Sometimes the best way to accomplish the most is to get good heads together for conversation, brainstorming and more.  Some of those names we hear over and over again in the patient safety world were able to join forces at a picnic in Aiken, South Carolina, on July 4th.

Organized by Dianne Parker, the group was able to discuss safety initiatives and ideas, and remember those who have been lost due to medical errors.

The goal?  To make this world “independent” of patient safety violations — to save lives and stop the loss of them to medical errors.

Here are some of the dedicated folks who were able to make the picnic, all standing in front of the Consumer’s Union Cover America Tour Big Blue Bus:

Left to right: Curtis & Lisa Lindell, author of 108 Days, Houston, TX.
Helen Haskell, President, Mothers Against Medical Error, South Carolina
Kim Sandstrom, Mothers Against Medical Error, Ocala Florida
Dianne Parker, President, Patient Safety Advocates, Aiken, South Carolina
Lorin & Christine Jones, www.pamsjourney.org, Farmington, New Mexico
Dr. Ira Williams, author of First Do No Harm, Greenville, South Carolina

Missing from the photo is Sanjaya Kumar, MD, author of Fatal Care who was also in attendance.

………………………………..

Thanks to Lisa Lindell for sending the photo, and to all who attended for taking one more step toward awareness and solutions.  You are all fixers — and I appreciate that!

(Wish I could have joined you!)

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There aren’t many times that I am left speechless, but this is one of them.

If you are a regular reader of CNN’s Empowered Patient, offered each week by Elizabeth Cohen, then you know there have been any number of outstanding advocates featured. People who work tirelessly to improve our safety, access and navigation through the dysfunctional American healthcare system. Some are healthcare professionals, others are patients just like you and me. Many have lost someone to the system or have suffered a medical error.

This week Elizabeth highlighted six advocates and called them “Empowered Heroes,” citing the fact that each has taken a negative experience with healthcare to transform it into a way to help others. I am privileged to be among them.

Take a moment to read about the other heroes:  Victoria and Armando Nahum who lost their very healthy son to a MRSA infection and now work tirelessly to prevent hospital and community acquired infections, Dr. Tom Ferguson who built one of the first health websites ever created, and coined the term “e-patients,” Ysabel Duron who recognized the need for cancer support among the Latino community, Gilles Frydman who founded ACOR, the Association of Online Cancer Resources, and Michael Cohen who, early on, recognized the problem of prescription drug errors and founded the Institute for Safe Medication Practices.

It’s an honor, a privilege, and in many ways I believe “I’m not worthy!” Well. OK. I’m just not so worthy as so many others. Because this list is only six people.  There are dozens of advocates who work on behalf of all of us to improve the system.

I can only say thank you for the recognition, and — now you know why I am left speechless.

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Here’s the good news:  Heather does not have SPTCL.

Here’s the bad news:  Heather does have another type of T-cell lymphoma called CGD-TCL, cutaneous gamma-delta t-cell lymphoma.  Also written with Greek letters:  cutaneous γ/δ T-cell lymphoma

To say that both Heather and I were shocked is an understatement.  If you read my post a few weeks ago, you know that she contacted me when she had a lump biopsied, and was told she had SPTCL (subcutaneous panniculitis-like T-cell lymphoma.)  Thing is — like in my case four years ago — she has no other symptoms.  Further, since then she has had additional tests, including a CT scan that shows no abnormalities, and blood work that is clear.  So yes — shocked.

And, as if it’s not bad enough that she’s been dealt this blow — listen to this: when a review from the NIH is requested, the protocol is for it to be submitted by her primary care doctor or her oncologist, then for the NIH to report back to the doctor who requested the review.  That doctor is then responsible for getting the results back to Heather.

Heather’s biopsy was submitted to Dr. Jaffe at the NIH in early June. When she hadn’t heard anything back by yesterday, almost a month later, she sent an email to Dr. Jaffe just asking when she could expect the results.

Turns out the review was completed June 18 — two weeks ago! — and returned to Heather’s doctor…. and yet no one — not the primary care doctor OR the oncologist has contacted Heather with the results.  Still.  Today.  Not a single phone call.  No one!

The reason Heather knows about her diagnosis is because Dr. Jaffe was considerate enough to attach it as a pdf to her reply email.

So we’ve learned a couple of lessons from Heather’s odyssey so far…. first, to be assertive about reviewing a diagnosis.  Yes — it turns out Heather was misdiagnosed, too — although in this case, she does seem to have lymphoma.  But if she had not pursued a review of her diagnosis, she would be treated for the wrong lymphoma.  Then what?

Second — when you don’t get test results back — go looking for them!  And don’t take no for an answer.  You can be polite, but you need to be assertive.  Had Heather not gotten in touch with Dr. Jaffe, she would still be waiting for the word.  And as far as her doctors are concerned — she’s still waiting!  (I’m having trouble stopping myself from calling these medical bozos what they are.  Oh.  Did I call them that?)

CGD-TCL is just as rare as SPTCL, no doubt about it.  It will be impossible to find a doctor to treat it who has experience with it.  I’ve suggested to Heather that she find a doctor who is willing to research and learn alongside her — a true partner for this unusual disease.  Easier said than done, I’m sure!  But what a blessing if she can actually find one.

If you’d like to follow Heather’s odyssey, I’ll keep you updated here… or better yet…. check out her new blog.  Then, keep Heather and her family in your prayers.

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I spent a few hours yesterday with a delightful team of people who YOU should get to know, too.

Meg, Pauline and Blake are traversing the country this summer in a big blue bus (they call it the blue beast!) in the Cover America Tour. Sponsored by Consumers Union (the Consumer Reports folks) it is intended to help you tell your story of whatever run-ins you’ve had with the American healthcare system through videos that will be shared with others.

The goal? To make the case that the system is broken, needs fixing, and to get some real dialog going on how to do that. We’re past the lip service part. We need action!

So here’s how it works, and how you can participate:

If you have a story to tell that highlights the breakdowns in the system — a medical error, a misdiagnosis, an inability to afford your care, an insurance nightmare, or whatever it might be…. link to the map of the Cover America Tour and see if they will be anywhere near you. Meg tells me the map will be updated every couple of weeks as they continue making their plans. Their plans change every day as they hear from new people who want to be interviewed — and if you have a good story that should be included, they’ll stop in your town to meet you.

Here’s how to let them know who you are, and why you want to participate: Share Your Story

The tour runs from now through mid-September, so keep an eye. I will update my email list every couple of weeks on upcoming locations. If you would like to be included, then sign up to receive notices. (If you are already on my list, you don’t need to sign up again.)

And if you are contacted? how about coming back here to let us know — we’ll link to your story online.

Safe travels and godspeed to Meg, Pauline and Blake. It’s a wonderful thing they are doing — committing months of their lives, away from their loved ones, to help us all.