Patient Advocates

[roger12]

I would like to share my experiences with a patient advocate that I hired, to assist me obtaining a surgeon who could help me in acquiring an ADR. I was very impressed with the medical knowledge, and contacts this person seemed to have, however after several weeks it became clear that there were stronger motives-$$$! I have come to believe that some of these people are way over their head, medically and should not be providing medical advice (even though they say they are not) Rely on REAL medical professionals, and get many opinions before any surgery.

[Justin]

Sorry about your unfortunate experience Roger.

Medical advice should come from medical professionals

You are exactly right--information on the Internet (this forum included) or from a patient advocate should never substitute that of a professionally trained physician.

Good luck with your journey, and hopefully there won't be any more bumps in the road.

Justin

[annapurna]

Advocates help when you have too complicated a case or too little time to do the research yourself. By hiring someone, you have someone available to you who can ask the doctor/surgeon/etc. the tough questions. They can't, as both of you point out, substitute for the competent medical opinion. You also can't afford to forget that even though the advocate is being paid by the patient, he/she probably has a long-tanding relationship with the doctor/surgeon/etc. The advocate is trying to be biased in the patient's favor but isn't always going to get there.

[B13s]

Medical advice should come from medical professionals

Unfortunately medical professionals are driven by money way too often as well...

[Terry]

I'm sorry this happened for you. Justin hit the nail on the head with seeking medical advice. While it's true that there may be some conflicts of interest that develop in the medical profession ethics are still an important consideration for many of us in the health profession.

This forum is a good resource tool but I view it as a support tool only. It is a means of disseminating research, information, and support for others who have been there or are getting there with their spinal disease.

Nothing can replace good sound medical opinions and second and third medical opinions as well.

Hang in there and by all means please let us support you in your journey as well.

Terry Newton

[Messy Spine]

Not sure if you are talking about the same dude-this GPN guy is nutty for sure. My sister spoke to him last year and almost hired him. But he talked like a doctor and said he scrubs in and does surgery. Sis did not like the high pressure sales pitch and talked to other folks about him. It was not good. I can share more by email.

[ans]

I'd be upset too at being "handled" as you describe.

This same person had devoted hours of time helping answer or re-frame my questions without me paying a cent. I guess I'm lucky here as I'm not a candidate with the means to pay out-of-pocket for a multi-level surgery.

I wish you well in your battle. - Allan

[JeffreyD]

Greetings,
There a a few folks out there describing themselves as Patient Advocates; I'm sure some are OK and some not....depends on the level of honesty of the person and ability to actually benefit the spine pain sufferer in his/her quest for an accurate diagnosis and all available treatment options.
Messy spine, since you have chosen to name GPN as a "nutty dude", and we all know who you are talking about,I am surprised that you are still allowed access to ADR Support.
I know there are times when folks on this site have done just the opposite; expressed their sincere appreciation for GPN and the honest help provided to them that those same folks have been 86'd for life for stating their opinion. I assume that the same protocol works for those expressing a negative and provocative opinion, correct?
Fair is fair I would think.
It's really too bad that it's OK to bash someone but not give the bashee an opportunity to respond. ADR support is all about a quest for truth in the ADR world, so I would expect that fairness would be the rule of the day here.
GPN provides services that have been helpful to me and many, many others.
If a person doesn't want to use another person's services they can choose not to use them; what a great idea??!!! No need to trash a good man's reputation when that same good man is not allowed to defend himself.


God Bless,
Jeff

[roger12]

But he talked like a doctor and said he scrubs in and does surgery. Sis did not like the high pressure sales pitch and talked to other folks about him. It was not good. I can share more by email.

Huge RED flag when a layperson speaks like this. Disturbing.
Some advocates provide one upfront fee, and are conduits to getting you to best. This was not my experience.

[Harrison]

Roger, sorry for your troubles. I pray you did not find this patient advocate on this forum for a long list of reasons!

I recently received a very troubling document (more of a novella) in which I was specifically attacked by the "consultant/broker/advocate" in question here. In this Word document (25 page discussion post) this odd man concocted a long discussion specifically about me, my character and my ethics. If that’s not enough, there are TWENTY-SEVEN false statements within this “discussion.” With the evidence I have, twenty of his silly statements are easily proven false in any court of law.

Even if any of these statements were true – why would any sane person go to such extremes to be proactively offensive? At least it shows the dark side that until now has been insidiously hidden from many people. However, there is at least one true statement, which explains his business motivations and frustration with not having access to spine patients from this community:

“…I already had well over 100 clients, most members of ADR Support…”

The fact that this man has gone to such great lengths to fabricate (at least) twenty-seven false statements specifically about me is so unbelievable on so many different levels; to me it is inexplicable and a bit surreal. But with his psychotic rants, in which he even taunts the legitimacy of the cease and desist order I sent him, he has managed to incriminate himself with contradictory “facts.”

Folks, I’ve had enough of this lunacy. Please, no more arguments of brokers or consultants in this community. Unfortunately, it detracts from the peace and energy that we need to maintain a supportive, caring and honest patient community. And by all means – if you are approached by any brokers by anyone from this community, please let me know.

Sorry for the interruption everyone. Let’s spend the energy helping each other!