A Room Full of Ostomies
A Room Full of Ostomies – The First Patient Champion Meeting
I am not sure what I thought joining a group of ostomates would result in. Asking these people, who you have only communicated through phone calls and emails with, to fly from their homes all the way here could really result in anything. What I found, though, was that getting together a group whose main mission was to advocate and support other patients, was like getting a group of old friends together who had not seen each other for a long time.
Part of my role as the Patient Champion Coordinator is to recruit and manage our Patient Champions. I support them through their care of other ostomy patients. In their personal lives, they have so much experience supporting them, whether it be through support groups, hospital visitations, or social media. Our first meeting of the Patient Champions was to help nurture their skills as advocates and to train them on the role of being a Patient Champion.
I was nervous and unsure of what to expect with the arrival of our Patient Champions. Would they be friendly? Would they understand what we were asking them to do? Most importantly, would they still want to be a Patient Champion when we were done?
“I joined because I never knew others with an ostomy and never had support growing up… I want to be able to provide others with the support I never had.” – Rhonda Hayes, Patient Champion
My anxiety vanished as each Patient Champion arrived, and with each greeting came a hug. It felt as though we were old friends separated by long distances. Conversation came easy and as a group, we all were engaged in conversations about our ostomy bags. It was like an impromptu support group!
“Anything I shared they genuinely cared and listened and made me feel even more supported and not alone than I already am.” – Kristen Furey, Patient Champion
It soon came time to get down to business, where Karen (head of the Patient Champion Program) and myself began our meeting’s agenda. We went through thorough education about the Alfred Alert sensor and its application. We spoke about what our roles were as Patient Champions, focusing on our unique ability to not only sympathize with patients, but also empathize. We worked on role plays as patient and Patient Champion, and ran through scenarios that may present themselves.
“Stoma nurses are amazing but they just don’t know like someone who has been there and done that. I want to be there for people and let them know I get it!” – Nicole Bratton, Patient Champion
Through our two-day meeting, each Patient Champion presented ideas and experiences that in that short time built up the Patient Champion Program immensely. They shared their thoughts and struggles with the sensor to assist the technology team in bettering it. They shared experiences with their own ostomy surgery and previous encounters they had supporting new patients getting one. They created ideas for what they wanted to share to others through videos and written posts – this post being just one of them.
To be perfectly blunt, Karen nor myself expected the success that we had during that meeting. We were both so inspired by these amazing people willing to work to help other patients. Each of us left not wanting to go, and eagerly awaiting the next biannual meeting in August. Until then, I know that each of these people will work hard in supporting ostomy patients, whether it be with their 11 Health technology or with their ostomies in general. I am proud to be a part of this group and to see how much our program will grow by next August.