Tuesday, October 11, 2011

Stop Dr Brenda Carey

[The situation has changed after writing this post, and Brenda Carey has changed her website. Please see here.]

A reader has pointed me to this rather outrageously marketed website Stop Stuttering by Dr Brenda Carey. A highly irresponsible marketing strategy if you ask me: to suggest that you stop (a marketing place holder for cure?) stuttering with her, even for kids. The sentence "Stop Stuttering with Dr Carey" reads in parents and pws's mind as "Dr Carey can make you stop stuttering".She falls below the ethical standards that I would expect of a therapist.

I find her advertising blatandly scientifically misleading the visitors to her website. She writes that
"This means that it has most research evidence to support its use" and "The Lidcombe Program is a highly effective treatment for children who stutter" citing Jones, M., Onslow, M., Packman, A., Williams, S., Ormond, T., Schwarz, I., et al. (2005). Randomised controlled trial of the Lidcombe Programme of early stuttering intervention. British Medical Journal, 331, 659-661. 
But guess what? She has forgotten the negative follow-up study, but she is in line with her Lidcombe folks: CLAIM SUPPORTING EVIDENCE BUT IGNORE BAD EVIDENCE. Whether they do it on purpose or are just very bad scientists: I leave this to your opinion. But the fact is that no-one ever about talks the follow-up study of the flawed original Lidcombe study: Three of the children (16%) who had completed treatment successfully had relapsed after 2 or more years of speech that was below 1% syllables stuttered. That's about the recovery rate! Not to speak about those that could not be contacted again and many other methodological weaknesses. But you could argue that those who would not have recovered anyway have lighter stuttering symptoms. Fine but no cures proven as far as I see. No stopping of stuttering.

She further writes that The Lidcombe Program can reduce stuttering to very low levels, on average, in 17 hours. Sounds a bit like saying: You can reduce your weight by 10 kilos in one month. Yes, you can. So ladies tell me: Did you keep the lost weight off?

And the worse is her psychological pressure on parents with visual images of a little scared child.

Mark Onslow and Ann Packman, are these your high ethical and scientific standards that you have taught Dr Brenda Carey?


Anonymous said...

84% of kids without relapse is not a "negative" follow-up study, it is a very good outcome, and thus Lidcombe is correctly summarized as the treatment option with the most and best outcome data.

Tom Weidig said...

that is not true, because

you ignore the larger statistical error due to small sample size

you ignore the significant percent of drop-outs that could not be contacted any more

you ignore other biases of the study

you ignore measurement adaptation


Dopamientje said...

sadly enough she is one of many who falsely claims to stop stuttering...

Leys Geddes said...

It is misleading, but does she actually claim that she can, or will, stop you (or your child or whoever) stuttering? By calling the site 'Stop Stuttering'she will probably argue that she is merely reflecting a widespread hope, not promising a universal cure. There is a dentist near me who has a large sign outside his practice reading 'Teeth For Life'.

Tom Weidig said...

@Leys: Legally speaking, she can probably get away with it, as you argue.

But I am talking about the effect the sentence "Stop Stuttering with Dr Carey" has on parents and people who stutter. Namely that their mind reads "Dr Carey can make you stop stuttering".

Leys Geddes said...

The BSA recently complained to the UK Advertising Standards Authority about a UK-based site which has the URL stutter-cure - which, most people would probably agree, is 'worse' than stop stuttering. I'm waiting to see what will happen. I don't know if there is an equivalent organisation in Australia which might be interested in Dr Carey's URL - but I will check this out. Incidentally, this is also a good time to point out that there is still no equivalent organisation in the States which acts on behalf of US consumers and others to ensure that advertised claims are legal, decent honest and truthful - unless someone knows something I don't know. You may remember that when we asked ASHA to help us reduce doubtful claims, worldwide, their now famous response was 'As I’m sure you know, when the product is not life threatening, advertising in the United States has a history of “buyers beware.”' However, Peter Reitzes drew my attention to a recent statement by Arlene Pietranton, the Executive Director of ASHA, affirming her organisation's commitment to 'a robust code of ethics' (see http://www.asha.org/uploadedFiles/ASHA_migrated/Pietranton-Dues-Renewal-Ethics-Code-Letter.pdf). This is very good news indeed and I'm sure that many professionals and stutterers in the States will want to support her efforts.

Anonymous said...

I don't know who you are or what's your background but it is quite plain and simple after reading your blog that you have misconstrued the meaning of "Stop Stuttering with Dr. Carey" or any other speech pathologist for that matter.

If you are smart enough you will readily comprehend that by saying "stop stuttering with a particular doctor's name does not equate to the statement "the doctor can make you stop stuttering".

Tom Weidig said...

So what exactly does it equate to then?? Please tell us!!

The issue is how the viewers read it, and they will likely read it as "this doctor promises me that she can make me stop stuttering".

Anonymous said...

@Anon(16:16): You are making a distinction without a difference. As Tom and others have pointed out, it is completely irrelevant whether the claim is that the doctor stops one from stuttering, or one stops stuttering by virtue of working with the doctor. In either case, a false claim is made: that stuttering will *stop* after receiving treatment from a "professional". A false claim such as this is plainly unethical, and Tom is absolutely right for pointing it out.

- Michael L.

Tom Weidig said...

@Michael L: Good point! If you ever want to write a guest post, let me know!

I would say that statements like "work effectively with", "reduce your stuttering" or "change your perspective" are borderline acceptable.

Statements like "Work on your speech with", "consult a", "Improve your communication skills", "Give your child the best care", "Benefit from Dr Carey's experience" are acceptable to me.

sachin said...

I am surprised that people still find it in their heart to defend such unethical practices; may be this is why they hide behind "Anonymous" because they know they are supporting something patently unsupportable.
Every act has to be judged by intention- and in this case, it is: attract people and parents by giving them false hope. Sadly, world is full of people who will claim anything to make a fast buck. PWS and their families too are to be blamed for this- their gullibility and refusal to do a proper research..
Thanks Tom! for questioning such ads..

Judy Kuster said...

Tom, I would suggest you remove this from your website. Ora told me about it. He also posted a question on the Prof is In. I wrote to Brenda privately about his post on the Prof is In and she responded to me privately, thanking me for expressing my concerns and then posted "Ora, I do thank you for your helpful comments. I certainly did not intend to mislead, and will be changing the wording of my site and its address promptly (as soon as I have the tech support). Regards, Brenda Carey"

Anonymous said...

Thanks for the kind offer, Tom--I'd love to. You have a great site, and you put out information that's important to the entire stuttering community (i.e., PWS, researchers, and therapists). As soon as I get some work stuff out of the way I'll definitely get in contact with you.

Regarding Judy Kuster's post, it's great and encouraging news that Brenda Carey became informed of folks' legitimate concern. That's a perfect example of what I mean by the crucial role of blogs like yours: to draw attention to issues that hurt PWS, and give us a voice to challenge and correct these issues.

If anything, I think that's an argument for you to keep this post up: it's important and inspiring for people to know that speaking up can make a positive difference. Of course, when Brenda makes the ethically responsible changes to her website, you can add that as an update acknowledging the correction.

- Michael L.

Judy Kuster said...

Michael, I disagree that "what Tom did (and often does) is a perfect example of .... the crucial role of blogs like yours: to draw attention to issues that hurt PWS, and give us a voice to challenge and correct these issues." If Tom had written his concerns to Brenda and if she didn't respond, had brought in another person or two, and she still didn't respond, THEN writing what I see as a "character assassination" might be in order. If an offense or problem can be resolved without potentially hurting another person's reputation, that is what should be done, in my opinion. Maybe I'm just too "Minnesota nice."

Anonymous said...

I have another perspective. There is no cure for stuttering and every speech pathologist knows that.There is also no cure for cancer and the medical community knows that. Do you think a doctor that advertises that he can cure cancer will stay a doctor for long? Do you think speech pathologists should be held to the same standards?

I think character assassination is not enough. I think a criminal investigation and revoking her degree are in order.

Anonymous said...

Judy, I strongly disagree. As the anon comment above proposed, if a health practitioner makes false claims about a treatment that "stops" cancer, or stops mental illness, or stops multiple sclerosis, an ethically responsible person--whether a member of the media or just an individual observer--would absolutely have a moral obligation to point this out. The same goes for stuttering. The dangerous precedent which has been set (and insufficiently addressed) is that it is somehow less serious to make false claims about treating stuttering. I find this outlandish and morally reprehensible.

And, quite frankly, having been both a Minnesotan and lifelong Midwesterner, I find it rather repulsive to use "Minnesota Nice" as a rationale for shaming others for confronting unethical behavior. Very disappointing.

- Michael L.

Ora said...

To the most recent Anonymous ("I think a criminal investigation and revoking her degree are in order") and Michael L. ("unethical behavior"):

Let's take a look at Brenda Carey's comment: "I certainly did not intend to mislead, and will be changing the wording of my site and its address promptly (as soon as I have the tech support)"

People make mistakes or questionable judgments all the time. But well-intentioned, reasonable people reconsider their decisions when they're pointed out. It seems to me the fact that Brenda Carey readily and quickly agreed with the criticism suggests that this was not intentional. People should be allowed to correct their mistakes.

Judy Kuster was not shaming others for confronting Brenda Carey. (In fact Judy did it herself.) She was disagreeing with people for their manner of the confrontation.

Why do you (and Tom) prefer to use highly negative, inflammatory characterizations such as "unethical", "outrageously marketed", "highly irresponsible", "criminal", etc.?

Michael L: You suggest that an ethically responsible person has an obligation to confront unethical behavior. Judy obviously agrees, and that's just what she did. She just did so differently. In this case, "Minnesota nice" got results.

Tom Weidig said...

@LastAnonym: I removed part of your post because you wrote "WHAT SHE DID IS A CRIME". In the future, please express your opinion and do not generalise and give reasons like "I believe she committed a crime, because A, B, C"

The Australian lawyers have already tried to silence me once!

@Ora: Just to clarify that I did not call her behaviour criminal, but unethical in my opinion. I wrote what I have in my mind. These are my opinions. Judy did not get the results. I did because of the public pressure.

Once Brenda Carey has changed the website, I will change the post.

Tom Weidig said...

A comment by Anonym that I had to censor.

She did change her site, but then you have to question what she's telling parents privately. I think she should still be investigated. The masses have oversimplified ideas of stuttering, essentially that with the right training anyone can recover. That is absolutely untrue and unethical speech therapists play upon their naivety.


Ora said...

@Tom - You wrote "Just to clarify that I did not call her behaviour criminal".

When I mentioned "criminal", I was referring to the comment by Anonymous of October 22, who wrote "I think character assassination is not enough. I think a criminal investigation and revoking her degree are in order."