Isabel’s Misdiagnosis May Save YOUR Life

Jason Maude wants to save your life.

He lives in the UK where healthcare is a given, like a public education. If you are a citizen, you get healthcare. But remarkably, stories of misdiagnosis are identical to those in the US. It seems that regardless of whether healthcare is an entitlement or insured, misdiagnosis still happens.

In 1999, Jason’s daughter Isabel, then age 3, was misdiagnosed and nearly died. From a “normal” case of chicken pox, she developed toxic shock syndrome, then necrotizing fasciitis, a med-speak term for flesh eating bacteria. But the doctors didn’t see it. They didn’t diagnose it until it was almost too late. Instead, because Jason and his wife trusted their intuition, and relentlessly pursued the REAL answers, Isabel eventually got the diagnosis and care she needed. Today she is a healthy, happy 11-year-old because of her parents’ diligence.

Now suppose your child almost died – or DID die — from a misdiagnosis. How would you feel? What would YOU want to do?

Most of us would be beyond angry, and rightfully so. Most of us would make sure we did everything we could to punish those providers who had killed, or almost killed our children.

But not Jason and his wife. Instead, they decided to do something to make sure nobody else’s child, and his/her parents and loved ones, would ever have to live through such a horror.

How? Jason approached the doctor who had been in charge of Isabel’s care — the one who was ultimately responsible for Isabel’s corrected diagnosis — and suggested the two of them collaborate on putting together a system for doctors worldwide to use to make sure all diagnosis possibilities were being considered for any given medical problem. The doctor, Joseph Britto, MD, readily agreed.

Since then, they’ve made it happen. A huge database of every diagnosis framed by all its possible symptoms — and vice versa — is available to medical centers and doctors’ practices worldwide. It’s being used by the likes of Yale-Newhaven Children’s Hospital, the University of Virginia Health System, and other esteemed — and very wise — hospitals and doctors, both in the US and the UK.

Yesterday I had the honor of speaking with both gentlemen. I think we could have talked for hours and hours because we have so much in common and we agree on so many fronts! Jason and I have almost identical advocacy stories, of course. We agreed that turning our anger into something positive for others is incredibly cathartic.

And I learned, and confirmed so much! Such as:

  • Did you know misdiagnosis is the 4th leading cause of death in the US?
  • Did you know most doctors jump to judgement about your diagnosis and frame it so tightly in their minds that they dismiss other possibilities? (Just ask Jerome Groopman.)

So as you can imagine — I am ecstatic that this system exists now. I wonder whether it could have saved me from my misdiagnosis odyssey? One can only hope.

And I do have a few questions about its use — one that will remain unanswered for awhile, and one that was answered, like the answer to a prayer.

Question One: is there any way to overcome the objections of the the way-too-many-doctors who see the use of such a system as stepping on their toes, to transcend their egos for its use? If I try to answer this question myself, I think the solution will lie in showing them it can save them money because there will be fewer lawsuits (yes — money — the root of all healthcare in the US). Please note I haven’t mentioned that they would be interested in using it to save lives.

Question Two: is there any way patients can influence use of the Isabel system? or use it themselves?

Both gentlemen were quick to tell me about the beta-testing of a system for us patients to use — the Isabel Symptom Checker — that we can use and share with our doctors. Yes!!

Now if you read my work regularly, you know I don’t, in general, support the use of online symptom checkers. I think the ones that currently exist are more problematic than helpful. You’ll either decide what your problem isn’t important enough to bother the doctor (and it might be life threatening!) or you’ll decide you’re dying of a rare disease (when you aren’t very sick at all.)

So why would I support the use of an Isabel-related system for consumers? Because it is intended entirely to COMPLEMENT your work with your doctor — not replace the doctor’s opinion. It is intended to help you and your doctor expand lists of possibilities — differential diagnosis options — not get in the way of your work with your doctor.

Until the patient-consumer version is available? Patients who are lucky enough to live in areas where hospitals or doctors currently use the system can choose to see those doctors. Find the most current list of Isabel users here.

So once again, my belief that everything happens for a reason is confirmed. I’m so sorry Isabel and her parents suffered as they did. But I’m thrilled that Jason took his anger in the direction he did. As the Isabel Diagnosis System saves more lives, others, too, will realize what a blessing their odyssey was, too.

I’ll keep you, my loyal readers, posted on the launch of the Isabel Symptom Checker. It’s most definitely an idea that’s time has come. Patient Empowerment at its finest.

Learn more:

Link here to the Isabel Healthcare System website.

Link here to an article in Forbes Magazine.

Link here to an article in the New York Times.

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Trisha Torrey
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