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Ostomy and Continent Diversion Patient Bill of Rights

Posted By Jenna A. Bertini, Wednesday, May 16, 2018

Ostomy and Continent Diversion Patient Bill of Rights
Act Today and Be a Voice for Change

Joanna J. Burgess BSN, RN, CWOCN
Management Board of Director for the UOAA and Advocacy Chair

Today, as you read this, hundreds of ostomy patients across the country are struggling to find adequate help. There are not enough ostomy nurses and not enough outpatient ostomy services to meet the demand of this underserved population, which to date is estimated to be 725,000 to 1,000,000. This is my story, and this is how you can become involved and raise your voice to make a difference in the lives of this vulnerable population.

The new year had just turned in January of 1966, when my family was getting ready to bring me home from Boston Children’s Hospital. I was just three years old and had a new urostomy after a cystectomy for rhabdomyosarcoma of the bladder. My father remembers the blatant fear in the discharge nurse’s face as she handed my father a small brown paper bag of ostomy supplies and fumbled through them not knowing how to use them herself. It was a four-hour drive home from the hospital. My father described his feelings, mixed anxiety with fear and determination, as he stopped at a gas station on the way home to rummage through the supplies until he found a phone number--which happened to be for the company Torbot. The owner of the company explained that he himself had an ostomy and would show my father how to use the supplies. We made a detour to Rhode Island, met with Torbot and my father had his first and only lesson in caring for my ostomy. Over the years, I learned how to master what my father had mastered; putting a seven-piece pouching system together with thick elastic bands and ultimately gluing it to my body. My father, at age 86, is still haunted by how hard that pouching system was. When I gave my first lecture as a new WOC nurse to nurses caring for ostomy patients, my father had me vow that I would tell this story and help nurses to never be afraid to care for someone with an ostomy.

I was honored to be elected to the United Ostomy Associations of America (UOAA) Management Board of Directors in July of 2015, and truly felt like I was called to Chair their newly formed advocacy committee. I knew that I had struggled growing up, feeling alone and not knowing anyone to turn to for assistance; not only for the physical but emotional challenges I faced as well. Joining UOAA helped me to see more clearly that despite our modern era of ostomy care, including well-made products and ostomy nursing established as a profession--now celebrating 50 years, patients continue to struggle. In 2017, the UOAA office received over 1,300 calls from people needing assistance. Calls ranged from seeking support on how to find help for ostomy related problems to questions concerning insurance issues.

As a UOAA board member, Great Comebacks Award recipient and WOC nurse working both in acute care and outpatient ostomy care, I have had the opportunity to speak with hundreds of patients across the country living the ostomy experience. Most patients will experience stoma or peristomal skin problems ranging from minor to severe. All patients will experience the emotional impact of the ostomy; from simple trepidation as they adapt to their new life to fear, anxiety and depression. If you are an ostomy nurse, I believe it is your obligation to know what these patients face once they leave your care. These are the experiences that drove me into the six-year pursuit of starting an outpatient ostomy clinic affiliated with my acute care center. Not an easy task, but I had the support from my supervisor and administration and we opened the clinic to the community. In my small, one-day-a-week clinic, it is not uncommon for someone to arrive with a towel wrapped around their stoma due to the inability to keep a pouching system on; it is not uncommon for someone to arrive in tears; it is not uncommon for a loved one to wait in the waiting room because they “just can’t look.” But what isn’t uncommon enough is hearing the words, “death would have been better than this.” If this is happening in my small community – what is happening in yours?

It is crucial for you to understand that healthcare delivery for people living with an ostomy or continent diversion across the United States is not equal. There are geographic areas well served by nurses like you who have been trained in ostomy care, but there are also many areas where this is not the case. Additionally, ostomy care is not equal from facility to facility. People may receive care that meets quality standards in one facility, but once transferred to another facility receive little or no care. We are aware of the lack of ostomy nurses in home and outpatient ostomy care. It is a lot to digest and, when faced with a problem so significant, it’s natural to want to turn away and find a less daunting problem to attack. I was spinning in the magnitude of this problem, which I feel is a crisis in this country, when at a UOAA Board meeting; Advocacy Manager Jeanine Gleba suggested that the Advocacy Committee’s top priority should be updating the Ostomy and Continent Diversion Patient Bill of Rights. The Bill of Rights was first created by the former UOA in 1972. My first reaction was, ‘Why? We don’t have enough ostomy nurses to provide these services. Honestly, I was perplexed by the suggestion. We don’t even have enough ostomy nurses to provide fundamental care to the entire ostomate population. How could we possibly provide the full service set forth in the Bill of Rights? However, after pondering the idea for several weeks, my advocacy light finally lit up and I realized that restructuring these patient rights could actually be the force for the needed changes. The committee came together and reached a consensus to move forward with Jeanine’s suggestion to revise the Ostomy and Continent Diversion Patient Bill of Rights. Over the next three months or so, the revised Bill of Rights was developed and finally republished in the Summer of 2017.

Be_A_Force_For_Change_UOAAThe newly revised UOAA Ostomy and Continent Diversion Patient Bill of Rights (PBOR) provides details of the care people with an ostomy should expect to receive initially and over their lifetime.  It calls for healthcare professionals who provide care to people with ostomies to be educated in the specialty and to observe established standards of care. It is meant to be used as a tool for patients and the medical community. UOAA believes this could be a powerful tool to guide patients and families to be active partners in their care and to ensure the best outcomes. It is also a powerful tool meant to inspire ostomy nurses to be advocates and to inspire excellence in themselves, their teams, and their organizations. Our role as specialty nurses is multifaceted,holistic and must include advocacy. We must be a voice on behalf of our patients to ensure they are receiving optimal care and to encourage them to be self-advocates. Your voice matters in creating educational tools for patients, in creating outpatient ostomy clinics and in ensuring this underserved population is recognized and cared for. UOAA invites you to review the newly revised Ostomy and Continent Diversion Patient Bill of Rights (PBOR) and its accompanying tool, Practices for Ostomy Nurses to Utilize and Support Ostomy and Continent Diversion Patient Bill of Rights. 

I am pleased to say that the response to the new PBOR and accompanying tools, by healthcare organizations, professionals, industry and the ostomy population across the country, has been enthusiastic. The clamor for more access to care is louder and louder. The time is right to effect change. I believe that in this new era of blogs, newsletters, discussion boards, and social – social media,our profession has the best opportunity in its 50-year history to create change. My father would be pleased to know that the future looks hopeful. There are now many nurses who are not afraid to care for someone with an ostomy and there are advocates creating better lives for ostomy patients. 50 years ago, our profession started as enterostomal nurses... let's embrace our origins. Let’s work to increase access to care. Let’s find a way to get an ostomy clinic in every community. Switch your advocacy light on; together we can make it happen.

Tags:  Bill of Rights  blog  clinic  clinical  cystectomy  nurse  nursing  ostomy  outpatient  patient  pouching system  rhabdomyosarcoma  specialty  UOAA  urostomy 

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WOC Nurse Experience at the NSNA 35th Annual MidYear Career Planning Conference

Posted By Jenna A. Bertini, Wednesday, November 29, 2017
Updated: Wednesday, November 29, 2017

Written by Society member Daphne (Weiland) Hodges, BSN, RN, CWOCN.


NSNA 35th Annual MidYear Career Planning Conference

The National Student Nurses’ Association, Inc. (NSNA®) held their 35th Annual MidYear Career Planning Conference in San Diego from November 2-5, 2017. The conference hosted close to 550 nursing students and faculty, where nursing students received information about emerging healthcare trends and learned about legislative issues that impact the nursing profession.

I had the opportunity to represent the Wound, Ostomy and Continence Nurses Society (WOCN®) in two sessions. In the first session, ten nursing specialties were represented, including the WOC nursing specialty. 325 student nurses attended the specialty nurse panel session. A small breakout session followed with a greater focus on what WOC nursing is and the resources and support that the WOCN Society offers to members. The students were very enthusiastic about WOC nursing.

After each session, trails of nursing students followed me off-stage and into the hallway for sidebar conversations, questions and selfies, which allowed me to further (informally) plug the endless possibilities and career opportunities for our nurses of tomorrow.

I may be biased, but I believe I left the nursing students with feel-good emotions of smiles, applause and tears as I shared my experiences and the impact that WOC nursing has made on my life and on the lives of people WOC nurses have touched.

Tags:  career  conference  faculty  nsna  nurse  nursing student  panel  professionWOCN Society  session  specialty  student  woc nurse 

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WTA Program On-Site Competency Test Held at Home Care Conference

Posted By Jenna A. Bertini, Friday, August 4, 2017

RitKen and Associates, LLC. exhibited at the Home Care Association of Florida (HCAF) 28th Annual Conference and Trade Show in Orlando, Florida, where they took the opportunity to promote the WOCN® Society, the Continuing Education Center (CEC), the Wound Treatment Associate (WTA) Program and the Ostomy Care Associate (OCA) Program to more than 700 conference attendees.

ANew_WTA_Graduates part of the pre-conference, RitKen and Associates, LLC. held an on-site WTA Program clinical competency test for registered nurses who previously signed up for and completed the program’s online activities. As a result of the on-site clinical competency test, Cindy Valle, RN, of Diamond Home Health, successfully passed and officially became one of the newest graduates of the WTA Program!

During the conference, many attendees expressed their frustration related to the difficulty of finding enough WOC nurses to serve in a variety of health care settings, especially in home and hospice care. RitKen and Associates, LLC. stated, “It was gratifying to hear the expressions of respect for our specialty and professional society from home care and hospice owners, administrators and clinicians.”

HCAF_WTA_BoothRitKen and Associates, LLC. promoted the WTA Program as an extension of the WOC nurse’s reach, emphasizing the clinical role WTA graduates play in health care facilities. Graduates of the WTA Program have the ability to facilitate optimal care for patients with acute and chronic wounds under the direction of the WOC specialty nurse, WOC advanced practice registered nurse or physician. For more information on the WTA Program, please click here.

The WOCN Society would like to thank RitKen and Associates, LLC. for supporting the Society’s clinical and educational efforts to advance the WOC nursing practice and achieve evidence-based outcomes.

Tags:  Acute  booth  Chronic  Clinical  Competency  Education  exhibit  Florida  Graduate  Home care  Hospice  Module  Nurse  Online  registered  Specialty  Test  Training  WOC Nurse  Wound Care  WTA  WTA Program 

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WOCN Society Represented at the National Student Nurses' Association 34th Annual Mid-Year Planning Conference

Posted By Jenna A. Bertini, Monday, February 13, 2017
Updated: Friday, February 10, 2017

Nursing students considering their many options following graduation were introduced to wound, ostomy and continence nursing at the National Student Nurses' Association (NSNA) 34th Annual Mid-Year Planning Conference. More than 600 junior and senior nursing students from across the country attended the conference in Kansas City, Missouri, in November 2016.

WOCN Society member Carolyn Crumley, DNP, RN, ACNS-BC, CWOCN, presented a concurrent student workshop, “Wound, Ostomy & Continence Nursing – WOC Nurses: Who we are, what we do,” which provided an overview of the impact that the WOC specialty has on patient outcomes and the various opportunities for board-certified WOC nurses. Carolyn also participated in a nursing specialty showcase panel presentation, with many students expressing an interest and requesting additional information.

Interestingly enough, in an unusual coincidence, the panel participants who represented eight different nursing specialties included a classmate from each of Carolyn’s nursing education programs – BSN, MSN and DNP!

Read Carolyn’s thoughts on her informative presentation and how she hoped it impacted the students:

1. What is one piece of information you hope attendees took away and found helpful from your student workshop, "WOC Nurses: Who we are, what we do?"

I hope that the nursing students who attended the session gained a better understanding of the WOC specialty nursing practice – whether they were interested in pursuing WOC specialty practice as their career path or in working with WOC nurses within their organization in other capacities. For those attendees who were interested in pursuing the WOC specialty practice, I hope that they found the discussion of the educational and certification options helpful. Finally, I hope that my passion for working with wound, ostomy and continence patients inspired them to seek out an area of nursing in which they feel the same dedication and personal satisfaction.

2. What piece of advice did you provide the students during the Nursing Specialty showcase panel presentation?

I stressed to the students that if you are not experiencing personal fulfillment in a nursing position that you are working in, explore the multitude of other opportunities. And it is not all about how much money that you make!

3. What did you like most about presenting to nursing students at the NSNA conference?

It was inspiring to see a new generation of nurses involved with a professional organization, even prior to graduation! I heard several other presenters who reinforced the benefits of continuing their involvement with the various nursing and specialty organizations.

Tags:  advice  conference  continence  NSNA  nurse  nursing student  ostomy  panel  specialty  WOC Nurse  workshop  wound 

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Awesome Ollie the Ostomy Bear

Posted By Jenna A. Bertini, Thursday, January 5, 2017
Updated: Friday, January 6, 2017

The Society does not endorse or support products or services. This is a guest blog post written by ostomy patient and advocate, Dawnette Meredith.

If you have a story you would like to share, please email share@wocn.org.


Awesome Ollie the Ostomy Bear

Dawnette_Rabit_Therapy

This is me, a 50-year-old woman completely thrilled about a very expensive stuffed bunny from overseas. Ridiculous you say? Well, this is a very special bunny. It has an ostomy just like me! I underwent ostomy surgery in December of 2016 after battling severe colonic-inertia for 49 years, 9 months and 15 days. My bunny was a bright spot in my recovery. It was a daily reminder to smile and laugh at an otherwise less than ideal situation. For heaven’s sake, I’m a grown woman, but there I was showing off my stuffed bunny to family and friends! It somehow made it easier to talk about my illness and recent surgery.

Ollie_Ostomy_Bear

This little bunny sparked in me a hope to pass along positivity to other ostomates, and a dream to give children in the United States who undergo ostomy surgery a teddy bear with an ostomy. I designed a Teddy bear with a red button for a stoma and a removable Velcro ostomy pouch. Awesome Ollie the Ostomy Bear was born.

Rady_Nurses_BearsThere’s no better place to start than in your own back yard. Rady Children’s Hospital, near my home in San Diego, which performs roughly 120 ostomy surgeries per year, was the perfect place to begin. I know from personal experience that ostomy nurses are essential to helping patients recover and cope after ostomy surgery. My husband and I sponsored eight Awesome Ollie Ostomy Bears and delivered them to the ostomy nurses at Rady Children’s Hospital. The ostomy nurses were given the joyful task of handing out the bears to their ostomy patients. The response was overwhelmingly positive, and soon Rady Children’s Hospital called for more bears! Soon, other children’s hospitals wanted to acquire the bears for their ostomy patients. I quickly needed to find a way to get bears sponsored in time for the holidays!

Rady_Hospital_BearsI approached my ostomy support group and its members with the possibility of sponsoring the bears for Rady Children’s Hospital. Within 20 minutes, over 30 bears were sponsored! Wow! I hurried to prepare the bears before Christmas-time. I like to think of myself as “The Ostomy Elf” busily working in my teddy bear workshop. In a flurry of fabric and thread, the bears were ready. The second batch of sponsored bears was joyfully delivered to Rady Children’s Hospital in December 2016.

It’s a new year and Awesome Ollie the Ostomy bear has BIG plans! The goal is to secure funding and provide free Awesome Ollie Ostomy Bears to children’s hospitals all across the United States.

If you or your organization would like to sponsor Awesome Ollie Ostomy Bears at a hospital in your area or purchase a bear for yourself, please contact me at Terrabusy@yahoo.com or 858-336-4418. Awesome Ollie sponsorship costs $20/per bear. Find Awesome Ostomy on Facebook to keep up on all the Ostomy Bear news.

Tags:  advocate  bear  cope  experience  hospital  nurse  ostomate  ostomy  positivity  sponsor  surgery 

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