Please feel free! It's ok to use my name. I'm glad my story spoke to so
many people!
 
Unfortunately, I may have more soon. My husband's nephew was in a wreck
about two weeks ago, and has a serious brain injury. He is still in ICU
and will be there for a while. He can move all his digits and speak a
few words but they don't know much yet. Between him and my mom, we're
learning a lot about the health care system in Arkansas firsthand. I
guess the good news is -- not all the news is bad. There are some
wonderful, talented and incredibly dedicated people in this state, in
spite of Arkansas' (somewhat deserved) reputation.

________________________________

From: healthliteracy-bounces at nifl.gov
[mailto:healthliteracy-bounces at nifl.gov] On Behalf Of Susan Centner
Sent: Monday, April 21, 2008 1:19 PM
To: 'The Health and Literacy Discussion List'
Subject: [HealthLiteracy 1936] Re: help



Dear Janet,

 

Would you allow us to use your story/example when talking about health
literacy? 

We can either do so anonymously or with full disclosure. It illustrates
a good point.

 

We are interested in personal stories that help define some of the
issues relating to health literacy.

 

Thanks for your consideration

 

Susan

 

 

Susan Centner, Project Director

MAHEC Digital Library

1101 Duane Avenue

Rolla, Missouri 65401

(573) 368-6350 - cell

(573) 458-7282 - office

(573) 364-8972 - fax

www.maheclibrary.org

 

 

 

 

From: healthliteracy-bounces at nifl.gov
[mailto:healthliteracy-bounces at nifl.gov] On Behalf Of Janet Sorensen
Sent: Wednesday, March 26, 2008 10:43 AM
To: healthliteracy at nifl.gov
Subject: [HealthLiteracy 1867] help

 

Since I'm not quite as formally educated or experienced on this subject
as the rest of you, I have a question from a personal as well as
professional perspective.

 

As I'm sure many of you have experienced, I'm often handed printed
materials in the course of my own health care (or a loved one's), or
asked to fill out forms that I am tempted to rewrite, redesign and hand
back to the health care provider or staff member. As a writer, I've
seriously considered doing this (but waiting until my or my relative's
health care crisis or issue has been resolved). Is there a graceful,
persuasive and nonoffensive way to make suggestions to health care
providers regarding, say, written materials, preop and postop materials
and processes, and so forth? Anything that has worked or specifically
NOT worked for you in winning support from health care providers or
others who are in a position to make seemingly simple changes? I don't
want to come across as a know-it-all because, for one thing, I don't
know it all, and also because such an approach or attitude would not
serve our purpose.

 

An example -- during my pregnancy, I was referred for a diagnostic
ultrasound because of my "advanced maternal age" and because I had
decided against amniocentesis. After the ultrasound, the high-risk OB
again tried to talk me into amnio and again I politely refused. He said
the ultrasound looked ok but would be read in more detail later. A few
days later, I got a form letter. The first four paragraphs talked about
Down syndrome, what it is, risk factors, "markers," and so forth, and
how women with "advanced maternal age" are at greater risk. In the fifth
paragraph, it explained that my ultrasound was (fill in the blank)
negative for all of the Down syndrome markers. But by then I had already
assumed my unborn child had Down syndrome and was freaking completely
out. I ran the Gunning-Fog on it out of curiosity, and it was higher
than 12th grade, besides just being badly written and badly organized.

 

When I mentioned this experience to my own personal OB (not the
high-risk guy) and said that I thought the letter could have been
written more effectively for the audience, he said it's too bad these
uneducated people can't read nowadays. I agreed and said it's also too
bad some educated people can't write nowadays. It occurs to me now, that
probably wasn't the best response for building collaboration and
support...I'm blaming hormones.

 

I'm asking now because I just went through a grueling pre-op process at
an academic medical center with my 76-year-old mom, and we had to fill
out the exact same detailed form at five different clinics, although
they have electronic records there. I had to help an old man in one of
the various waiting rooms, who could not bend his arm and had no one to
help him write. And that's just the beginning. But I will stop now.

 

Any words of advice on how I could effectively offer my own, for the
sake of my blood pressure if nothing else? I realize health literacy and
health communication are huge and evolving fields of study, and we need
scholarly papers and more research, but we also need front-line
fighters. Or maybe guerilla is a better term. Polite and respectful, of
course. Any response will be appreciated. thx jps

 

Janet Sorensen

Web Writer

Arkansas Foundation for Medical Care

501-212-8644

 

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