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Tag Archive for: PBOR

Using the Power of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights

Advocacy, Caregivers, Healthcare, Ostomy News, Ostomy Nurse, Support Resources

A WOC Nurse Team’s Journey to Expand and Improve Ostomy Care

By Joanna Burgess-Stocks, BSN, RN, CWOCN, UOAA Advocacy Committee Co-Chair

When organizational changes threatened access to specialized outpatient ostomy care, a team of certified Wound Ostomy and Continence (WOC) nurses at Indiana University Health turned to an important advocacy tool: UOAA’s Ostomy and Continent Diversion Patient Bill of Rights (PBOR). What followed was a successful effort to preserve and expand ostomy services for patients across the continuum of care.

Meet the WOC nurses who used the PBOR exactly as intended; to educate and outline optimal standards of ostomy care to facility leadership and to use it as a catalyst for change and improved patient care. Read their amazing journey of courage, fierce discipline and what drove their passion to create change.

 Discovering the Power of the PBOR

For May Ishikawa, MSN, FNP-C, CWON and Bethany Feeney, MSN, APRN, AGPCNP-BC, CWOCN-AP WOC nurse champions at Indiana University Health, the PBOR became much more than a document, it became a catalyst for advocacy, program growth, and improved access to specialized ostomy care. May states “It completely changed how I practiced when I transitioned from inpatient to outpatient care.”

May Ishikawa was introduced to UOAA resources by a fellow CWOCN who regularly shared patient education materials, including the New Ostomy Patient Guide and Eating with an Ostomy. As she explored additional resources, she discovered the PBOR and quickly recognized its value as a guide for lifelong ostomy care. These clinicians shared copies with patients, and it became central to their patient education and empowerment efforts.

It also provided a needed framework for encouraging annual ostomy checkups and empowering patients to seek support as needed. May states “maintaining a connection with a certified ostomy nurse through the entire ostomy journey is a basic right.”

This simple yet powerful document would help shape a much larger journey, one that transformed advocacy into action.

Building on a Strong Foundation

IU Health already had many elements of the standards of the PBOR in place. Building a strong collaboration between inpatient and outpatient WOC teams ensured that patients left the hospital with scheduled follow-up appointments, creating a seamless transition from surgery to recovery. Their comprehensive approach to outpatient care included the following assessments:

  • Pouching system effectiveness
  • Peristomal skin health
  • Patient confidence and self-care skills
  • Supply management needs
  • Overall adaptation to life with an ostomy

A Pivotal Moment

The ostomy clinic, originally located within an outpatient wound clinic under the hospital’s rehabilitation division, experienced steady growth. However, during an organizational review, leadership proposed shifting the outpatient space to focus exclusively on wound care, raising concerns about the future of dedicated ostomy services.

Rather than viewing this as a setback, May and Bethany saw an opportunity to advocate for their patients. May states “We utilized this pivotal moment to reinforce the core principles of the PBOR, reminding our community and our organization of the value of direct, unimpeded access to certified ostomy nurses.”  Their efforts helped demonstrate that ostomy care is an essential part of quality patient care before surgery, after surgery, and throughout a patient’s lifetime.

Building the Case for Change

To support their case, the team developed a meticulous business plan that combined financial and operational data, a detailed appendix of specialized billing codes, and clinic outcomes to demonstrate the value of specialized ostomy care. Their Advanced Practice Provider (APP) Manager became a key advocate and partner in the effort, helping present the proposal to senior leadership.

“It was important to track our department’s own internal data, May explained, “By presenting objective metrics that clearly measured the clinical impact certified ostomy nurses made on every patient we saw, we were able to build an undeniable case.”

Patient feedback and testimonials were equally compelling, illustrating how specialized ostomy care helped individuals adapt, regain confidence, and improve their quality of life. Together, the data and patient feedback convinced leadership of the program’s value. Ultimately, the clinic relocated under the surgical service line, preserving patient access to certified ostomy nurses and strengthening its connection to surgical care.

Why This Effort Worked

The success of the initiative came from changing perspectives. Rather than presenting specialized ostomy care as an additional service, the team reframed it as a fundamental patient right. By combining clinical data, patient stories, interdisciplinary collaboration, and the principles of the PBOR, they demonstrated that access to certified ostomy nurses is not a luxury, it is an essential component of quality healthcare.

Closing the Preoperative Education Gap

For May and Bethany, one important opportunity remained: expanding access to comprehensive preoperative education.

Patient feedback and tracking regarding the provision of pre-operative services at the clinic had consistently demonstrated the value of preoperative counseling. Patients who received education before surgery reported feeling more prepared and experienced smoother transitions after surgery. Those who had not received preoperative support often expressed a desire that such services had been available to them.

“When patients understand their rights and expectations, they become stronger advocates for themselves and help drive improvements throughout the healthcare system.”

Today, under its new surgical-home structure, the clinic was ideally positioned to expand services and bring the PBOR’s vision to life. Guided by its principles, the team strengthened preoperative counseling and highlighted the critical role education plays in helping patients enter surgery informed, empowered, and confident. Their program includes:

  • Procedure-specific education
  • Stoma siting with active patient participation
  • Expectations for recovery
  • Output management
  • Hands-on pouching instruction
  • Skin care and wafer preparation
  • Nutrition and hydration guidance
  • Discussions about intimacy and lifestyle concerns
  • UOAA educational resources and manufacturer starter kits

Lessons for Other Organizations

For facilities interested in implementing the PBOR, May and Bethany recommend:

  1. Read the PBOR and the accompanying White Paper thoroughly.
  2. Conduct a gap analysis comparing current practices to PBOR standards.
  3. Identify opportunities to improve patient access throughout the continuum of care.
  4. Track meaningful clinical metrics, including readmissions and patient satisfaction.
  5. Pair patient outcomes with operational and financial data to build a compelling case for leadership.
  6. Educate stakeholders about the value that the PBOR brings to patients and the healthcare organization.

A Call to Action; Expanding Reach of the PBOR!

For May and Bethany and their colleagues, the PBOR is a powerful advocacy tool, but its impact could be even greater through broader awareness among healthcare organizations, professional societies, educators, and patient advocacy groups.

Bethany emphasizes the importance of introducing patients and caregivers to the PBOR early in their care journey. “When patients understand their rights and expectations, they become stronger advocates for themselves and help drive improvements throughout the healthcare system.”

The experience at Indiana University Health demonstrates what can happen when evidence-based practice, advocacy, and patient-centered care come together. Guided by the PBOR, May and Bethany and their team transformed a challenge into an opportunity to strengthen services and expand access for ostomy patients.

As May notes, “Ostomy care is basic essential healthcare that patients deserve, not just before and immediately after surgery, but throughout their entire lifetime journey.”

August 11, 2026
https://www.ostomy.org/wp-content/uploads/2026/08/PBOR-Advocacy-Blog.jpg 1459 2000 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2026-08-11 16:04:462026-08-12 08:45:59Using the Power of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights

Shining a Light on WOC Nurses

Caregivers, Healthcare, Ostomy Nurse

In celebration of Wound, Ostomy, and Continence (WOC) Nurse Week 2021, help us to shine a bright light on these special nurses. They give us the hope, support, and specialized care needed to thrive in life with an ostomy.

WOC nurse volunteers spend countless hours advocating, leading support groups, educating, fundraising, and supporting UOAA programs and services. UOAA recognizes that not all ostomy patients have access to a WOC nurse and we’ll continue to advocate for access to a specialized ostomy nurse from preoperatively when your stoma site is marked through an ongoing lifetime continuum of care as outlined in our Ostomy and Continent Diversion Patient Bill of Rights.

We asked UOAA’s social media community to share how a WOC nurse has made a difference in your life, health, or support group. We hope more nurses will consider this rewarding specialty. Thank you WOC nurses, you are our guiding lights.

I would like to thank my WOC nurses who have and continue to support me as an ostomate. My nurses inspired me so much I went to nursing school and graduate this month with a BSN and plan on continuing on. To become a WOC nurse myself! Thank you WOC nurses! -Katie Lee

“My WOC was a lady named Gayle. She helped my Mom so much with me. I remember many visits to the ER ward and having her there. She was funny, nice and on it. I used to love seeing her. She stayed by my side from 3-6yr old into my adulthood. She fought hard to find a bag that was the perfect fit for me. She got a new product in and it changed my life significantly, she fought tooth and nail to keep me in that bag, even when Canada decided to stop offering it openly. I still wear that brand to this day. I always heard rumors she was also an Ostomate and I can’t say how long. That made me love her more. I will never forget those who had a hand in my welfare and saw me through their entire career. I miss her and the others immensely. Jody is my new WOC and although I rarely need her, she’s there to help, even if it’s a panic situation that couldn’t wait for an appointment.” –Camille C.

“Joanna Burgess Happy WOC Nurse week. You have been a true Angel of Mercy for me over the years!” –Col Justin Blum

“My son’s WOC nurses at CHLA were awesome!!” – Teri C.

I am a WOCN and worked with MANY ostomy patients in the past. The thanks go both ways — I have never (in a long nursing career) felt as appreciated for my clinical skills and assistance as I do when working with people with an ostomy. They are the reason I have stayed in nursing. -Cris R.

This is Karen with my husband at his 55th birthday party in 2019 -Pam Allen Williamson

We have 3 great WOC nurses in our community that come to our ostomy support meetings Karen Eubank, Michael Byars and Jason Pratt. Michael went above and beyond by creating a weekly outpatient ostomy clinic after I told him I learned some cities had those while attending a UOAA conference. Karen who has been coming to our meetings for over a decade, hosts many of our support group parties at her house, works at the ostomy clinic on a regular basis, pays to store donated supplies and often helps people after hours. Both of them visit my husband when he is hospitalized, came to the house to visit him when he was home on hospice and came to his funeral. We are extra grateful to Karen because before he left the hospital on hospice she applied a special high output bag connected to bed drainage bag to minimize the family’s need to interact with the ostomy. Karen who is a neighbor told me that she would come change the bag twice a week. The hospice nurse was fascinated and stayed late to watch Karen change it out. He was going to stay in the hospital as long as they would let him to avoid family having to deal with his bag because he had always been so independent with it until nearly the end. Karen’s solution allowed him to come home and be surrounded by family caregivers that loved him and have wonderful conversations remembering fun times and having important conversations instead of the visitor limitations hospitals right now. We are so grateful to her for this and hope it will benefit other families of bed-bound patients. BTW we still fondly remember my husband’s first WOCN Nurse Licklighter who was a nurse at Keesler AFB in 1993. She marked him before surgery and taught him how to handle his bag and he kept her handwritten instructions forever and sometimes copied them for others. -Pam A.W.

I can’t thank the nurses at Ohio Health Riverside Hospital they helped me so much and made an otherwise difficult transition quite non traumatic! –Carol B.

Thank you to Erin and Vanessa at New York Presbyterian! –Jameson Cycz

The ConvaTec nurse Lorelei. She has been a stoma saver. She helped me troubleshoot my leaking problem, got me into a new pouching system, that is awesome and when I ran out of samples and am in limbo with my supply company in getting the new pouches and other supplies, she set me up with a holdover supply, so that my stoma won’t be continuously injured by my current pouches.- Susan Gentner

I’m thankful for all of the WOCNs I have been to. Some I’ve known for many years. They are very knowledgeable and helpful with various products.I also want to give a shoutout to our great WOCNs at 11 Health & Technologies for being amazing for our team and patients. ? –Megan Alloway

Amazing Aimee Frisch. The best WOCN in know. Love you. -John Pederson

Happy ‪#WOCNurseWeek2021! What you do for ‪ostomy patients and the impact you make is immeasurable!  Plus we are grateful for all that you do to support UOAA and our ‪advocacy program! You are advocates for patients and can influence change. Shine on! @UOAA_Advocate -Jeanine Gleba

April 15, 2021
https://www.ostomy.org/wp-content/uploads/2021/04/NurseWeek-CertificateFeatured.jpg 463 800 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2021-04-15 15:07:062021-04-15 15:21:11Shining a Light on WOC Nurses

Achieve Quality Ostomy Care While in Your Home

Advocacy, Healthcare

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.

May 9, 2019
https://www.ostomy.org/wp-content/uploads/2019/05/Homehealth_web2.jpg 1031 1900 Contributor https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Contributor2019-05-09 12:43:122019-05-10 16:23:08Achieve Quality Ostomy Care While in Your Home

Quality of Care Resource at the Centers for Medicare and Medicaid Services (CMS)

Advocacy

By Jeanine Gleba, UOAA Advocacy Manager

The overall goal of the UOAA Patient Bill of Rights (PBOR) initiative is to ensure high quality of care for people who had or will have ostomy or continent diversion surgery. To accomplish this it’s important that patients and families actively participate in patient health care.

According to CMS an integral part of the U.S. Department of Health and Human Services’ (HHS) National Quality Strategy is the CMS Quality Improvement Organization (QIO) Program. It is one of the largest federal programs dedicated to improving health quality at the community level.

Under the QIO program there are two Beneficiary and Family Centered Care-QIOs (BFCC-QIOs) who help Medicare beneficiaries and their families exercise their right to high-quality healthcare. The two BFCC-QIOs are KEPRO and Livanta and they serve all fifty states. BFCC-QIO services are free-of-charge to Medicare beneficiaries.

Depending on where you live (Locate your BFCC-QIO) they are available to help Medicare beneficiaries and their families or caregivers with questions or concerns such as:

• Am I ready to be discharged from the hospital?
• Should I be receiving needed skilled services such as physical therapy, occupational therapy, from a home health agency, skilled nursing facility, or comprehensive outpatient rehabilitation facility? (Care from a certified ostomy nurse is a skilled service.)
• I’m concerned about the quality of care I received from my hospital, doctor, nurse or others.
Examples of quality of care concerns that pertain to our PBOR include but are not limited to:
• Experiencing a change in condition that was not treated (such as skin infection around stoma)
• Receiving inadequate discharge instructions (such as inadequate individual instruction in ostomy care, including the demonstration of emptying and changing pouch or no instruction on how to order ostomy supplies when you leave the hospital)

*Why should Medicare Beneficiaries contact their BFCC-QIO with concerns?

First, BFCC-QIOs can help when you have a concern about the quality of the medical care you are receiving from a healthcare facility (e.g. hospital, nursing home, or home health agency) or professional. You can also file a formal Medicare complaint through your BFCC-QIO.

Furthermore, according to CMS, when Medicare beneficiaries share their concerns with their BFCC-QIO, they help identify how the health care system can better meet the needs of other patients. Beneficiary experiences, both good and bad, give the QIO Program the perspective to identify opportunities for improvement, develop solutions that address the real needs of patients, and inspire action by health professionals. This is what we are working towards achieving with our PBOR initiative. This is a resource to help the UOAA community make this happen.

Last, Medicare beneficiaries have the right to file an appeal through their BFCC-QIO, if they disagree with a health care provider’s decision to discharge them from the hospital or discontinue services, or when they have a concern about the quality of the medical care they received from a health care professional or facility.

*When and who should Medicare Beneficiaries contact?

A Medicare beneficiary can call 1-800-MEDICARE or your Local State Health Insurance Assistance Program (SHIP) if he or she:

• Has general questions about Medicare coverage;
• Needs clarification on how to enroll in Medicare;
• Wishes to discuss billing issues.

A beneficiary can contact their BFCC-QIO if he or she:

• Needs to discuss the quality of care received;
• Wants to file a formal quality of care complaint; or
• Needs help to understand his or her Medicare rights.

While BFCC-QIOs are the primary point of contact for Medicare beneficiaries and their families, when necessary, quality of care complaints can also still be made by calling 1-800-MEDICARE.

For those interested in learning more about what to do if you have a concern about the care you received while on Medicare, please refer to this FAQs page produced by CMS.

Be involved in your healthcare and if you are a Medicare beneficiary, take advantage of this resource to self-advocate and ensure a better outcome for yourself.

*Source qioprogram.org

March 20, 2018
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The Snowball Effect of Ostomy Advocacy

Advocacy, Ostomy News

Taking a stand for better ostomy healthcare

By Jeanine Gleba, UOAA Advocacy Manager

United Ostomy Associations of America (UOAA) is an organization that empowers people to get the care they deserve to live life to the fullest. The poor quality of ostomy care received by some in our community limits those lifestyle choices. For people living in the United States with an ostomy or continent diversion healthcare delivery is unequal. A person with an ostomy should be treated as seriously as someone living with diabetes. At hospital discharge, it would not be safe or acceptable for an insulin-dependent diabetic to be incapable of giving themselves an injection, self-managing their diet and blood sugars, and obtaining their supplies. It is not safe or acceptable for anyone living with an ostomy to be discharged without knowing how to prevent dehydration and not have access to care and supplies to live a healthy active life. We can’t let the words “quality healthcare” become meaningless buzzwords for those facing this life-saving/ life-changing surgery. The time has come to take a stand.

To get the ball rolling UOAA recently revised the Ostomy and Continent Diversion Patient Bill of Rights (PBOR), which has become the foundation to stand on, to SPEAK UP. The PBOR states the details of the care people with an ostomy should expect to receive initially and during their lifetime. It calls for healthcare professionals who provide care to people with ostomies, to be educated in the specialty, and to observe the standards of care. It is a guide for patients and families to be active partners in their care, to know what is reasonable to expect so they can collaborate in their care and get the outcomes they deserve.

UOAA has taken the lead to generate this change by promoting the new PBOR and its use. We are excited by the response and support we are receiving and know we can continue to make big strides.

So the little PBOR “snowball” rolling down the hill is gaining momentum and is poised to impact the barriers for people who live with ostomies and continent diversions in America. Be a part of the change, download the PBOR and the Top Ten Ways to use it. Step up and spread the word.

 

March 13, 2018
https://www.ostomy.org/wp-content/uploads/2018/03/snowball.jpg 334 500 Jeanine https://www.ostomy.org/wp-content/uploads/2017/02/UOAAlogofinal2.png Jeanine2018-03-13 16:37:362018-04-15 13:33:27The Snowball Effect of Ostomy Advocacy

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Our Information Line hours are Monday-Friday, 9am to 3pm EST. If you have an emergency, please dial 911 or contact your local medical professional.

Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice. Visit UOAA Virtual Ostomy Clinic provided by The Wound Company for non-emergency, virtual ostomy support.

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UOAA is the leading organization proactively advocating on behalf of the ostomy community. Recognizing that we are always stronger together, we encourage everyone to get involved by joining our Advocacy Network. We’ve also created several Advocacy Tools and Resources to help you successfully advocate on behalf of the ostomy community to ensure every ostomate receives quality care.

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UOAA does not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations.

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