CEO, Healthcare Collaborator & Patient Engagement Leader/Advocacy Consultant | Rare Diseases & Public Health Researcher
Thank you Greater Ohio Vascular Access Network GOVAN for shifting the paradigm! It was nice to present on the adult patient perspective of living with long-term vascular access devices alongside, Tara, who is a PICU nurse and a parent to her son with TPN, and Mickey Hawes, nurse, researcher, consultant, previous Home Infusion Company exec., and PICC patient. The presentation was titled, “The Story Behind the Line: The Journey You Don’t See.” Todd Heslep BSN, RN, Paramedic, VA-BC, President, and the Executive Team at GOVAN made sure a patient and family perspective was shared in a meaningful way at their network meeting by: 1. Having us as the first speakers for the day. Doing so respects our time as the rest of the content is catered to clinicians and allows us to speak to audience members after having shared the bulk of our story so we do not have to repeat or experience any repeated trauma in resharing. Starting with the patient and family perspective can help set the desired tone and provides a good reminder of our why. 2. Valuing our time and energy as individuals and as a group. 3. Giving us autonomy in our slides and our call to action to the audience. I also thought putting questions from the audience in the middle of the presentation changed up the style and pace nicely and allowed the audience to feel included and have their questions answered. Great questions were asked pushing us to a good panel discussion. It was a joy to present and be a voice alongside Tara and Mickey’s thoughtful and direct insights. We shared the education we received to care for our lines in the home that has been most useful and the hardest to implement, and tips on how to communicate with us as adults, children, and caregivers, in the hospital at different points of access and the resources we may or may not have in the home. We truly asked everyone to understand this is our life not our job and we want you to take ownership of care delivery WITH us. We must work as partners. Being in a more intimate audience I got to see more closely for the first time clinician reactions of shaking heads, jaw drops and big eyes, when they learn I have had 31 central lines, 26 CLABSIs, 15 yrs no infection, same line for >5 yrs, and too many sticks w/o ultrasound. This is my why. This is why I continue to educate and travel to present. I get similar reactions in the hospital as an adult, especially at non-subspecialty hospitals stating I am the problem instead of asking why I had infections and line placements, what has been and is currently working well, and how can we continue that for you in this hospitalization and moving forward beyond these 4 walls. No one else should go through what I have gone through. We all have to learn from mine and the larger patient and family community experience for the next generation, for my gutsy peers, and for my friends who I have not met yet. #vascularaccess #vascularhealth #centralvenouscatheter #rarediseases #isavemyline
👏 👏
Emily Ana Levy
8mo
Keep spreading your message!
Professor of Surgery/Pediatrics/Global Health, Icahn School of Medicine at Mount Sinai, Director, Intestine Rehab & Transplant, Transplant Surgery Fellowship Program Director, Mount Sinai Medical Center, New York.
9moBravo Swapna - I hesitated but one moment and stuck with my first choice of the ‘celebrate’ emoji. Your passion and commitment to share your journey and much of what you’ve learnt along the way, with peers, with clinicians and anybody else - is truly remarkable, always inspiring and worth celebrating. I’m privileged to benefit from your lived and learned wisdom.