Every once in a while, something exciting happens that is totally unexpected. My week was certainly made when something unexpected and exciting happened to me! Tuesday’s emails brought with it great news from the United Ostomy Associations of America (UOAA) that their Board of Directors has approved the formation of a Patient Advisory Board (PAB). It will be a flagship program that offers patients the opportunity to serve as a sounding board and provide critical advice to their organization. The goal is to improve the patient experience, to ensure quality ostomy care, and to acknowledge that the voice of Ostomates can be a powerful tool in improving quality of care and patient satisfaction. I have been asked to become one of the “voices” and serve on this newly created Board…and I am thrilled! It has always been my goal to be a “liason” between Ostomates and those who can help our voices resonate.
Jeanine Gleba is the Advocacy Manager for the UOAA and I have been very fortunate to work with her on various projects. In fact, it was she who created the MIGHTY ADVOCATE AWARD I received in the summer of 2019. I have also accompanied her to Washington, DC to attend the Digestive Diseases National Committee meeting with Senators across the country. No doubt, with her at the helm of this Board, we will be able to make our mark on those in the health care field and make the difference we are aligned in wanting to achieve.
The PAB is an opportunity to talk about our experiences, share insights and information. In turn, we will take what we share back to “our People” and use it to effect changes where necessary and possible. It is very exciting to think that we will have a direct line to the UOAA Board of Directors as they involve themselves in legislation that may mean the difference between continuing to receive insurance coverage for supplies, have access to bathrooms when necessary, pass through TSA with a minimal amount of embarrassment.
The reason I am sharing this with you is that I am devoted and committed to raising awareness of ostomy surgery as the lifesaver it is, quality of care issues, reducing stigmas, and providing input about programs and platforms for services and support. I am involved in three Ostomy Support Groups, and eventually, once Covid is behind us, will continue to grow more groups. My passion has found the right home, and my commitment is unwavering. I am so fortunate because there is always more to do, more to know, more people to support.
If you have a desire to become involved in something that feels as if it can fill your heart, please pursue it. I never thought that a surgery could bring so many deep and meaningful layers to my life, so much more to want to accomplish, so much more I need to do. But each conversation with a new or future Ostomate, or a spouse who wants to know how to hold the hand of one she loves going through this adjustment, makes me grateful that I have my path in front of me. Hoping you will find yours in 2021. If we ever doubted that NOW is the time to do something, I am sure we have learned there is no better time than NOW!