IGNITE - This community has shaped me deeply.

Posted by ImproveCareNow™ on May 05, 2020

From her home office, Catalina spoke clearly and with great conviction, delivering her narrative directly to…her computer screen. Many of us have become accustomed to hearing Ignite Talks delivered to a packed plenary room at our in-person Community Conferences – and the effect these personal stories have is often palpable. Though it was not the original plan, Cat’s words flowed from her location in North Carolina across hundreds and even thousands of miles, reaching ImproveCareNow community members as they joined our first-ever Live Online Community Conference from their homes and offices. While the distance between was indeed great – Cat’s words drew us in close and (as Ignite Talks tend to do) reignited the passion we all feel for the work of ImproveCareNow - of improving health and care for kids with IBD. And from across the miles, the effect of Cat's words were still palpable:

“Incredible Cat!! Words do not do justice to what you are conveying to all of us - the village of ICN!”

“Inspiring for us all! Makes you want to try even harder!”

“You are incredible Cat!!! Your strength and advocacy is inspiring!!! THANK YOU!!!”

“I'M CRYING”

“You remind us why it is so worth it to keep fighting and working. Thank you!”

“Cat gives me chills.”

*stands up and claps*

“Really beautiful. As a caregiver, I feel your passion and share your sense of purpose. Very well done.”

Experience Cat’s Ignite Talk:

The full transcript of her talk is below:

On the other end of the line, I could hear someone putting potatoes in the oven. Sitting in my Honda Pilot on a dark night in February of 2017, I tried my best to discern the mishmash of voices. Conversations about toolkits and jokes about one-ply toilet paper were interspersed with the clear sound of someone eating dinner. Was this the group of advocates my doctor had urged me to join? These kids who mosaicked discussions about going to professional conferences with cheap poop jokes?

What I didn’t know, however, is that I was listening to the (sometimes) unintelligible voices of some of the strongest people I would ever meet; people who would be the gateway into the most reliable and welcoming community I had ever stumbled across.

Through all of the PDSAs, PVPs and 90 day goals, sometimes it feels like the true impact that ImproveCareNow (ICN) has can escape the foreground. As day-to-day QI activities take priority, we can forget the impact that ICN has on both individual patients, as well as on our sense of community. Community feels especially important now, as we sit in our respective, haphazardly arranged home offices. As we troubleshoot video conferencing and try to quiet our dogs down, I want to take this time to bring that value back to the forefront -- to remind us why the network and the work we do as a part of it matter.

I was one of those kids who needed ImproveCareNow.

When I was diagnosed with Crohn’s disease at 10 years old, my immigrant family received little education about a disease they had never heard of. My mom, seeking community, stumbled across online forums that did little more than highlight worst case scenarios. When biologics were seemingly my only treatment option, she discovered Exclusive Enteral Nutrition (EEN) herself. As I completed multiple courses of EEN over the next eight years, I would never see a dietitian and never learn that the formula I was subsisting off of was not nutritionally complete. Although I often described myself as a “broken machine,” I would never see a psychologist who specialized in chronic illness. Surgical residents burst into my hospital room at 6 am the morning following my ileal resection, but no one would notice that I had virtually no pain relief from the morphine I was being given until two days later.

Over the course of the last 13 years living with Crohn’s disease, I have come into contact with dozens of families who have had similar experiences to mine. Beyond the difficulty of grappling with a chronic illness, patients and families have historically been made to navigate a healthcare system that doesn’t provide them with the multidisciplinary, patient-centered care they crave. Well-meaning parents desperately seek information from research that’s often unintelligible and doesn’t answer their questions, while patients receive medical and emotional support through 20 minute stints in clinic offices.

These difficulties were the reason I became involved in ImproveCareNow. I could not stand to think that another patient would experience the same shortcomings in care that I did.

I was tired of wondering why nothing ever changed -- why the medical care I received over 10 years seemed constantly plagued by the same problems. ImproveCareNow gave me an avenue to make sure that the next ten years didn’t maintain the status quo. Over the last three years, I’ve seen first-hand the impact that this network can have on the patients we serve, both in terms of direct patient interaction, as well as from all the behind-the-scenes work that keeps the network focused and running.

If I had been cared for at an ICN site, I would have experienced far fewer shortcomings in care.

Every Tuesday, I attend weekly ICN meetings at UNC Chapel Hill. We regularly review patients who have been determined to be at risk through the [ICN] registry, or who have been hospitalized. Throughout the lists of patients that we review, it’s difficult to ignore the impact meetings like these could have had on my care. Had my name been listed eight years ago, someone may have realized that I needed to see a dietitian. They may have noticed the impact that years of EEN was having on my mental health and would have reached out regarding seeing psychology. Perhaps someone may have stepped into my hospital room and given my mother resources that would have served more to offer a sense of community than to terrify her.

If I had been at an ICN site, I may have had the chance to speak to someone who was going through the same things I was.

In September, our ICN coordinator emailed me and asked me to speak to one of their patients in the infusion room. It was her first day of school, and she had developed psoriasis all over her face. I could identify -- for the last couple of years, my psoriasis has taken over more of my mental space than I care to admit. She was a little shy, but as I pulled up a rolling stool to talk to her, I could tell through the way her shoulders relaxed that she was relieved to have someone who understood.

Without ICN, I may have never met her, and could have never eased her mind a bit by telling her that there was someone out there who identified. This is the kind of difference that the ICN community makes.

Behind the registry’s charts and graphs, indicating the number of patients off steroids or in remission, are individual patients whose care is being improved every day. These patients are more likely to see a dietitian or a psychologist. Decisions regarding their care are informed by work done by teams at over 100 hospitals around the world. Knowing that ICN exists allows me to feel more certain that patients like me are receiving the care they need and deserve.

There is immense value, too, in how ImproveCareNow provides us with a sense of community. It seems like every ICN call I’m on is a different assortment of all of the people I’ve spoken to over the last three years. Although I’ve only met these people in person six or seven times, there always seems to be something to check in about. Have you moved? How are your kids doing? Over the past week, I’ve been speaking to COMBINE sites for my full-time job as we check in. There’s no need to formally introduce myself -- on every call, there seems to be at least one person I’ve shared an elevator with at a conference or had a previous discussion with over the phone.

ImproveCareNow has managed to take hundreds of people from across the country and make us feel as connected as coworkers sharing a bunch of cubicles.

The Patient Advisory Council (PAC) has felt like a particularly special community to me. I remember reaching out to them when an infection landed me in an emergency room. We share both plans to make new resources and selfies from the bathroom. Late at night, I’ve talked to PAC members who were struggling with mental health or with unemployment. Somehow, it doesn’t matter how old we are. Our age range spans nearly 10 years, and yet we still manage to feel like peers. At conferences, we sit in suites making jokes, some with ostomies showing, or others with heating pads on their stomachs. On calls, we congratulate each other for achievements as seemingly insignificant as going to class and as momentous as moving to college. As things change daily, I was most upset about missing out on my last in-person conference. I longed for the opportunity to see my people again, a group that has become an adopted family.

It is difficult to express how grateful I am for ICN. This community has shaped me deeply and given me as much QI knowledge as a master’s degree. ICN has altered what I consider to be my purpose and has provided me with hope for the future of all the patients I’ve worked with and shared waiting rooms with. As we continue to work through our to-do-lists and attend one conference call after another, I hope we can remember the impact that each hour we set aside to do this work has. I cannot overstate how important this network has been to my life, and I deeply appreciate the work each and every one of you do toward its mission.

💚💙

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