HPN Awareness Week Recap

Oley and our members celebrated Home Parenteral Nutrition (HPN) Awareness Week from October 13 to 19, 2024. We are proud of the educational opportunities provided during this HPN Awareness Week. Below are the highlights. To watch the recordings, please visit: HPN and Oley

Kidz Klub

This year, we relaunched our virtual Kidz Klub for our youngest members. Youth Program Coordinator Jade Lusk hosted an online session with fun activities, including a custom coloring project. Some participants had the opportunity to reunite with friends they had made at the in-person annual conference in June, while others met for the first time. Please note that Kidz Klub events are not recorded.

Several parents reached out afterward to express how meaningful the experience was for their children. Some mentioned that it was the first time their child had “met” another child on nutrition support. Stay tuned as we announce our next virtual Kidz Klub event!

Vascular Access Deep Dive

In an Oley survey in 2023, complications related to medical devices were among the chief concerns for respondents. Dennis Woo, RN, “The Vascular Guy,” provided an insightful deep dive into vascular access devices, procedures, and potential complications associated with chronic conditions such as dysautonomia and connective tissue disorders. His expertise sparked valuable discussions among attendees.

Oley is proud to present a new resource for people with Central Venous Access Devices (CVADs). This resource, created with the help of patients who have experienced multiple CVAD placements, offers a list of questions you might have for your Interventional Radiology (IR) or surgical team. It’s designed to empower you in your shared decision-making process, helping you guide the conversation with your provider. Click here to view that resource.

Bathing Practices

Mary Gallotto, RN, MSN, CPN, addressed the common question of how to bathe with a central line. She empowered patients with CVADs by sharing simple tips and reviewing helpful products for safe showering and bathing.

Her valuable guidance gave attendees the confidence to maintain their personal care routines comfortably and safely.

Product Shortages

Shortages in home nutrition support have become a pressing issue. During the session titled “Behind the Scenes of Parenteral Nutrition Shortages: Community Efforts,” speakers from the American Society for Parenteral and Enteral Nutrition (ASPEN), the End Drug Shortages Alliance (EDSA), and Angels for Change shared valuable insights on the ongoing challenges of parenteral nutrition shortages. They discussed the underlying causes and explored potential solutions. This informative discussion highlighted the importance of collaboration among manufacturers, clinicians, and patients to advocate for positive changes and enhance the community’s response to these challenges.

In light of recent events, the Oley Board of Directors issued a statement emphasizing the need to address the immediate crisis of sterile water and dextrose shortages and the importance of implementing long-term proactive solutions. Click here to read their statement. For the most current information on shortages, visit the HPEN Drug Shortages page on the Oley Foundation’s website. If you have been affected by shortages, please contact info@oley.org and share your experience.

Transfer of Care for Consumers and Clinicians

While the session primarily focused on shortages, service disruptions were also a significant topic for parenteral nutrition consumers in October. Many major providers of home parenteral nutrition (HPN) have begun reducing the number of parenteral nutrition consumers they serve. To address this, Oley has developed a set of questions, reviewed by clinical experts, pharmacy providers, and experienced patients. These questions aim to assist clinicians and educate patients during transitions between different

IV therapy providers. Transitions of care can be challenging for everyone involved, and we hope these questions serve as a valuable tool during this process. You can find the resource here.

Oley has developed a clinical workflow considerations guide, with input and peer review from clinical experts, pharmacy providers, and patients with lived experience. This guide is designed to assist clinicians and inform patients in transitioning intravenous (IV) therapies between different companies.

We hope that this workflow document for transferring medical orders of parenteral nutrition (PN) will facilitate a safe transition for patients moving between care settings or pharmacies. You can find the guide here.

Consumer Conversations: Long-Term HPN Consumer Panel

In a prerecorded video, several long-term parenteral nutrition consumers shared their stories about facing the early challenges of living with HPN. In the video, they open up about their journeys and the early challenges they faced while living with HPN. With warmth and honesty, they talk about how they learned to advocate for themselves, build supportive communities, and find joy in their lives, no matter their complex medical needs. We invite you to check out this inspiring resource on our website, where you can watch it anytime you’d like!

How Patients Can Teach CVAD Experts What They Need to Know

In our final session of the week, Dr. Kevin M. Baskin, an Interventional Radiologist, led a patient-focused discussion about the systemic obstacles to improving vascular access care. Patients had the opportunity to share their experiences directly with clinicians, fostering open dialogue and collaboration aimed at enhancing care.

All recordings can be found here: HPN and Oley

Our goal for HPN Awareness Week was to share valuable information that addresses the diverse needs of our unique membership and to create opportunities for learning and connection within the HPN community. Oley is a place where members can engage with others who are facing similar challenges at different stages of their nutrition support journeys.

"We want to hear from you!"

How did you help spread awareness during HPN Awareness Week? Tag us on social media or share your stories with us at info@oley.org. Also, don’t forget to mark your calendars for Feeding Tube Awareness Week, taking place February 2-8, 2025.