The National Hemophilia Foundation has a Consumer Bill of Rights and Responsibilities that tells you exactly what you should expect from your treatment center, as well as what is expected of you as a patient or parent at hemophilia treatment centers.
Provided below are what is included in the Consumer Bill of Rights and the Consumer Bill of Responsibilities.
Hemophilia Bill of Rights
You have the right to…
• Be treated at all times with respect and courtesy
• Freedom from discrimination
• Full access to information
• Know identities, title and affiliations of all healthcare providers
• Have information shared in a way that is easy to understand
• Be involved in and make decisions about the plan of care
• Choice and access to all needed services
• Decline follow-up
• Name an advocate
• Have advance directive
• Inspect the “Explanation of Bill” (EOB) or proposed charges
• Voice complaints and suggest changes
• Confidentiality and access to all treatment records
• Be free of all types of constraints
• Adequate pain management
Consumer Bill of Responsibility
You are responsible for…
• Treating healthcare providers with respect and courtesy
• Giving correct and complete information to the healthcare provider
• Seeking the facts and asking questions about the risks, benefits and financial aspects of recommended procedures
• Following the agreed upon plan
• The results if you choose to act against medical advice
• Keeping scheduled appointments
• Addressing the financial burden of your care
• Following the rules and regulations
• Respecting the rights, property and confidentiality of others
• Voicing complaints and asking for change
Always remember your rights and what you are responsible for when you receive treatment to avoid being taken advantage of or refrain from taking advantage of others.
Source:
National Hemophilia Foundation: http://www.stepsforliving.hemophilia.org/sites/all/themes/stepsforliving/pdf/Consumer_Rights_Responsibilities.pdf
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