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.

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

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.