Why prospective ETS patients so often don't hear the full story, and the ongoing effort to change this

'CSmess' is an American professional and family man who moderates and regularly contributes to the Internet forum ETS and Reversals Discussion. He has had both an ETS and a reversal surgery. The reversal only made his side effects worse.

ETS and Reversals Discussion was set up in the early to mid-2000s by American Carole Edward, who lives with hyperhidrosis, so that ETS patients around the world who have had bad outcomes from the surgery can come together online, tell their stories, learn more about their side effects, support each other, discuss possible treatments for side effects, name their surgeons, discuss their legal options, and more. A key mission of the forum is also to WARN prospective ETS patients about the other side of the ETS story - the one the ETS surgeons don't acknowledge and don't want prospective ETS patients to hear.

The forum has members from the following countries:
Australia, New Zealand, the US, the UK, Canada, Ireland, Spain, Sweden, Norway, Poland, Chile, Peru, Thailand, Taiwan, Malaysia...and probably more countries. Users of the forum don't always reveal their nationality.

In response to a happy ETS patient who expressed the view that the forum overwhelmingly contains the stories and experiences of those who have had devastating results from their ETS surgeries, 'CSmess' wrote the following on ETS and Reversals Discussion.

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"There is a huge amount of published research showing that a very substantial percentage of ETS patients experience disabling side effects that dramatically lower their quality of life and diminish their health. Yet, you will not find a single testimonial from any of these thousands of souls published in any surgeon's brochure or on their websites. Furthermore, while many surgeons provide telephone numbers of past patients to prospective patients, they only hand out the numbers of the happy patients. The unhappy stories are swept under the carpet. Prospective patients get to hear only one side of the story.

"The only place where the voices of the many disabled patients can be heard is on forums like this one.

"In other words, lucky/happy ETS patients have a number of formal avenues to "spread the joy", but those who did not have good outcomes have only a self-funded Internet message board. Do a Google search on hyperidrosis or blushing cures and you'll get page after page of lavishly funded websites littered with glowing testimonials. Our puny little forum is but a whisper drowned out by thousands of bull horns that paint a one-sided and dishonest picture of the effects and risks of this surgery.

"Beyond providing a place for the testimonials that the surgeons won't publish, the ETS Reversals and Discussion forum provides links to the mountain of medical research findings that contradict the claims most of the surgeons make regarding the number, frequency and severity of adverse side effects of this surgery.

"Most people considering ETS surgery only hear from patients with happy outcomes. The surgeons make a concerted effort to make sure that remains the norm. And that ain't right. It ain't honest. So, the members of the ETS Reversals and Discussion forum seek to right this wrong, and provide to folks who are considering the surgery the information they won't get from their surgeons."

Please speak up!

This is another call for dissatisfied ETS patients of Dr Murray MacCormick to write to the Health and Disability Commissioner (HDC). The more complaints about this ETS surgeon, the harder it will be for the HDC to simply write Dr MacCormick an educational letter as a way of 'resolving' the one complaint against Dr MacCormick that they are currently investigating.

To add some perspective....Richard Stubbs, a liver cancer and obesity specialist here in NZ, who had been the subject of numerous complaints in relation to not obtaining informed consent, was recently fined NZ$100,000 by the NZ Health Practitioners Disciplinary Tribunal. He was also censured, and ordered to undertake a mentoring programme for 18 months and have a practice audit.

Was this a fair result? Consider this doctor's history of harming patients:

-He appeared before the Tribunal in 1999 and was found guilty of conduct unbecoming a medical practitioner.
-Five complaints were made to the HDC about this doctor between 2002 and 2004, mostly in relation to consent.
-Another two complaints had been made to the HDC by 2007.
-The case that brought him before the Tribunal most recently was one that found him guilty of of professional misconduct, failing to obtain informed consent, and failure to adequately document post-operative care. In this case, the male patient, 'Mr N', died in 2006, after an operation with Dr Stubbs.

So...this doctor contributed directly to a man losing his life, and has had at least eight other formal complaints made about him in less than 10 years.

And he is still practising.

He also tried, unsuccessfully, to get name suppression for himself and the hospital he works at (Wakefield Hospital, in Wellington), and tried to get out of paying the NZ$100,000 fine by claiming that most of his earnings went toward research and he kept only a small portion for himself. The Tribunal looked into this and stated they were "not impressed" with his evidence, and upheld the fine.

Disheartening and disturbing? Without a doubt. And it also highlights the fact that it takes a lot of noise before these medical professionals who harm patients again and again and again finally come to the attention of those who pull the strings.

I hope Dr Stubbs never treats another patient again. His name has been all over the media here.

Could the Kiwi ETS Group achieve the same with Dr MacCormick???

The latest on the HDC complaint.....

The Health and Disability Commission (HDC) have written to say they are now giving Auckland ETS surgeon Murray MacCormick the chance to respond to the issues raised in our complaint.

The HDC also said in their letter that they do not have the authority to make a doctor financially compensate a patient, or to stop a doctor from practising* (*I think only the Medical Council of NZ has this authority). However, the HDC also wrote in their letter that they will consider the other 'desired outcomes' we stated in our complaint letter.

Another update on complaint against NZ ETS surgeon Murray MacCormick

The Kiwi ETS Group heard from the Health and Disability Commission (HDC) today. It turns out that, for the last two months, the complaint submitted by our group on behalf of a Kiwi ETS patient has been with the HDC's legal team.

It's not as exciting as it sounds....the HDC's legal team were simply determining whether or not to consider the complaint as separate to an earlier complaint made by the same patient against the same surgeon.

Now that the HDC's legal team have concluded that this most recent complaint is a new, separate complaint (this had already been specifically pointed out when the Kiwi ETS Group contacted the HDC in writing in June....), the complaint has been returned to the HDC and Auckland ETS surgeon Murray MacCormick should be contacted by the HDC any day now regarding the complaint, if he hasn't already.

So, the process of investigating the complaint has finally begun.

We are a bit disappointed that it has taken this long - 2 months - for the complaint investigation process to get started, and more so that the HDC did not contact us at all during the last 2 months to simply let us know what was happening. Still, at least the ball is now rolling.

(Please refer to older posts to read more about the story beind this complaint.)