make the case. So it'd be good to have them somewhere obvious on the site so we could print it out and take it to appointments with UK GP's and mental health practitioners.

good to have up the sleeve when you're told Adult ADD doesn't exist... the document is pretty clear on that.

kilted

Andrew
09-02-08, 05:13 PM
wow that is awesome thanks :D, i was looking through to see if it aplied to adults, but its making no distinction that its related only to children.

I would just point them to this section:

Follow-up studies of clinical samples suggest that sufferers are far more likely than normal people to drop out of school (3240%), to rarely complete college (510%), to have few or no friends (5070%), to underperform at work (7080%), to engage in antisocial activities (4050%), and to use tobacco or illicit drugs more than normal. Moreover, children growing up with ADHD are more likely to experience teen pregnancy (40%) and sexually transmitted diseases (16%), to speed excessively and have multiple car accidents, to experience depression (2030%) and personality disorders (1825%) as adults, and in hundreds of other ways mismanage and endanger their lives.

meadd823
09-02-08, 06:40 PM
Begin with a purchase of a packet of K-Y lubricating jelly water soluble - it works wonders when the need to pull the head out of a body orifice arises - it will work on politicians :rolleyes:-

Oh and you may want some clinical study documentation - welcome to meadd823 in through the out door approach to clinical studies. :D

Gender differences in a sample of adults with attention deficit hyperactivity disorder (http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6TBV-45Y22B0-6C&_user=10&_origUdi=B6VC9-4538H37-1&_fmt=high&_coverDate=07%2F31%2F1994&_rdoc=1&_orig=article&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=e2782445b123e42972b364c575047996)


Each subject had a clinical diagnosis of childhood-onset ADHD confirmed by structured interview. The male and female ADHD adults were similar to one another but more disturbed and impaired than non-ADHD adult control subjects. Compared with normal control females, ADHD women had higher rates of major depression, anxiety disorders, and conduct disorder; and more evidence of school failure and cognitive impairment. The consistency of these findings in both genders further supports the validity of the diagnosis of ADHD in adults.


Our results stress the viability and importance of identification of female subjects with ADHD. The underidentification and undertreatment of females with ADHD may have substantial mental health and educational implications, suggesting that research is needed to develop a better understanding of clinical indicators of ADHD in females.

{End Quote}


Adult ADHD significantly impacts on social, financial and personal aspects of life (http://www.bio-medicine.org/medicine-news-1/Adult-ADHD-significantly-impacts-on-social--financial-and-personal-aspects-of-life-8417-2/)

The Milwaukee study, ongoing since 1977 (with the most recent follow-up conducted from 1999 to 2003), is an observational longitudinal study that looked at secondary lifestyle outcomes of 158 children who had been diagnosed with ADHD and, as adults, either continue to experience symptoms or no longer have the disorder at the age of 27, compared to a community control group of 81 children without ADHD who were followed concurrently. The Milwaukee study found that the adults with ADHD were approximately three times as likely when compared with the community control group to initiate physical fights (30 percent compared to 9 percent), destroy others property (31 percent compared to 8 percent) and break and enter (20 percent compared to 7 percent).

As an organization dedicated to providing information and resources to adults with ADHD, we are excited to see such attention paid to this disorder, said Evelyn Polk-Green, MS, Ed., ADDA President-elect and adult living with ADHD.


The reason why these findings are so important is that they help to inform people that ADHD is not just a childhood disorder, but in fact, a disorder that may affect multiple aspects of adult life and should be properly diagnosed and treated. This research also reinforces the need for formalized and validated criteria for the diagnosis of adult ADHD and may play a significant role in the development of this diagnostic criteria and the addition of it to the Diagnostic and Statistical Manual of Mental Disorders.

{End Quote}

Ohh and there is a name and address of some one they can ask more questions

Contact: Liz True
elizabeth.true@porternovelli.com
212-601-8173
Porter Novelli
Source:Eurekalert

ADHD Study Supports Research On Significant Impacts On Social, Financial, Personal Aspects of Life (http://www.emaxhealth.com/37/19206.html)

Approximately 7.8 percent of all school-age children, or about 4.4 million U.S. children aged 4 to 17 years, have been diagnosed with ADHD at some point in their lives, according to the CDC. ADHD is one of the most common psychiatric disorders in children and adolescents. The disorder is also estimated to affect 8.1 percent of adults, or approximately 9.2 million adults across the U.S. based on a retrospective survey of adults aged 18 to 44, projected to the full U.S. adult population. ADHD is a neurological brain disorder that manifests as a persistent pattern of inattention and/or hyperactivity-impulsivity that is more frequent and severe than is typically observed in individuals at a comparable level of development.

{End Quote}


Adults with ADHD (http://www3.interscience.wiley.com/journal/120754232/abstract?CRETRY=1&SRETRY=0)

KEYWORDS
ADHD • Child psychiatry • Adult psychiatry • Psychiatric diagnosis • Stimulant medication • Dopamine

ABSTRACT

Abstract: Attention-Deficit Hyperactivity Disorder (ADHD) is a common, genetically transmitted neurological disorder, with onset in childhood, probably mediated by decreased brain dopaminergic functioning. The first author was one of the earliest to describe the persistence of symptoms into adulthood. Prevalence and natural history data suggest that of the 3 to 10% of children diagnosed with ADHD, one- to two-thirds (somewhere between 1 and 6% of the general population) continue to manifest appreciable ADHD symptoms into adult life.


This paper describes how ADHD in adults can be readily diagnosed and treated, despite resembling or coexisting with other psychiatric disorders. The Wender Utah diagnostic criteria address adult characteristics of the disorder. Informant and patient interviews and rating scales are used to determine the psychiatric status of the patient as a child, make a retroactive diagnosis of childhood ADHD, and establish the current diagnosis of the adult.



Stringent diagnosis is key to determining effective treatment. Dopamine agonist stimulant medications appear to be the most effective in treating ADHD. About 60% of patients receiving stimulant medication showed moderate-to-marked improvement, as compared with 10% of those receiving placebo. The core symptoms of hyperactivity, inattention, mood lability, temper, disorganization, stress sensitivity, and impulsivity have been shown to respond to treatment with stimulant medications. Non-dopaminergic medications, such as the tricyclic antidepressants and SSRIs have generally not been useful in adults with ADHD in the absence of depression or dysthymia. Pemoline is no longer appoved for use in these patients, despite early favorable reports. Appropriate management of adult patients with ADHD is multimodal. Psychoeducation, counseling, supportive problem-directed therapy, behavioral intervention, coaching, cognitive remediation, and couples and family therapy are useful adjuncts to medication management. Concurrent supportive psychosocial treatment or polypharmacy may be useful in treating the adult with comorbid ADHD.

{End Quote}

~All Underlining in Source Quotes added by Me~

They can buy this book talked about here New Book --"ADHD in Adults: What the Science Says"-- one to ask your library to buy (http://www.addforums.com/forums/showthread.php?p=633937#post633937)

Surly the dept of wtf ever has fifty bucks! I used the initial post for the book discussion to come up with the key words to look up the studies I presented here - That is the only way I can even spell the words right = dyslexia sucks some times.


All the damn department of wtf ever has to do is find a computer the internet and google !!!! I did this in about 45 minutes ,I have severe dyslexia and an annoying cat who wants attention.

The only way they couldn't figure out there are studies indicating ADD continues into adulthood is if they don't want to - any one who can operate a computer has access to studies validating ADD continues into adulthood.

I am not sure if their IQ is that low or they think yours is :mad: either way Coiln I join you in being completely annoyed with them!

sarek
09-03-08, 02:14 AM
Maybe the date of this response is 1978 instead of 2008. It certainly reads like it's 30 years out of date. Since then, medical science has advanced quite a bit.
I also taste a mild condescending tone in this response, like talking down to one of Her Majesty's Most Loyal Subjects(slight overkill on the capitals there).

The government sure knows best what's good for you.

Colin
09-03-08, 05:45 AM
1978 lol :)

well ive writen a reply, but need to get someone else to go over it.

i think il just use the consensus for now, all the other stuff is less sensational.
all the other stuff is single studies wich alnoe are not sopersuasive. however there are also mata-analysis wich are pretty indesputable.

its ironic that the website he gave me a link to is the place that encouraged me to write to my mp in the first place.

oh btw sorry for linking to another forum, i didnt think it was bad at the time , although i can see why ;).
some forums dont alow links at all without permision which is a bit restrictive for someone with adhd, i got used to this being more open.

theres a few uk based adhd forums ive been on and ofc the uk part of this forum, I feel it would be good if we all got together and decided to promote links to eachother. obviously it would only be fair if each forum had a link or alowed links to the others, rather than just one. it was quite a while before i stumbled upon this uk section here. its not often i discus something on more than one forum, except for this issue and the thread about how an adult makes a cup of tea (typicialy british issues lol).

InTheMoment
09-09-08, 11:59 PM
If you read the draft NICE statement (see http://www.nice.org.uk/guidance/index.jsp?action=byID&o=11632#keydocs), you will find it comes out very clearly in favour of accepting ADHD in children and adults and that both can be medicated for by GPs with Ritalin/Concerta, Dexedrine and Straterra (not unfortunately Adderal as its not even licenced in UK).

The statement is not that well written and has many inaccuracies and prejudicial statements but at least it finally accepts Adult ADHD exists and can be treated. The most irritating part to me was the view that most ADHD comes with conduct disorder too. When it is so hard to get any help for ADHD in the UK at all, it fairly inevitable that the majority seen and treated to date will have been the most extreme cases - the hyper-naughty boys. A dreamy inattentive girl wouldn't even be considered!

Anyway the NICE findings are due out this month and should be a pretty positive and significant development. I guess we will see some silly press coverage but I think all publicity is good publicity on this.

doiadhd
06-21-09, 11:58 PM
just looked at the date and i think that all of you have had an impact!
still **** but it must be better than before!;)