Medication Misinformation – A Chance For Advocacy
ByThis week has been a busy week in the news for ADHD. A British TV show seems to have misinterpreted the conclusions from the multimodal treatment study. This has led to a media uproar about the fact that ADHD medicines don’t seem to work. (You can watch my youtube video on the ADHD Medicine story here).
Today, I saw an article in the British (online) Press, that an inquiry will be requested into how ADHD is diagnosed and treated in the UK. You can read the story here.
My initial reaction, I must admit, was frustration and concern. I was frustrated thinking that they are over reacting to mis-information, and concerned that this would interfere with the help for people with ADHD in the UK.
But then I thought about it…
The truth is… this may lead to more resources and funding for behavioral and non-medication treatments for ADHD. That is a good thing! (Since the best treatment for ADHD is a combination of non-medication and medication approaches).
So, I now consider this positive, and a chance for advocacy.
My suggestions for our British friends (who are advocates for ADHD) is to get actively involved in this process so that the members of the inquiry (if it happens) will have the proper information. This will help children, teens and adults with ADHD.
It would be a tragedy if this inquiry led to more widespread misinformation and restrictions on the access to medications. Hopefully, this will lead to a better understanding of ADHD and access to more resources and comprehensive treatment.
Please share your thoughts and comments below.
Dr. Kenny
I am a member of a group of adults with adhd who have started a campaign to raise the profile of adhd in adults. And we are very disturbed by the Panorama programme because it is already very difficult for adults with adhd to get any kind of treatment in the UK, and the Panorama programme has not helped.
We are actively trying to get involved in the advocacy process (not easy considering we all have adhd). We do have a website, and are now trying to reach out to others, and we are preparing a complaint about the Panorama programme to be filed with the BBC as well as other media outlets. Do you have any tips or suggestions for us?
Hi Susan,
I applaud your desire to get involved and to work to get the right information out there.
I suggest that you start with others who have experience in the area that you are in – i.e. other support/advocacy groups.
In Canada, there is CADDAC – http://www.caddac.ca
In the US, there is CHADD – http://www.CHADD.org
I like to start with the scientific facts – i.e. if you are able to put together a news release/article which summarizes the newest research that 4.4% of American adults have ADD, and that ADD is a real disorder, etc. that may be a good start.
Does anyone else have any suggestions?
Dr. Kenny
Hello Dr Kenny,
Thanks for replying and thanks for the suggestion about writing a news release/article. We will do that.
We’ve checked and we appear to be the only advocacy group for adults with ADHD in the UK, so we are breaking new ground here.
To make things even more interesting we are collaborating electronically. We all met online.
Our formal response to the Panorama programme is almost finished.
All suggestions gratefully accepted.
Good perspective on a bad situation! Thanks for the positive spin on this!
I was diagnosed with ADHD as a child, but for some reason I was not given treatment, 5 months ago I started taking Methylphenidate, and it has changed my life! If they withdraw approval of it, or make it harder to get, I dont really see how I will be able to opperate in ‘normal society’, I was on the verge of a breakdown already when I started it!
The UK media, and probly everywhere else, is well known for its sensationalist approach to things, they frequently make it up as they go along, sometimes subtly, sometimes due to misunderstanding, and sometimes just out right lies, getting away with it by using clever language.
Is your group an open group Susan? I’d love to join if so! I have very little resources available at the moment for ADHD, so any help I can get is most welcome!
Hey John,
Sorry about the delay. Yes it’s an open group. We’d love to have you join us.
Hi,
Our website in the UK specially for adults with ADHD is at http://www.aadd.org.uk
Garret
Medication Misinformation – A Chance For Advocacy…
This week has been a busy week in the news for ADHD. A British TV show seems to have misinterpreted the conclusions from the multimodal treatment study. This has led to a media uproar about the fact that ADHD medicines don’t seem to work….
Medication Misinformation – A Chance For Advocacy…
…
Medication Misinformation – A Chance For Advocacy | ADD ADHD Blog.com…
This week has been a busy week in the news for ADHD. A British TV show seems to have misinterpreted the conclusions from the multimodal treatment study. This has led to a media uproar about the fact that ADHD medicines don’t seem to work….
Medication Misinformation – A Chance For Advocacy…
This week has been a busy week in the news for ADHD. A British TV show seems to have misinterpreted the conclusions from the multimodal treatment study. This has led to a media uproar about the fact that ADHD medicines don’t seem to work…
Medication Misinformation – A Chance For Advocacy | ADD ADHD Blog.com…
This week has been a busy week in the news for ADHD. A British TV show seems to have misinterpreted the conclusions from the multimodal treatment study. This has led to a media uproar about the fact that ADHD medicines don’t seem to work….
i have been trying for years to be heard but no one listens, i have all the classic symtems of adhd and had them when i was at school in the 1970′s but was not realy reconise then, now times have moved on it is a pitty people, such as doctors do not take adults seriously, i just wish that i could at least be more calm in myslef and concentrate on a task, i have very high ability to do things but can never finish them, i have never held a job down but had decent ones and i seriously belive that ifi had treatment i would see a better me, even my 3 yr old son has the classic hamarks of the condition but no one listens, he is nearly 4 and i worry he will turn out like me, and to me that is unfair when there is help. i live in the dudley area west midlands, geting a referal is amost impossible to none exsistance, can anyone please help?
Trevor,
Thanks for writing. Unfortunately, it is very common to have this type of experience.
I suggest you speak to your primary care doctor, and see who you can be referred to. If your doctor has no one to help with adult ADHD, find the nearest medical school and ask for the department of psychiatry. Contact them and ask who is doing work with adult ADHD. This may get you someone.
Also, you can use CHADD’s professional directory:
http://www.chadd.org/Content/CHADD/Support/ProfessionalDirectory/default.htm
Please feel free to join http://www.adhdworld.com There are a number of adults with ADHD who share what they’re going through.
Also, check out http://www.add.org. This is an organization for adult adhd/add. They can be very helpful.
I hope this helps!
Best,
Dr. Kenny
Your GP now has to refer you to someone who can assess and treat adult ADHD. It is in the NICE guidelines. Tell them to check this if they don’t believe you:
http://www.nice.org.uk/guidance/index.jsp?action=byID&o=12061