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Of Villainous Eels and Amazing Strength (or “I’m sexy and I know it!”)

When my daughters were younger, they loved The Little Mermaid, or more specifically the Disney version, with beautiful Ariel, crazy-scary Ursula and, most saliently, her two evil, ever-present eels, Flotsam and Jetsam. In Disney's tale they are menacing, conniving, willing to terrorize beautiful and sweet creatures of the sea. Our girls used to squeal and scream, grabbing my wife and me for safety whenever Flotsam and Jetsam showed up on screen.

 

 

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Story of Self | Noel Jacobs

My mother said that when I was in first grade, she knew I would be a psychologist.

I came home from school one day, excited to have my first-grade pictures!  Remember those big sheets that you had to painstakingly cut into little squares? I was proud of my pictures and couldn’t wait to pass them out.

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Learning about changing health care systems – My story

 

As a young person growing up in Washington, DC in the late 60s and early 70s, I was immersed in the importance of changing the system.  My father was a lawyer and my mother a social worker.  My family placed a strong emphasis on taking responsibility for making things better.   Several years later, when I decided to go to medical school in New York City to train at Bellevue Hospital, I wanted to experience medicine in one of the country’s biggest urban public hospitals. During medical school, I also decided to join the National Health Service Corps as a way to provide service.

 

Fresh out of residency, I was eager to put into practice all that I had learned.  However, I wasn’t able to start my work in Corps in Rochester, New York immediately. I found a position with the Elmwood Pediatric Group while I waited for my service to begin.  After I began my service, I continued to spend parts of days and weekends at the Elmwood Group.

 

There was a striking difference in the environment of the private practice and the neighborhood clinic. At the clinic, appointments were scheduled twice a day in blocks, once in the morning and once in the afternoon. Mothers and children waited for hours in a cramped waiting room devoid of pictures or toys.  At the Elmwood Group, we saw many more patients, equally complicated cases, in a schedule that ran on time.  At Elmwood, I would see poor kids with asthma whose disease I could manage much more effectively than I could at the health center because it was easier to develop an effective relationship with patients in a system that ran efficiently and that communicated a sense of caring. In short, I was struck by my inability to produce the same outcomes (even though I was the same person) working in two different systems. It was simply unavoidable that my effectiveness as a clinician depended on the system in which I was working.

 

I also discovered that by focusing on what patients need and want, I could change the system. After I was named director of pediatrics at the clinic, I took what I learned about efficient office operations at the private practice, did some reading about queuing theory and succeeded in implementing a scheduling system that improved the experience for patients and increased the number of children for whom we cared by about 50%, with no increase in staff, while reducing the number of no-shows.  From this experience, I also learned that changing the system affected not only the patients but also the doctors caring for them. It was so much more satisfying for all the physicians to see patients in a system that ran efficiently, communicating to our patients that we respected their time.

 

My appreciation for the importance of the healthcare delivery system deepened when Corps transferred me to a storefront clinic the south central neighborhood of Los Angeles.  By the time I left Rochester, I had realized that I needed to have more skills than I had learned in medical school if I was going to change the system. I wasn’t hesitant to share my “big ideas” for better healthcare delivery with my partners of the Elmwood Group. One evening after work, one of them put his arm on my shoulder and said, “don’t become one of those researchers who just studies why those of us in practice don’t use evidence or don’t provide the best care for our patients. You better figure out how to be useful.”

 

This was a defining moment.  Over the past 20 years, I have studied and learned about how to use and apply improvement science and systems engineering to enable doctors, nurses and, now patients work together to make health care the best it can be, applying the knowledge we have today, and discovering and creating innovations that will make care better tomorrow.  That’s why I’m proud to be part of the ImproveCareNow Network.


Happy 'Don't Fry Day'!

No Fry Day

Much in the same way ImproveCareNow gets excited for World IBD Day (May 19th) and Crohn's & Colitis Awareness Week (December 1 -7), the National Council on Skin Cancer Prevention is excited about Don't Fry Day - which is today, the Friday before Memorial Day Weekend.  A day that is set aside as time to raise awareness and hopefully prevent skin cancer.

 

 

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Parenting sick kids

[EDITOR'S NOTE: Learn more about the parent behind this story here.]

Parenting a child with any chronic illness is, to put it lightly, a challenge.

I strongly believe that IBD is “different,” but that’s a topic for another day.

Other parenting topics that we will save for another day include advocating for your child with regard to healthcare and (key the “Schoolhouse Rock” music) Knowledge is Power!

In fact, today we’re not going to focus on your child or children with IBD at all.  We’re going to concentrate on your other children.  So, this post may not apply to you at all, and if it doesn’t, move along, move along, there’s nothing to see here.

When I speak to parents, one of my messages is, “We tend to treat our kids with IBD differently, don’t we?  Maybe we let them out of chores.  Maybe we let them do things that we don’t let their siblings do.  Right?”

[At this point, every parent’s head is bobbling up and down.]

Then I say, “It’s OK.  It’s natural.  And there’s nothing you can do about it because you’re always going to have a tendency to want your sick child to get the most out of the time that he/she feels well.  But, remember that you have other children.”

Oh, yeah.

This is far from an exact science, and specific family dynamics will affect how you navigate through this part of your challenge.  But here are a couple of tips.

First and foremost, you must remember and be sensitive to the fact that each of your kids are dealing with all of the same every day issues that all kids deal with, and you need to be there for them as best you can.  While it may be the last thing you want to discuss and you may deem it “unimportant” given that you are awaiting medical test results, your daughter’s bad experience on the bus merits your attention.

Second, you must let your other children, in an age appropriate manner, know what is going on.  I was 8 when I was diagnosed with UC, and my sister, KK, was then 6.  KK recently confided in me that she thought I was dying.  My parents never had the, “Han’s tummy is sick, but he’s going to get better” discussion with her.  My parents needed to understand that her life was turned every bit as upside down as everybody else's by my illness.

Chores around the house are also tough.  It’s not like Sela and I ask our kids to go down to the creek with a washboard and scrub their clothes, but setting and clearing the table, putting stuff away, taking out garbage, caring for (no codename needed) Izzy the dog—those are things we expect from our kids.

Here’s the tightrope.  We’re not going to ask Jed or Tink to do any of these things when they don’t feel well enough to do them.  But we also don’t want our healthy kids to carry more of a share of the load.  The last thing we want is for Elly Mae to be “mad” at or “resent” Jed or Tink for being sick.

I remember a discussion that I had with Tinkerbell when Jedediah was at his sickest—in and out of the hospital.  Tink was 14, and Jed was 12.  I went to speak to Tink and I said, “Don’t think for a minute that your mom and I don’t recognize that you’re getting short shrift.  We absolutely recognize that we haven’t been there for you as much as we would have liked, and we’ll make it up to you.”

Tink’s response still brings tears to my eyes.  “Dad, it’s OK, Jed needs you.”

I figured we must be doing something right.  But most of all, it was just another example of Tink’s awesomeness.


Story of Self | nocolon33

I was 8 years old when diagnosed with ulcerative colitis in 1975.  That was the dark ages.  Non-flexible scopes.  Months and months without a diagnosis.  Wait!  There’s still that months and months without a diagnosis problem.  That’s something we’re working on fixing.

After a fairly mild disease course for 20 years, my UC worsened significantly in 1994 resulting in a full colectomy in 1996.  Guess what, though?  This blog isn’t about me.

 

 

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Story of Self

Richard Colletti, MD Network Director of ImproveCareNow

ImproveCareNow Network Director and Physician Leader for the Vermont Children's Hospital at Fletcher Allen Health Care - Dr. Richard Colletti - in his own words. 

Like other pediatric gastroenterologists who care for children with Crohn’s disease and ulcerative colitis, I try to learn as much as I can about my patient, as much as I can about the disease, and to care about both.  But the care that a patient gets doesn’t just depend on how much a doctor knows, or how much a doctor cares—it depends on the system in which the doctor works.

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World IBD Day 2012

World IBD Day 2012 Logo

May 19th is set aside as a day to raise awareness about two chronic illnesses that together affect millions of people worldwide.

 

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Hello.

Welcome to LOOP | the official blog of ImproveCareNow.

We all have a voice - patients, parents, clinicians and researchers – and we want to share our stories, ideas and innovations with you. Through LOOP, we hope to further our impact in the pediatric Crohn’s disease and ulcerative colitis (IBD) community.

ImproveCareNow is an established network of pediatric gastroenterology care centers – 36 care centers, with 6,800+ patients in our registry and 300+ clinicians participating in the Network. We have raised the bar for the standard of care in pediatric Crohn’s and colitis. Our remission rates speak for themselves. ImproveCareNow kids' remission rates have climbed from 50% to 75% in the first five years. Our end goal is to spread ImproveCareNow to all kids in the U.S. with IBD – so that many more can feel well instead of sick.

Thank you for visiting LOOP. We are officially launching May 19th in alignment with World IBD Day 2012. This is your invitation to learn more about ImproveCareNow and IBD; and to join us in improving the care and outcomes for all kids with Crohn’s & colitis. Spread the word!

Contact us if you have a story to tell, a topic for our experts to blog about, or a question or comment share. It’s always great to hear from you!


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