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Post by annie on May 2, 2014 20:42:27 GMT
Thanks ever so much for following this up and we wait with baited breath for the written response!!
I know a lot of you on here are worn down with the enormous amount of effort it's taking/taken to get to see a "specialist" ADHD Consultant, but if you can just use some of your energy to write to your local MP about the appalling lack of provision with regards to the implimentation of NICE Guidance (2008), then maybe this combined effort will actually make politicians more accountable to those who elect them.
I know it's a big ask. However, it needs more of us, across the country to use our influence to ensure mental health services are fit for purpose. At the moment they're not. Not sure at all that ADHD should fall within the remit of "Mental Health" but there you are, that's where we're at. The fact that so many MH professionals are not equipped to recognise how the mental health issues that can and do impact on the presentation of someone with unrecognised/ untreated ADHD, is an absolute disgrace and that needs to change.
This website has to be much more than a place where individuals can come and ask for advice/support - helpful as that may be. For me, it has always been about helping people to become more informed about their condition (and there's a huge amount of research information on this site - all thanks to roland) and feeling empowered so they don't just accept what ill informed professionals tell them - you should expect and are entitled to more than that!
I am deeply concerned about the way ADHD is presented in the media. It's very alarming to have Ian Duncan Smith and Jeremy Hunt pro-acitively invite someone into this country to support the notion that neglectful and "unattached parents" are the root cause of poorly performing children/ young people who appear to present with ADHD symptoms. Those ch/yp need to have their disability recognised and be given the support they need. In my experience the vast majority of parents work extremely hard to try and support their children, often against very powerful professionals.
I sincerely hope Rosie Winterton and her colleagues will give us a response in the near future. Is there anything to be gained by writing to IDS and JH asking them to explain the lack of provision in this country?
To everyone on here, get your letters off to your local MP.
annie
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Post by Deleted on May 3, 2014 6:15:58 GMT
To everyone on here, get your letters off to your local MP. annie roland, annie and @planetdave. Many thanks for your update, this is truly appreciated. I still think we need someone to set out a template letter to send out to MPs. There will be some who feel they don't have the expert knowledge, wherewithal and personal confidence at their disposal to correspond accordingly and I think such a template might even encourage those that don't sign up to the forum to participate positively with this aim. It could even be published within the resources section of the main site as well as this forum
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gift
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Happy with today just as it is...
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Post by gift on May 14, 2014 18:58:01 GMT
Great to see rebuttals to "ADHD does not exist" from Dr Russell Barkley and Dr Edward Hallowell based on science and a measured review of the book. Here are my favourite quotes. "The book is a travesty of ignorance about and propaganda against ADHD, a disorder which has more than 10,000 articles in science journals attesting to its validity and numerous adverse effects on people's lives," says Russell Barkley, author of six ADHD-related books and a recognized international ADHD expert. Dr. Edward Hallowell, New York Times best-selling author of Driven to Distraction, and a recognized authority in the field of ADHD, agrees: "No responsible scientific authority says ADHD does not exist. Saul is blatantly misleading people to sell his book." The short but thoughtfully reassuring Newsweek article is "Richard Saul Says ADHD Does Not Exist. Not Everyone Agrees" www.newsweek.com/2014/02/28/richard-saul-says-adhd-does-not-exist-not-everyone-agrees-245584.html?utm_source=May+2014+Newsletter&utm_campaign=May+2014+Newsletter&utm_medium=email.
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Post by karenkaos61 on May 28, 2014 16:44:36 GMT
Statements made about ADD/ADHD not being 'real' by supposedly knowledgeable people don't really bother me so much. I KNOW it's real. Because it's MY reality. And it's ultimately not a creatively cute and ditzy life choice at that.
It's when you try to describe what it's like to someone and their off hand response is "oh everyone feels like that/does those th
THAT'S when it gets frustrating.
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Post by purplepower on May 28, 2014 17:48:34 GMT
The problem is the implication of people saying things like that. How do you think people get their perception ADHD doesn't exist? From people like that. They do damage. IF there was a strong response from ADHD organisations and expert clinicians to comments like that that the media picked up, I'd be less concerned but we don't need any negative momentum to build up. Isn't life hard enough as it is?
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Post by purplepower on May 28, 2014 18:07:10 GMT
Keep getting error messages on posts.
I was going to add that last year my boss thought that ADHD was something I could just take a pill for. After a difficult conversation between him and I, he decided to do some research. Sure he found out information about ADHD BUT he also commented on the detractors out there and that definitely influenced his perception of ADHD. Does he believe ADHD is real now? I honesty don't know.
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Post by Deleted on May 28, 2014 20:45:55 GMT
The problem is the implication of people saying things like that. How do you think people get their perception ADHD doesn't exist? From people like that. They do damage. IF there was a strong response from ADHD organisations and expert clinicians to comments like that that the media picked up, I'd be less concerned but we don't need any negative momentum to build up. Isn't life hard enough as it is? There is a strong response - but it's not newsworthy so doesn't get equal press. The negative opinions also pander to the tastes of their readership (spanking CURES all paediatric mental conditions and their parents are BAD PEOPLE who don't care enough to cure them). Most of the press is owned by crusty old disciplinarians with a right wing bias - only sensational stories about ADHD get through and mostly those stories are negative. It's a stacked deck.
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Post by purplepower on May 28, 2014 21:03:30 GMT
The problem is the implication of people saying things like that. How do you think people get their perception ADHD doesn't exist? From people like that. They do damage. IF there was a strong response from ADHD organisations and expert clinicians to comments like that that the media picked up, I'd be less concerned but we don't need any negative momentum to build up. Isn't life hard enough as it is? There is a strong response - but it's not newsworthy so doesn't get equal press. The negative opinions also pander to the tastes of their readership (spanking CURES all paediatric mental conditions and their parents are BAD PEOPLE who don't care enough to cure them). Most of the press is owned by crusty old disciplinarians with a right wing bias - only sensational stories about ADHD get through and mostly those stories are negative. It's a stacked deck. Which is why I said that the media picked up
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Post by Wavey75 on May 29, 2014 0:39:26 GMT
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Post by Deleted on May 29, 2014 11:29:49 GMT
www.dailymail.co.uk/news/article-2046924/Parent-child-ADHD-Have-free-car-1-5bn-taxpayer-funded-scheme.htmlThis is another article that's not really painting a positive picture on ADHD. Although the focus is on the cars, it seems to purposely aim for ADHD only and borders discrimination - the smaller font paragraph at the bottom clarifies the facts they omitted from the main article, presumably as it would have made lessor an impact. I can't believe there's someone commented that we should all lend our support to IDS, though written in 2011, that's still pretty rare! Wavey75 Reading that link - it's the most incredible negative propaganda (ie bullshit represented as fact). In the notes (small print at the end) they say for which individuals must be declared virtually unable to walk.that means the entire artice about ADHD children being awarded a car is actually about ADHD children who the government has declared virtually unable to walk, but happen to have ADHD too. So they're not lying - but are so close to it that it makes no difference.
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Post by fuzzywuzzy on May 29, 2014 15:27:24 GMT
Thanks for adding that article Wavey75 I didn't need to read it....unfortunately already had that 'pleasure' Opposing voices, if they are being 'voiced', are simply not being heard Joe Public won't be aware of 10,000 medical articles....all they will see is the overwhelming 'case' against it, and the treatments, all over the papers, tv, and internet...... wish we could do more....don't know where to begin..... there was a 'rumour' on here that lots was going on behind the scenes?
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Post by Wavey75 on May 29, 2014 21:35:39 GMT
I grew up with older parents than my friends at school, so the attitudes I have had are somewhat out of date in general, including my impressions of mental health, which is basically the ol' "it's all in your head, man! if you go around telling people you've got mental health issues they'll think your crazy and no one will want to know you!" that's the sort of mentality in my house growing up, along with "A beer sessions solves everything
As a newly diagnosed ADHDer myself, this is all knew - the idea of ADHD being labelled as naughty kids syndrome and that ADHD isn't a real illness - technically it's not, it's a disorder and I think it's technically a recognised disability in the UK.
I'm still a little confused when I read a lot that ADHD is also co-morbid or something like that as I've no idea what that means.
The other article linked is teaching anyone how to fake an ADHD diagnosis, which I find quite annoying because it means that other people will think that we are all fakers and seeking handouts.
I wish to christ I could give them ADHD for a week or 52 - just so they could know for themselves.
The article about the motability cars though is trying to paint the picture that these parents with naughty kids syndrome are getting a free car from the government for a child with an over-active disorder and if I didn;t know wht I know now, I'd be distgusted with it.
But, the thing is, that the £200 a month lease car isn't subsidised at all. The motability car scheme was a huge corporate fleet hire department that just grew and grew into a slef contained organisation that now buys the cars at the same rates as any other dealer would (usually 40 - 60% less than the advertised forecourt prices) and the car is rented over a set 3 years and then the car is taken back and sold.
So, basically a brand new car that would sell for £15k to mr and mrs joe public would be leased for £200 per month, including insurance, breakdown cover and tyres. £7,200 over 3 years, which basically pays for the car that then has a street value of around £5- to £7k. if you subtract half for losses and keeping the lights on, that's a profit of on average £3,000 per vehicle, or a grand a year.
With around 250,000 cars leased each year, that's alot of money that the government has comming in from the disabled and their families.
The article on ADHD and cars also doesn't clearly explain that many ADHD kids also have other issues that would look like they had issues to the average bystander.
Maybe that's the problem with ADHD - we don't look weird enough with it. lol
Wavey75
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ralff
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Post by ralff on Jun 4, 2014 14:06:06 GMT
There is a simple way to test if so and so is an expert in such and such a field. It amazes me how few newspapers go to the trouble of taking these steps. First login to scholar.google.co.uk/ and then search for the name of expert and see what they have published and how many times they have been quoted by others in peer reviewed scholarly articles. This method quickly reveals that one of the "US leading neurologists" (according to the Times and Daily Mail) Richard Saul has not written or been quoted in any recent articles in the field of neurology let alone ADHD and Bruce D Perry is an authority on childhood trauma but has not published (or been quoted) in any articles on the subject of ADHD/ADD, and as ADHD/ADD is not caused by trauma, he is also outside his field. Compare a search result for "Prof Russell Barkley ADHD" or "Nora D. Volkow ADHD" or "Xavier Castellanos ADHD". It is interesting that there are no relevant peer reviewed articles claiming ADHD does not exist. This is a claim made by and for the press. It might be worth keeping in mind that there is a very well funded and highly motivated group that specializes in discrediting all forms of psychiatric medication.
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Post by fuzzywuzzy on Jun 4, 2014 15:31:45 GMT
Good points ralff....thank you for that
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Post by Deleted on Jun 4, 2014 16:14:23 GMT
It might be worth keeping in mind that there is a very well funded and highly motivated group that specializes in discrediting all forms of psychiatric medication. That we never mention by name (thank you ralff for not doing so). It wouldn't cost them much to ruin this forum so please nobody post anything that a google search would flag up to them.
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Post by Wavey75 on Jun 4, 2014 16:55:37 GMT
I was just about to post asking who these people are!
If a PM or an email can be sent to me, I would be very interested in knowning who this group is - so I can give them a wide berth!
Good points about the google scholar searches, but the aticle was about motability cars for people with ADHD, very clever wording when you think about it as they're not named as ADHD experts!
As a newbie to ADHD, I'm pretty fecked off that any group of people can tell me there's nothing wrong with me, doesn't stop me from wishing they were right though.
I just had to get an energy boost to get some work done and I had 4 expresso's in 20 minutes and it gave me an hour, before I started to feel tired again!
Wavey75
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Post by fuzzywuzzy on Jun 4, 2014 17:10:46 GMT
Ooh ooh....me too! Tell me....tell me now! No.....like the true adders we are, we've gone A,M, B, A, Z....and all round the houses....so originally it was a post about a recently published book called 'ADHD Does Not Exist', an ignorant MP celebrating the book....and loads of ignorant articles about it and so on...the outraged Daily Fail article was some time before....although it could just as easily be today EDIT.....Totally agree with your comments
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Post by fuzzywuzzy on Jun 4, 2014 17:17:30 GMT
Edit to self... that was a slightly different thread in similar vein..... this was yet another 'Dr' spouting his views of denial....celebrated by said MP! Will ill get there in the end.....maybe.....possibly.....sometime soon.....ish.....hopefully.....ever......never.....
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Post by Wavey75 on Jun 4, 2014 18:47:33 GMT
OMG!!! I just did a quick search and found LOADS of articles on blogs, etc on how ADHD is just something made up by big-pharma or the association of psychiatrists, etc. All from people who are members of a group that seeks to reveal the truth, ironically. (too many jokes here, but it would give them away!)
I want to post a link, but just can't - it's really bad to read it though, especially as it's completely biased writing too.
I'm now wondering what the world would be like if the 3rd reich had of had the internet... hmm.
Wavey75
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Post by shapes on Jul 4, 2014 16:06:06 GMT
Did anyone write a letter and get anything back? (I didn't write one was just curious)
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mrbuildy
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Post by mrbuildy on Sept 7, 2014 12:00:13 GMT
These sorts of sweeping statements I tend to find more amusing than insulting.
For one, it's a statement made when the individual in question hasn't even bothered to look at what it is, what causes it, or even any of the means/methods that exist to show the differences between the neurones in the brain of someone with ADHD and someone who does not. It's the whole a little information is a dangerous thing, especially when the initial source is word of mouth.
The whole thing is made even more hilarious because it is a baseless statement made by someone who doesn't have ADHD, who hasn't looked into the available information, studies, research papers, etc, when someone who does have ADHD would have checked their sources (unless of course the later is more of a personal thing on my part).
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Post by Deleted on Sept 12, 2014 10:43:40 GMT
OMG!!! I just did a quick search and found LOADS of articles on blogs, etc on how ADHD is just something made up by big-pharma or the association of psychiatrists, I think the reality, from what I'm reading between the research lines, is that eventually AD(H)D will be redefined into further categories and sub-categories so plays into the hands of the skeptics, detractors and the politically expedient who don't want to pay for increasingly costly treatments. The fact that this organisation (via annie and roland) still hasn't received a response is just shocking.
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Post by Deleted on Sept 12, 2014 14:06:55 GMT
I think the problems here are running much deeper.. this is where philosophy (I've recently discovered Godel..but; close brackets!) philosophy become important, day to day, big time.
Definitions.. they inherently don't work for us.
Disease.. disorder.. they are all definitions, which all evaporate.. evade capture.
I know it's annoying when people bring this kind of stuff up, but i think this is a big point, which we - and in particular here The Media - are stuck on.
so my "rule ~set".. which instantly becomes dangerous (and obsolete - like any other, so I went easy on myself, and didn't get trapped rigorizing it (Ed's note: I gave this a wide berth..this is the concept of guilt... giving the "truth' a recklessly wide berth)) --There are several genes implicated --The way in which individuals' brains/minds are organized can sometimes be usefully put into rough groups, along certain lines (eg; NT, ADHD, autism?, etc) --Some of these groups are prone to certain problems/issues.. some of which respond to treatment, which may improve to a greater or lesser extent the level of the individual's function and happiness etc. --We need to be sensible --Many people (convenient to think of myself here, lol) have lived life so far with these conditions/disorders/differences.. and while trying to change the future (education etc) to match our "species"'s more biologically-based diverse needs (and culturally based too!)is most important.. it is important(?) to not leave behind those for whom this is partially irrelevant (eg lots of my friends and me, motherfuckers!)
--this organization has been treated unreasonably re this letter
I think a lot of what he says is good. I think he's a bit of a quack.. but I think we all have to be to a certain extent. I think this article is dangerous, however.
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Deleted
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Post by Deleted on Sept 12, 2014 15:34:53 GMT
I mean.. if you call cancer a "disease".. or the cold, or AIDS.. you're going to run into problems which are going to trap you for all of eternity, if you try to define it. It's the same with everything else (most other definitions on stuff which interests us.. wankers/philosophers (such as me) bring this up too much and are somewhat addicted (as everyone knows).. but "they" (THEM) are getting away with "murder" through this loop-hole.
MPs (in particular, perhaps) should be forced to consider their roles and definitions and etc, and present them to us when done. They would be shot down.. uavoidably.
...hope to god no-one kills anyone over this.
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Post by Deleted on Sept 12, 2014 21:49:41 GMT
I think I'm probably getting pretty contentious here.. I hope for opinions.. judgements (as I see it, we shouldn't mean bad things by "judgement" - judgement is essential..we need to make decisions/judgements about people and things in life, and without judgement, we act at random... because we need to have things stored, memory.. without judgement we're trying to use pure logic (which won't work, if you use nothing else).. so, we act stupidly. Judging badly, and on superficial things leads to a dis-harmony with reality.. which causes, among others, people being misunderstood.. if you misunderstand someone, if they interact with you, the image of reality in your head causes what comes out of your head (eg what you say to them).. is not as beautiful as it should be. Anyway.. oh yes, If anyone objects in any way.. please say.. I'm trying to figure out where to write atm.. trying to look for reasons to speak (write) - problems with isolation. anyway.. I think ADHD is real.. but I think we need to be clear on what we mean by "real".. I think too many of us are losing arguments (in the public - or the Mail's - view of things) I say (and I dont think I am as alone as I imagine) that this is in no small part because argument is stacked.. when you use it outside pure logic (I think that's the gist of it anyway)
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Post by cr on Sept 12, 2014 23:04:12 GMT
Hi
Here's my thoughts, in no particular order.
1. ADHD symptoms are very real and very debilitating with a wide sphere of influence.
2. ADHD is almost certainly not a disease in the traditional sense.
3. Some GPs are hapless fuckwits.
4. Debating the existence of the addictive/pervasive underlying mindset that we affectionately call 'ADHD' is kinda pointless. Debating it with NTs is, frankly, hilarious. We only understand them marginally more than they tolerate us. Our green is their red. Their white is our black.
5. I believe every syllable we commit to threads, like this, iconify those who are determined not to help us. I also understand the explosive rage and indignation that can lead to these threads being created.
I can't remember if I made my point yet...
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