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Post by annie on Nov 14, 2008 9:00:18 GMT
Apart from being very committed to promoting the need for better services for adults with adhd, I am also very interested in what is currently happening to children's services.
I am involved with a local support group of parents who have children with adhd. A local support group in a neighbouring borough sent me information about an ADHD Roadshow coming to Newcastle today (it's also going to be run in Manchester and London) The topics being covered are: Sleep problems and ADHD Social and Emotional Issues of children with ADHD Intelligent Prescribing - enabling Parents to make right choices ( how this is communicated to parents)
All these topics are of particular interest to parents, so I duly registered for a place. Well last night I received an e-mail saying the Conference wasn't really relevant to me" it is targeted to prescribing physicians and we feel the content will not be very beneficial to you" but they hoped I would be interested in future events!!!
What an insult I have mailed them back pointing out, the Governments reforms of the NHS are geared to giving parents/carers more information, but in this instance it would appear the drug company don't feel it is necessary to have informed parents.
I'm furious
annie
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Post by roland on Nov 14, 2008 11:49:19 GMT
I don't blame you one bit Annie! It sounds arrogant and insulting, of course the conference will be relevant to parents!
Do you have details of the conference, because I'm thinking we should all try and register just to wind them up?
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Post by annie on Nov 14, 2008 12:47:21 GMT
Unfortunately the roadshow for Manchester is past but the one for London is on the 5th Dec. I did e-mail the person who sent me the info and she does know of one parent who has got a place - so hopefully I'll get feedback from her. If any parent in the London area is interested here's the web page to book www.sandstone.co.uk/ADHD-roadshowsannie
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Post by annie on Nov 14, 2008 16:02:37 GMT
Just to say the parent I thought was going, also got a phone call to say it wasn't relevant to her, so probably best for parents not to waste their time!!
annie
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goldie
Member's not posted much yet
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Post by goldie on Nov 14, 2008 18:45:54 GMT
Just to clarify The pharma companies cannot allow parents into meetings which they run. They have to work within a strict ethical code. At these meetings they also discuss their own medications and they cannot be seen to be marketing to parents. These meetings are specifically designed to train clinicians.
If a parent of patient attended one of these meetings they (the pharma company) would be in serious trouble
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Deleted
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Post by Deleted on Nov 17, 2008 16:10:33 GMT
Who is the University of Californias MIND institute equivalent to in the UK. Can't they put on a AD/HD seminar like Barkley did, but here in the UK with the countries best minds on AD/HD. Or has that already happened?
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Post by annie on Nov 19, 2008 17:40:42 GMT
Just to say I had a reply from the drug Co yesterday.
As goldie says they pointed out how strict the controls are on drug Co and how they were not permitted to involve patients in promotional events. I fully accept that. However (and there always has to be an however!) it was the manner of the first reply which annoyed me.
Anyway end of matter
annie
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Deleted
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Post by Deleted on Nov 30, 2008 20:38:50 GMT
dear Annie We need to fight for our children, the whole thing is a maze of people passing the buck. I have just had one of the most stressful weeks of my life trying to get medication for my daughter who is now 19 to keep her in Uni, who wont support her medication needs. On mass we have to keep fighting for our children and young adults I will making as much nuisance of myself until someone takes note. My intension is to write to my local MP. My daughter's plight is tragic, everyone has turned their back on her. I am incensed about the cloak and dagger approach for such young and often fragile people. Good luck
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Post by Letipeachick on Dec 4, 2008 14:06:47 GMT
Perhaps one of the parents on these boards has also a doctorate? The two aren't mutually exclusive...
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Post by roland on Dec 5, 2008 9:50:07 GMT
Letipeachick you are so right! They are not mutually exclusive, and doctors themselves can have ADHD.
What happens when a prescribing physician with ADHD is invited to one of these roadshows?
What happens when a prescribing physician who is also a parent of a child with ADHD is invited to a roadshow?
Would they have to turn down the invitation because of a conflict of interest and thus miss out on some training?
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