Posts

Barbara Dale, RN, CWOCN, CHHN, COS-C
Director of WOC Services at Quality Home Health
Jeanine Gleba UOAA Advocacy Manager

I am a Wound, Ostomy, Continence (WOC) nurse in a rural home health agency. I have worked in the home health field since 2001. Many times when I visit patients in their homes, they complain about the lack of knowledgeable ostomy nurses in the facility (e.g., hospital) they came from or even from my own agency.  I try to explain to them that ostomy care is specialized and in general nurses don’t get much (if any) training in nursing school for this type of medical condition. I compare this with my own lack of IV education and skills since I rarely do labs or port flushes and have lost many of my previous skills. We can’t all know everything about all aspects of medical care and not every agency has access to an ostomy trained or ostomy certified medical provider. Nonetheless, it is the home health agency’s responsibility when they accept you as a patient to provide you the care you need and deserve. You have a right to quality care.

Are you aware of the patient bill of rights (PBOR) for persons with an ostomy or continent diversion? United Ostomy Associations of America (UOAA) developed the PBOR in 1977 and revised it in 2017. The PBOR is designed so that you can know what to expect and what is reasonable for you to ask for when you receive care. If you haven’t already looked over the PBOR, please take time to familiarize yourself. In addition, if you use ostomy or urological supplies, here is what you should understand and expect when receiving medical care in your home.

Be Prepared

Be prepared in advance to take appropriate steps to ensure you receive quality ostomy care.  As you prepare for discharge to home after your ostomy surgery, ask your case manager to make sure your home health agency has a certified ostomy nurse. This will also be important if you are a person already living with an ostomy with a new medical condition (such as hip surgery or a stroke).  Your home health nurse should re-evaluate your ostomy care. For example, someone with arthritis may have lost dexterity and now needs to switch to a different type of pouching application system or you may have gained or lost some weight over the hospitalization (which can change your abdominal contours and your stoma) and now your current system doesn’t give you 2-5 days wear time anymore.

Change Agencies if Needed

If you are already home and your home health agency does not have a certified ostomy nurse, then request that they consult with one to ensure that you receive the proper optimal care. I often get phone calls or emails from colleagues who work for other agencies asking me ostomy questions or asking if I can come to see their patient. We are all in this together and we all want what is best for the patient, which is YOU! Don’t be afraid to ask for an ostomy nurse!

You may even have to change agencies. It isn’t difficult even though your current agency will likely not want you to change.  You have a right to explain that you must receive your care from a certified ostomy nurse and your current agency, unfortunately, does not provide this type of care. All you have to do is call the agency YOU choose and tell them you want to transfer your care to their agency. Typically the new agency will contact your doctor or ask you to let your doctor know you want to change agencies. The new agency will then inform your current home health agency that they are taking over your care.  

What to do if an Ostomy Nurse is Still Not Available?

If all else fails and for whatever reason you have a home health agency without access to a certified ostomy nurse, you still have resources.  You can:

  • Go to www.wocn.org and look up a patient referral for an ostomy nurse in your area. This content also usually includes contact information for the WOC Nurse in your area.
  • Visit www.ostomy.org for educational resources such as the New Ostomy Patient Guide and UOAA has a dedicated webpage specifically for Ostomy Health Care Resources.
  • Use social media to find others that may be in the same situation as you. There are a multitude of Facebook pages/groups for ostomates with WOC nurses who follow these groups and offer comments or suggestions when specifically asked.

In Conclusion

We cannot say this enough: YOU have a right to quality care and deserve quality care. Know your rights. You deserve to be able to live your life to the fullest with your new or established ostomy.

Patients and medical professionals can work together to improve patient outcomes. If you want to help UOAA drive change and achieve ostomy quality of care improvements for patients while under home care, please print and share these resources with your home health agency: Achieve 5 Star Ostomy Home Health Care and Important Reminders for Home Health Providers Treating People with an Ostomy.

They are all superheroes in our book. They come in on their day off for us, they heal us, they teach us, they empower us, they advocate for us, they volunteer for us, they learn for us, they run our support groups, they make us laugh and help dry our tears.

They are also a central part of UOAA’s 7th National Conference and our advocacy program. Every year we ask our UOAA Affiliated Support Groups to nominate an exemplary nurse for UOAA’s WOC Nurse of the Year Award.

Charlotte Popovich, center, was awarded last year’s WOC Nurse of The Year.

April 14-20, 2019 marks WOC Nurse Appreciation Week hosted by the Wound, Ostomy and Continence Nurses Society™ (WOCN®). This year WOCN® Society is celebrating and empowering WOC nurses to discover the superhero that lives within them.

This celebration is a fitting time for us to begin our challenge of selecting a winner in a group that are all heroes. We know many still hide in the shadows and their good deeds remain unrecognized.

Prepare to be inspired by these testimonials from our Affiliated Support Groups who nominated this year’s amazing group of nurses.

Shirley Abraham
Ostomy Support Group at Baylor University Medical Center in Texas

Shirley has been passionately involved in the Baylor University Medical Center (BUMC) Ostomy Support Group since its inception. As a member of the founding committee, she was instrumental in inaugurating the new and much needed support group in October 2018. BUMC is a large hospital with a substantial number of colorectal and urological surgery patients, and the need for such a support group was very evident. She works closely with the surgeons to provide a smooth discharge and post-operative recovery transition. She also works in Baylor’s out-patient ostomy clinic, serving patients with peristomal problems or pouching issues.

“She is well respected as an expert in her field, dedicated to her field and passionate about the quality of care that she delivers. She is a true example of a highly dedicated RN and skilled WOC nurse”

Janice Beitz
Philadelphia Ostomy Association

For close to 20 years Janice has been asking the Philadelphia Ostomy Association to periodically come speak to her WOC nursing class. We have never appeared at her class where the students haven’t thanked us for our time and loved the opportunity to speak to people with ostomies. The trickledown effect of being invited by Janice to speak at her WOC nursing class is that her students graduate and the ones that stay local to this area call us to visit their patients.

“Her strongest attribute would have to be her commitment to her student’s, UOAA as a support system that provides Information to patients and a Patient Visiting Service where ostomates visit patients pre and post op to assist in the rehabilitation of new ostomates in getting on with their lives by showing them they can still work, dress in stylish clothes, and basically live a relatively normal life after surgery.”

Erin Donohoe
Ileostomy Association of New York, Inc.

Erin distributes monthly meeting flyers to clients and family members who may benefit from our meetings, and posts meeting notices in a prominent location on the hospital floor. She participates in Board of Directors meetings and is on Ileostomy Association of New York’s (IANY’s) medical advisory board. Erin is available for contact by e-mail or phone if urgent situation/question arises. She has been willing to provide her services to home-bound ostomates and has been flexible regarding her fees for home visits. She has often provided these services gratis for patients in need.

“Erin has exhibited a high degree of professionalism and commitment befitting a representative of the WOC nurse profession. She is a strong advocate for IANY and believes in the positive impact that mutual support groups can confer. Since our BOD and general meetings are held on Sunday afternoons, she willingly sacrifices precious personal time to be present. She consistently shows compassion, understanding to persons with ostomies and their significant others who approach her for help and assistance.

Diana Gallagher
North West Arkansas Ostomy Support Group

Diana started the group over ten years ago. It started out in a small room with about eight patients. It is because of her compassion, ability to educate and availability to both patients and doctors that our group has grown to a base of about 140 patients. We have patients that still come after ten years knowing they can always learn something new. Diana has extended our group hours for patients in need of education and information. Diana has a very prominent presence, and doctors and surgeons across the area rely on her expertise.

“Diana has a patients wellbeing in mind both physically and mentally. She is a constant in our ostomy community that is willing to help any ostomy patient. She is an advocate for patients!” 

Joy Hooper
Ostomy 2-1-1 inc. and South Georgia Ostomy Association

As the only support group in South Georgia, Joy will make home visits to help patients in rural areas as well as bigger cities. She will teach patients everything about caring for their ostomy. She opened an office where patients can get one-on-one care. She helps others find solutions to their problems. Joy will call and talk to any doctor or nurse interested in ostomy care. She travels around the country to teach ostomy care to other nurses.

“Joy Hooper is the most dedicted ostomy nurse. She invented an anatomical apron for helping patients understand their ostomy. She has so much knowledge about ostomy and will teach anyone who wants to know. Joy is a wonderful ostomy nurse and someone I can call on anytime day or night.”  

“Her LIFE is focused around not just our single ASG, but the entire Ostomy community. I would have to say that every attribute and commitment that Joy provides are CRUCIAL for not only our group, but to every other group in the ostomy WORLD.”

Charles Sloan
Boulder County Ostomy Support Group of Colorado

We have meetings in two different hospitals and Charles attends meetings in both facilities, even those that take place in the evening after he is off work. He makes time at the ostomy clinic for support group patients even when they have a full schedule. Charles developed a program for high school students and an in-house education program for the staff at his hospital to educate them in best practices at the bedside of ostomy patients. Charles is passionate about ostomies and designed WOC pins for those who complete his in-house ostomies 101 class. He also designed fun trading cards used for training programs.

“Our group takes a great deal of comfort knowing that Charles is always there for us. If there is an emergency we all know how to contact him and he will provide support.”

Angela Natale-Ryan, Stephanie D’Andrea, Ronnie Funke, Pam Hughes
Union County Ostomy Support Group of New Jersey

This group of four dedicated nurses interface with new members of the support group, and educates medical professionals on the importance of our visiting program. They have established our first Ostomy Center and attend meetings. From the moment I was marked my WOC nurse has been beside me and encouraged me to attend my first support group. In four years we have grown to a UOAA chapter with many members.

Our four WOC nurses are such a cohesive and dependable group of women who concur, coordinate and ensure that all ostomates are treated completely, they are determined to offer the best to all of us. They are problem solvers who never give up until all patients are comfortable. Ostomates are in the best hands possible with the four of them, who act as one!

United Ostomy Associations of America’s (UOAA) 2019 WOC Nurse of the Year Award will be presented during its 7th National Conference in Philadelphia this August.

By Ed Pfueller, UOAA

There is no doubt the world would be a better place with more wound, ostomy and continence (WOC) nurses. For many, WOC nurses are the first sign of hope after a life-changing surgery. The right nurse can provide confidence when there is doubt, and comfort when there is pain or fear.

2017 Recipient of the UOAA WOC Nurse of the Year Award Frances Wilson with President Susan Burns.

April 15-21, 2018 marks WOC Nurse Appreciation Week and this year is also the 50th Anniversary of the Wound, Ostomy and Continence Nurses Society™ (WOCN®). For those of us at UOAA these nurses are so much more than medical professionals. They are our affiliated support group leaders, advocacy champions, cheerleaders, advisors, friends, national leaders, speakers, stoma clinic volunteers, event organizers, fundraisers and so much more.

It is one of our great joys (but also one of our biggest challenges) to select just one recipient of our WOC Nurse of the Year Award. Unsung and unrecognized nurses can be found in every corner of our national network of support.

Prepare to be inspired by these testimonials from our Affiliated Support Groups who nominated this year’s amazing group of nurses. Feel free to share with us in the comments a special nurse who has helped you on your journey and learn a bit about the people behind the credentials.

Anne Marie Knudsen
South Bay Ostomy Support Group in California

Anne has served as the group’s program coordinator 330 months (or 30 years and 11 months the nominators say.) She encourages doctors to utilize ostomy visitors to make a difference from day one. She provides free home visits to members and encourages all to attend meetings.

“She is always available, a mentor, has a compassionate heart, loves all ostomates and is an inspiration. She gives free time to the group and uses her own money to present gifts of appreciation to speakers. She will visit all who are desperate for care at no charge. I have the greatest respect for Ms. Knudsen she is an angel for sure!!”

Gina Day
Ostomy Support Group of the Poconos in Pennsylvania

Gina founded the group last year bringing much-needed ostomy support to the region. Gina provides educational programs for the group and heavily promotes the group in her area by hosting a Run for Resilience Walk Ostomy 5k walk, appearing in local media stories and last year even got the mayor to declare Ostomy Awareness Day.

“Her dedication, persistence and passion brought an awareness to our community that it so greatly deserves. Her positive personality and motivational disposition is an inspiration for our members. Gina Day connects with group members in an indescribably sincere manner. The support group slogan is “You will never be alone” and Gina sees to it that people are not. Gina fills the void and disconnect that some patients feel after they leave the hospital through her support and forums to share stories. Her outstanding expertise has benefited those living with an ostomy in our area greatly.”

Charlotte Popovich
Ostomy Association of Metro Denver

Charlotte is a tireless volunteer with a deep connection to the doctors and ostomates in her community judging by the pages of praise that accompany her nomination. They say she has an instinct for knowing when patients need that extra push of confidence to take matters into their own hands.

“Her strongest attribute is her total commitment to the ostomy community’s needs. It is amazing her attention to our new members’ medical and emotional needs as well as being available to them 24/7 at a moment’s notice. Her rate of referrals from surgeons is unmatched. After working all day, she voluntarily attends all evening support group meetings and does question and answer sessions to address patient concerns.”

And in a Letter from Dr. Sandosh Nandi

“The dedication to her craft is unparalleled. She is diligent, caring, knowledgeable and thorough. She has helped so many patients and the praises they sing go on and on. She not only teaches patients about their ostomy but helps them with social and mental hurdles as well. She takes calls on vacation and stops by someone’s house for an emergency change in the middle of the night. She is nothing short of amazing. Big heart and a very caring tough love approach.”

Lara Leininger
Triangle Area Ostomy Association in North Carolina

Lara is known as her group’s cheerleader in her role as a WOCN support nurse.  She supports guest speakers and is available to participants for one on one questions after formal meetings. She also makes her contact information available should questions arise from participants between monthly meetings. She supports the health and wellness of her group through her commitment to living a healthy lifestyle through exercise and helps others to believe that an ostomy does and should not limit a person’s life in any way.

“Lara, in her many years of working as a WOCN for the University of North Carolina Hospital, has shown love, compassion, care and kindness to her many ostomy patients and has shown ongoing support for her WOCN colleagues in her community. Lara has been so devoted to the ostomy community that in 2014 she co-founded the Wanna War One Ostomy Awareness 5K in Durham, NC. This empowering event now known as the Run For Resilience Ostomy 5K, supports the educational and advocacy programs of the UOAA. The event will be celebrating its fifth anniversary on October 2018 and will represent nine locations across the country. Lara has also been a dynamic volunteer and speaker at two UOAA national conferences and has shared the story of caring for her mother, an ostomate, through the Phoenix Magazine, Spring issue 2017. As stated in this article from her colleagues “Lara is a person and nurse of great care. She fills with emotion when talking about her love for her patients. When her mom became ill and it was evident that she was facing ostomy surgery, Lara dove deep into the journey with her mom. This is what Lara does and who she is”.

Angela Ladner
Gulfport Mississippi Ostomy Support Group

As part of the first UOAA support group in Mississippi Angela secured the location at Memorial Hospital for groups and arranges for local home health, pharmacies and manufacturer participation with the group.

“She encourages patients to participate in the group’s activities mentally and emotionally with body image issues. She is a liaison with physicians to encourage participation and outreach. She is caring and supportive of her population. Willing to assist in the needs of the patient and the family. She helps the indigent population with resources for supplies. She also coordinated an effort to assist flood victims in Houston with ostomy supplies. She is respected by patients, colleagues, and families.”

Kathryn Baxter
United Ostomy Support Group of Orange County NY

Kathy has been a been a devoted liaison, exceptional WOC/ET Nurse for the group for over 25 years. The group counts on her expertise and knowledgeable background as a PA in the busy NYC Hospital Mt.
Sinai.

“Kathy” as we all know her has always from the very first time she came to a meeting
has been interested in the complete rehabilitation of every ostomate. She finds ways often to
resolve the most difficult ostomy problems for those who think they will never have a resolution.
Kathryn finds the time to help in programming and acquisition of products for the Chapter.
If it weren’t for her support over the years this Chapter would cease to exist. We are
grateful for all the time and talent she has brought to us clinical evaluations, information support on newest equipment and surgeries, caring and advising meeting participants on what is available medically as well as psychologically.

United Ostomy Associations of America (UOAA) is presenting the 2018 WOC Nurse of the Year Award at the 2018 WOCN Annual Conference in Philadelphia.