You Matter! Know What to Expect and Know Your Rights
The original “Ostomate Bill of Rights” was presented to the United Ostomy Association (UOA – the predecessor organization to UOAA) by the International Association of Enterostomal Therapists (now known as Wound Ostomy Continence Nurses) at the UOA House of Delegates Meeting during the Annual Conference in 1977 where they were adopted by UOA. The goal was to inform ostomates that all elements of quality care should be available to them.
UOAA’s goal is to drive change across the country to help improve the quality of your ostomy healthcare and ensure higher standards of care in all healthcare settings. This is why in 2017 UOAA revised these rights, now known as the “Ostomy and Continent Diversion Patient Bill of Rights” (PBOR) so that they are a tool for patients to advocate for their own care.
As a patient you have certain rights. Some are guaranteed by federal law, such as the right to informed consent. This means that if you need a treatment such as ostomy surgery, your healthcare provider must give you the information you need to make a decision.
Although UOAA’s PBOR is not mandated by law that does not make it less important; it just offers no legal recourse. It should be used as a guide for patients and families to know what is reasonable to ask for and what should be asked for to facilitate the best outcome for the patient.
Quality health care is a team effort. Patients need to collaborate with their health care providers and facilities.
If you believe you are not receiving the care you need, you must speak up as an empowered member of your healthcare team.
At the 2017 National Conference board meeting UOAA’s Management Board of Directors formally adopted the revised Ostomy and Continent Diversion Patient Bill of Rights.
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Top 10 ways patients should use UOAA’s bill of rights to achieve optimal care results
UOAA’s Ostomy and Continent Diversion Patient Bill of Rights is Supported By
Cleveland Clinic – R.B. Turnbull, Jr. MD Wound Ostomy Continence Nursing Education Program
Rutgers University School of Nursing – Camden Wound Ostomy Continence Nursing Education Program
The Wound and Ostomy Education Program at The Valley Foundation School of Nursing, San José University
Charter of Ostomates Rights
In addition, in 1993 the International Ostomy Association (IOA) issued their Charter of Ostomates’ Rights, revised most recently in 2007. This Charter presents the special needs of this particular group and the care they require. They have to receive the information and care which will enable them to live a self-determined and independent life and to participate in all decision making processes.
It is the declared objective of the International Ostomy Association that this CHARTER shall be realised in all Countries of the World.
The Ostomate shall:
- Receive preoperative counseling to ensure that they are fully aware of the benefits of the operation and the essential facts about living with a stoma.
- Have a well-constructed stoma placed at an appropriate site, and with full and proper consideration to the comfort of the patient.
- Receive experienced and professional medical support and stoma nursing care in the preoperative and postoperative period both in hospital and in their community.
- Receive support and information for the benefit of the family, personal caregivers and friends to increase their understanding of the conditions and adjustments which are necessary for achieving a satisfactory standard of life with a stoma.
- Receive full and impartial information about all relevant supplies and products available in their Country.
- Have unrestricted access to a variety of affordable ostomy products.
- Be given information about their National Ostomy Association and the services and support which can be provided.
- Be protected against all forms of discrimination.
- Receive assurance that personal information regarding their ostomy surgery will be treated with discretion and confidentiality to maintain privacy; and that no information about their medical condition will be disclosed by anyone possessing this information, to an entity that engages in the manufacture, sales or distribution of ostomy or related products; nor shall it be disclosed to any person that will benefit, directly or indirectly, because of their relation to the commercial ostomy market without the expressed consent of the ostomate.
Issued by the IOA Coordination Committee, June 1993, Revised June 1997.
Revised by IOA World Council 2004, 2007.
United Ostomy Associations of America
P.O. Box 525
Kennebunk, ME 04043-0525
Call us toll-free at: 1-800-826-0826
Email us at: email@example.com
Our Information Line hours are Monday-Friday, 9AM to 3PM (Wednesday until 2PM) EST. If you have an emergency, please dial 911 or contact your local medical professional.
UOAA does not provide Medical, Mental Health, Insurance or Legal Advice.
Join our national advocacy network and take action on issues that affect the quality of life of all people living with an ostomy or continent diversion in the United States. Help UOAA make an impact on decision-makers and together we can drive change.