Patient Advocacy Options

[GigglyGrinch]

I've been thinking a lot about starting some kind of patient advocacy site of some sort. I don't really know if it's even possible or a good idea. When I got diagnosed with a brain tumor, we used to get what medical records when we could. We would notice all kinds of things from stuff they hadn't told us to inconsistencies with where the brain tumor was located. Then throughout the years I would talk to fellow patients. I'd hear them say they'd been prescribed a medicine but didn't know either what it was for or what it was called or both. People would have questions they needed answered, but would either just not ask the doctor or be so rushed in an appointment, simply not have a chance to ask. (This all goes for me as well.)

Something else that's bothered me is how doctors' office staff can be down right mean. I've called and called offices and have MA's (Medical Assistants) never tell the doctor I've called. I've been blown off by receptionists, ignored by doctors, and completely irritated with how offices are run.

I had to go to the ER tonight because of severe pain in my wrist/hand. I know I have carpal tunnel and I was recently referred to an orthopedic doctor for both hand/wrist pain and the problems I'm having in my knees. I'm not supposed to see the orthopedic surgeon until January 7th. They told me that they'd only address one thing at a time and asked which I'd like to discuss first. At that time my knees were the bigger of my problems. The past couple of days, though, the pain in my hand and wrist has become unbearable. I was sort of wondering if I might have started up with RA or something because I'd never had this pain before.

The doctor in the ER said that my carpal tunnel has just gotten very bad and that I'm going to need surgery. Great. Surgery number 11 and I'll probably need another on my knee. The orthopedic doctor's office staff (at least at the office I'm going to be seeing him) is very rude. Lovely. I'm SO looking forward to talking to them again. The doctor said that he would have tonight's visit transcribed and sent to both my primary care doctor's office and the ortho. Maybe they'll see me before January 7th? I suppose one could always hope. I'm practically an invalid right now. I'm right-handed and that's the one that's hurting. I had to sign everything left-handed and just getting dressed is a chore. Thankfully my mom came over and is going to stay a couple of days to help me out.

I mentioned my ER visit to say this: I saw someone in there that I've known for about 20 or so years. I found out that she's got cancer. She's getting radiation. She was in Kaiser and had to go to UCLA. (I can't remember the reason, but it had to do with her insurance.) She had to pay out-of-pocket for the UCLA visit(s). She has two children and can't work. She's contacted the American Cancer Society and they won't help her with anything. This surprises me because they were wonderful to me when I had cancer. She's being turned down for any kind of general assistance from welfare. Social Security and whatever else she's applied for has denied her. She has a host of other problems as well. I suggested she get a lawyer to fight for her.

Is there some way to set up a site to give patients information on how to be more proactive in their healthcare? Maybe even a way to inform someone like my friend on how to/what to do to be able to get on some sort of disability. I'd love to be able to tell/teach/help people how to find out all the information they need to know about how they're being taken care of. I want people to be empowered and know that they have the right to get their medical records and find out what's really going on with them.

Do any of you have any ideas?

[winr]

Best wishes on your medical problems Heather and healing thoughts your way.

Reading how bad in can be to get medical help is scary, what you are contemplating sounds like a great idea for people who dont know what to do or where to turn.


Richard.

[GigglyGrinch]

Best wishes on your medical problems Heather and healing thoughts your way.

Reading how bad in can be to get medical help is scary, what you are contemplating sounds like a great idea for people who dont know what to do or where to turn.


Richard.

Thanks, Richard. (IMG:style_emoticons/default/smile.gif)