- Meet Consumers/Patients
|Newsletters: Oley in Vancouver|
Oley in Vancouver:
A Regional Conference, Clinical Nutrition Week, and Awards for Don Young and Rex Speerhas, RPh
In late January, the Oley Foundation hosted a one-day conference in Vancouver, British Columbia. Over sixty people on home IV and tube feeding from throughout the region—primarily northwestern Canada and the US—gathered to hear nutrition support experts speak on their specialties, and to share with one another their experiences as nutrition support consumers and caregivers.
Oley regional conferences, like the more comprehensive annual conference, provide unique opportunities to learn about home parenteral and enteral nutrition (HPEN) as well as the invaluable experience of making personal connections. Oley organizes regional conferences in different areas of the country—often around another meeting, such as A.S.P.E.N.’s Clinical Nutrition Week, or near an HPEN center of experience—so that as many members as possible can attend.
At the regional conference in Vancouver, Oley President Rick Davis spoke in the morning about strategies he’s developed to make tube feeding more manageable, while Oley Ambassador volunteer Laurie McBride spoke about his many years on parenteral nutrition. Following this, healthcare professionals and attendees spoke in large- and small-group settings about communicating effectively with your healthcare provider (Jarol Boan, MD); quality of life issues (Marion Winkler, PhD, RD); Omegaven (Kathleen Gura, PharmD); maximizing the value of the food you eat (Laura Matarese, PhD, RD); tube feeding issues (Mark DeLegge, MD); minimizing HPN complications (Darlene Kelly, MD); micronutrients in HPN (Lyn Howard, MD); and ethanol locks (Rex Speerhas, RPh). In addition, Oley members Terry and Ann Edwards, Rick Davis, and others joined in a roundtable discussion on tube feeding.
Kathie Douglas, who has been on parenteral nutrition since November 2010, was one of the conference attendees. Her impressions of the conference can be found below.
We’d like to thank Laurie McBride for his untiring work and enthusiasm in helping organize this conference. We also thank Calea, for its generous underwriting of this conference; the speakers who gave their time; and our corporate sponsors and individual donors for their continued support.
Clinical Nutrition Week
As the Oley Regional Conference ended, Oley staff and several conference participants went across the street to the Vancouver convention center for the opening session of Clinical Nutrition Week, the annual meeting of the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.). Clinical Nutrition Week (CNW) is an important event for professionals involved with tube feeding and IV nutrition; it offers them an opportunity to learn more about PEN, to hear what is new in the field, and to network with peers.
It’s an important event for Oley, too. We learn about new research, products, and protocols, and network, network, network. It is our goal to cover as much as possible of the information that is pertinent to members in future issues of the newsletter.
This year, as for the past few years, Oley led a roundtable discussion at CNW. This roundtable allows HPEN professionals to interact with Oley members, helping them to better understand the HPEN consumer’s experience.
The other component of CNW that is so important to Oley is the exhibit hall. The Oley exhibit at CNW is usually very busy, with Oley volunteers and staff sharing information about Oley and HPEN, and answering questions.
Oley Members Recognized
At the A.S.P.E.N. awards ceremony, longtime Oley member and volunteer Don Young was given the Lyn Howard Patient Advocacy Award. Don was unable to attend, and Dr. Howard accepted the award on his behalf. This award was named in honor of Dr. Howard, cofounder of the Oley Foundation, in recognition of her significant contributions to patient-centered care throughout her prestigious career.
Don, who has been on PN for thirty-six years, has served as Oley Foundation president and has been generous in reaching out to others on HPEN. His goal has been to empower home nutrition support consumers by giving them the benefit of his experience and knowledge. “People seem to expect tubes and lines when they come to the hospital, but they don’t expect it in the living room,” Don has said. He seeks to demystify nutrition support, and to help people understand that “tubes and lines” don’t necessarily mean a person has to stop doing what they love to do.
Because Don was unable to attend CNW, he was honored later with a reception at Albany Medical Center, where the Oley Foundation offices are located and where Don has received much of his care over the last thirty-six years. “I can think of nothing I’d like better than to receive this award surrounded by friends,” Don said. Congratulations, Don!
Past recipients of this award include Bettemarie Bond and Lee Koonin.
Oley board member Rex Speerhas, RPh, BCNSP, CDE, was also recognized at CNW for his contributions to the HPEN field. Rex received the Stanley Serlick Award, which celebrates a pharmacist who has made significant contributions to improving safe practices for parenteral nutrition through published literature, membership on national committees or task forces and/or presentations at regional and national meetings. Way to go Rex!
Since I live in Edmonton, Alberta, and my parents live about an hour outside of Vancouver, the one-day Oley conference I read about in the newsletter seemed like an exciting chance to meet people who had the same, or similar, health issues as me and spend some time with my family. I didn’t know anyone on parenteral nutrition (PN)! I also knew it would be a great opportunity to meet some of the specialists who were scheduled to talk at the event.
The information presented at the conference was incredible. The patients who’ve spent years on home tube and IV feeding spoke clearly and enthusiastically about their experiences. They had all gone through some horrific times and conquered in the end. They gave me so much to be thankful for, such a deep understanding of why this new way of life wasn’t a curse...but a gift. I was in awe of our speakers.
Then there were the roundtable discussions, where I learned more than I could possibly have imagined. I was a little confused about one of the discussions at a roundtable, because people described a procedure that differed from the one I followed. They explained it to me, and when I got home I spoke with my nurses. The next delivery from my home care company came with a note saying that due to changes in protocol, PN patients were to follow the procedure I had learned about in that discussion. What a great thing to learn! I also found the discussions lively and stimulating.
There was happiness in the meeting room and I could see lots of joyful reunions between people who had met at previous conferences. The organizers of the event were warm and welcoming. I can’t say enough about how they made me feel. There was also a small “trade show” type display, where I found many items that were intriguing. I’m investigating a few in regards to my own PN.
I want to take this time to thank the Oley Foundation for presenting all of this, including breakfast and lunch at no cost to patients and their family members. It was an unbelievable day for me. I came away excited to go to the next conference. I will go a little better prepared with ideas and questions.
I’ve made a great friend, found some tremendous information resources, and have come home with a whole new attitude towards my life with PN. As my doctor said to me the first day of PN when I was a little touchy, “It has given you back your life, now you need to put it into perspective.” It wasn’t until the Oley conference that her words clicked and my attitude changed from pitying myself to being ever so thankful at being given this “second chance” at life.
LifelineLetter, March/April 2011