I'm giving a speech about patient advocacy in June. The other attendees are all medical providers who specialize in HCC. From hepatologists to oncologists in the US and Europe, they all see HCC patients every day.
My question to you is
+What do you want them to know?
+What could they do to make the HCC patient journey better?
+Is there anything you wish your doctor had told you in the beginning?
I appreciate your feedback and will do my best to incorporate it into my talk though I promise not to use your name.
This is so great that you're participating in this Andrea. I looked at the program and it looks great. Lots of good speakers and information sharing. It's so important that amidst all that information is someone speaking out for the patients and caregivers and what we need. Thank God we have you to be our voice. Thank God there are some companies out there that realize that our voice is needed to make changes and are willing not only to listen but to actively pursue it. I'll send you an email with my wishes for your speech. Knowing you they're already in it. ❤️Much love to you for all you do each and every day.
Hi Andrea! Please tell providers that we have a right to see our test results as soon as they are available. Waiting until some doctor can manage to see us for a few minutes and review test results is a waste of time. We do want to go over results with doctor but having and digesting the results ahead of time gives us time to formulate questions and suggestions. We are not children. Thank you for all the advocating you do on our behalf!
Another thing, don’t take it personally when we come in confused, upset, cross and fearful. It has nothing to do with the healthcare provider. It is just the impossible circumstances we find ourselves in. Please don’t get mad.
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