Andrea Wilson Woods founded “Blue Faery: The Adrienne Wilson Liver Cancer Association” to provide education and support for liver cancer patients and their caregivers. After experiencing the challenges of caring for her sister Adrienne, who battled hepatocellular carcinoma (HCC) before passing away, Wilson Woods recognized the need for resources in this area. Blue Faery offers a range of educational materials, online community forums, and advocacy support to help patients navigate the complexities of liver cancer treatment and care. The organization also focuses on HCC prevention through educational workshops and encourages patients to become effective advocates for themselves. Wilson Woods emphasizes the importance of having a designated advocate to help patients navigate the health care system and ensure they receive the best care possible. They can also voice concerns when something is unclear or doesn’t feel right.
“I believe that every patient doesn’t necessarily need a formal patient advocate, but they do need someone to stand by them and fight their battles for them,” stated Ms. Wilson Woods. “Their main focus should be on healing, feeling better, or reaching the next milestone.”
Tips for Making Informed Decisions
Whether you are the patient or a caregiver for a loved one facing a serious illness, it is essential to ask questions and gather all the necessary information to make informed decisions. Here are some helpful tips to keep in mind:
1. Research in Advance:
Take the time to educate yourself about the condition and available treatment options. Familiarize yourself with the details of any relevant insurance coverage and understand how billing works.
2. Ask Questions:
If you are assisting a loved one, make sure to understand their health condition and inquire about their personal preferences and concerns. Deb Gordon, co-founder and CEO of Umbra Health Advocacy, advised, “To advocate for a loved one in their healthcare interactions, it is crucial to start by understanding their wishes, priorities, and concerns. Focus on their questions during healthcare visits or hospital stays.”
Do not hesitate to request clarification or ask for medical jargon to be explained in simpler terms.
3. Maintain Organized Records:
When dealing with multiple healthcare providers, it is vital to keep records organized and easily accessible. Ms. Wilson Woods suggests patients manage their records in a traditional way by printing copies of appointment summaries and prescriptions and storing them in a binder.
“It’s important to print everything out,” she emphasized. “Every single detail. By putting them in a binder, it can accompany the patient wherever they go. This binder is invaluable and contains all the necessary information.”
Being well-informed will make planning for appointments more straightforward. Ms. Gordon added, “Remember that healthcare visits are often brief, so prioritize your questions or topics of discussion. If time is limited, ensure you cover the most significant points. Be respectful, seek clarification, listen attentively, and advocate for your loved one who may not be able to do so themselves.”
Advocating for yourself or a loved one is a crucial aspect of ensuring the best possible healthcare experience, fostering a fully informed patient and a collaborative partnership between patient and provider.
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