View Full Version : patient advocacy
02-16-2009, 05:56 PM
I have an idea, would like to see how you all feel.
Wonder if our local lupus foundation groups, or even this forum, would be interested in forming a patient advocacy volunteer organization that can be called in to go with patients to dr. appointments to help with cases like Angel Oliver's where hospital has done her wrong, and her dr. is a heartless scab. If Angel had someone with her, I just don't think she would have been treated this way.
Don't know if it is plausible, but if it would work there are a lot of people who would benefit.
Thought I would throw the idea out there, and see where it goes.
share a smile today,
02-16-2009, 06:13 PM
Oh most definitely.I told my nurse today i need someone to be my voice as i have lost all my confidence completely. They will stick up for me and speak for me or ask questions for me if i am too scared to talk.If i would have had someone with me recently, i would not be so stressed out as i am now.Doctors intimidate me.She will let me know who and when.So i'll keep you updated.
02-16-2009, 09:17 PM
I just think this is so cool. What a wonderful thing this nurse has set up for you. I am so happy for you. You must feel like a huge weight has been lifted.
take care, glad we are all back,
02-17-2009, 05:26 PM
No i told the nurse this is what i need. She thinks there is some type of support group that does this out there.She was going to look into it and tell me in 2 weeks time how she got on.She seemed quite positive.Im crossing my fingers legs n arms now. I so need this now.You know when you've been weighed down and took the rubbish some people give you in life and just come to the end and hit that big fat brick wall? Well im there now. I can not face another Doctor, doing paperwork,drinking coffee and taking personal calls in my time again.I need help....im not invisible or a lost cause....i actually want to make the effort to get back out into the world, instead of living this hellish life ive got now, in pain and so alone....without a voice. I cannot stick up for myself now.The plan is in my head is....she gets someone to come with me at all medical appointments.The Doctors get to know the fact i never go alone.She or he will be my voice and put right any ignorance that goes on......then i start doing it on my own when im strong enough to cope with them.As soon i she lets me know i'll tell you. But yes.....it should be compulsory for people like us who get the ''oh its all in the head look''.
02-17-2009, 05:58 PM
that a girl....you fight for yourself....and remember you are not alone. We are not physically there, but we will do whatever we can to help. You will be strong...you will not believe that you have to take their bad behavior. My heart hurts so bad for you, but I am very proud of the strength that i hear in your words.