Re: Discussions regarding specific doctors, hospitals, organizations

[Guest guest]

Sorry Ursula...

No Offense taken and understand completely. This was our experience and this man

is well liked by others, and I am glad he has benefited others. There will be no

more replies on this from me.

Missy

From: Ursula Holleman <uahollem@...>

Subject: Discussions regarding specific doctors, hospitals,

organizations

Date: Saturday, December 27, 2008, 12:43 AM

I'm trying to think how to tactfully tell people they shouldn't post negative

comments about anyone on a public email list. On top of that this list is not

here to berate or promote any one doctor, organization, or hospital.

Please feel free to post questions regarding any of the above but responses

should be sent privately and off list. Any responses sent through the list

should be limited to name and contact information. Additional information about

which PID's specifically are dealt with can be ok.

I think the group will serve a much better purpose if the discussion of this

particular doctor is stopped.

Ursula - moderator cap ON

[Guest guest]

Sorry! Guess I was just glad to hear I wasn't the only one. I'll

email my opinions off list from now on.

Becki

>

>

> I'm trying to think how to tactfully tell people they shouldn't

post negative comments about anyone on a public email list. On top

of that this list is not here to berate or promote any one doctor,

organization, or hospital.

>

> Please feel free to post questions regarding any of the above but

responses should be sent privately and off list. Any responses sent

through the list should be limited to name and contact information.

Additional information about which PID's specifically are dealt with

can be ok.

>

> I think the group will serve a much better purpose if the

discussion of this particular doctor is stopped.

>

> Ursula - moderator cap ON

>

>

>

>

>

>

>

>

[Guest guest]

Ursula , Can you please explain to me why you do not want this discussion to

occur? I am surprised with your position as a nurse that you are uncomfortable

with the discussion.

I am concerned that people have a healthy forum to express their concerns

regarding a specific physician when it is repeated over and over. By stopping

this discussion it just perpetuates the " power " of this physician that may be

providing a major disservice to the field. One persons experience is one thing

but a repeated problem needs to be aired and the people experiencing it need to

have the support to make a means to report the concerns. Keeping our experiences

in the dark only makes it fester and makes each of the parents feel alone and

almost crazy about feeling the way that they do. If we share them then others

can see and in some circumstances give a good explanation or another reason for

the experience. I have not heard anything from anyone maligning him but only

expressing their personal experiences and concerns. How can any of us feel

confident to see physicians if there is no where to get references. Especially

if we cannot have this

discussion on a support group for immune deficiencies. This is not a

professional organization where we need to uphold a standard of supporting all

doctors like the IDF. I just respectfully say that I do not understand your

position yet please kindly enlighten me. Is there another way to share these

concerns that I may be missing?? BARBIE

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Saturday, December 27, 2008 12:43:37 AM

Subject: Discussions regarding specific doctors, hospitals,

organizations

I'm trying to think how to tactfully tell people they shouldn't post negative

comments about anyone on a public email list. On top of that this list is not

here to berate or promote any one doctor, organization, or hospital.

Please feel free to post questions regarding any of the above but responses

should be sent privately and off list. Any responses sent through the list

should be limited to name and contact information. Additional information about

which PID's specifically are dealt with can be ok.

I think the group will serve a much better purpose if the discussion of this

particular doctor is stopped.

Ursula - moderator cap ON

[Guest guest]

Barbara - my position on this list is not as nurse. I do not want to be known

on here as a nurse. I am mom and occasionally moderator. The discussion

borders on slander. This list is not private. Any post can and has been used

against people in the 10 years it's been in existance. The discussion lately

hasn't been healthy, it's been clearly stated that people do not agree with this

particular physician's way of doing things. The opinions probably for the

safety of the posters should have been expressed privately. A short note to the

group to say that you don't agree with his way of doing things would have

sufficed.

Share them directly to the original poster. Enough said.

Ursula

@...: mother5590@...: Sat, 27 Dec 2008

10:14:17 -0800Subject: Re: Discussions regarding specific doctors,

hospitals, organizations

Ursula , Can you please explain to me why you do not want this discussion to

occur? I am surprised with your position as a nurse that you are uncomfortable

with the discussion.I am concerned that people have a healthy forum to express

their concerns regarding a specific physician when it is repeated over and over.

By stopping this discussion it just perpetuates the " power " of this physician

that may be providing a major disservice to the field. One persons experience is

one thing but a repeated problem needs to be aired and the people experiencing

it need to have the support to make a means to report the concerns. Keeping our

experiences in the dark only makes it fester and makes each of the parents feel

alone and almost crazy about feeling the way that they do. If we share them then

others can see and in some circumstances give a good explanation or another

reason for the experience. I have not heard anything from anyone maligning him

but only expressing their personal experiences and concerns. How can any of us

feel confident to see physicians if there is no where to get references.

Especially if we cannot have thisdiscussion on a support group for immune

deficiencies. This is not a professional organization where we need to uphold a

standard of supporting all doctors like the IDF. I just respectfully say that I

do not understand your position yet please kindly enlighten me. Is there another

way to share these concerns that I may be missing?? BARBIE

________________________________From: Ursula Holleman <uahollem@...>To:

@...: Saturday, December 27, 2008 12:43:37 AMSubject:

Discussions regarding specific doctors, hospitals, organizationsI'm

trying to think how to tactfully tell people they shouldn't post negative

comments about anyone on a public email list. On top of that this list is not

here to berate or promote any one doctor, organization, or hospital. Please feel

free to post questions regarding any of the above but responses should be sent

privately and off list. Any responses sent through the list should be limited to

name and contact information. Additional information about which PID's

specifically are dealt with can be ok.I think the group will serve a much better

purpose if the discussion of this particular doctor is stopped.Ursula -

moderator cap ON

[Guest guest]

Actually this concerns me greatly. It is hard to build a good network

of doctors, and part of what makes it so hard is that we are

conditioned to not question or challenge doctors. It is not slander

or even bordering on slander to share a personal experience, even if

it is negative. And that experience could save another family time,

money, stress, and, in some cases, a life.

Our first experience with an immuno. was horrible. He is a nationally

respected physician and it left us wondering if our experience was a

fluke or if our judgment was off or if maybe we were seeing things

that weren't there. Then, I joined this list and did a search and

another mom in this area had an older post whose experience was

nearly identical to ours. I needed to read that. It reminded me of

the need to advocate for my son as well as importance of not allowing

myself to be intimidated. That mom is no longer posting on the list;

I asked about the specific doctor when I joined and got no response.

I *needed* that old post.

On another list, I learned that the gastro practice we first used has

a long history of being dangerously ineffective with children who

have the same issues as my son, and, from that discussion, we got a

recommendation for an incredible gastro. That single discussion may

well have saved my son's life because the pattern of treatment we had

been seeing w/in the first gastro practice matched the pattern others

had experienced.

You don't know who is going to join this list, frustrated, scared,

intimidated and overwhelmed. Parents need this kind of networking. We

need to be empowered as a community in order to advocate for our

children, and part of that empowered includes recognizing a pattern

that suggests that a doctor or a practice is potentially dangerous or

ineffective.

(the other) Missy

[Guest guest]

I need to clarify that I have never had ANY experience with this doctor but am

concerned for those that have. I have had MANY experiences both personally, with

my children and professionally that I do not respect in our current health care

system in America. And it is my opinion that it is an extremely difficult place

for parents to try to navigate with a sick child. I guess I will have to leave

it where it is and change the subject since you are clear that you do not want

it discussed.

BARBIE

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Saturday, December 27, 2008 12:55:15 PM

Subject: RE: Discussions regarding specific doctors, hospitals,

organizations

Barbara - my position on this list is not as nurse. I do not want to be known

on here as a nurse. I am mom and occasionally moderator. The discussion

borders on slander. This list is not private. Any post can and has been used

against people in the 10 years it's been in existance. The discussion lately

hasn't been healthy, it's been clearly stated that people do not agree with this

particular physician's way of doing things. The opinions probably for the

safety of the posters should have been expressed privately. A short note to the

group to say that you don't agree with his way of doing things would have

sufficed.

Share them directly to the original poster. Enough said.

Ursula

groups (DOT) comFrom: mother5590 (DOT) comDate: Sat, 27 Dec 2008

10:14:17 -0800Subject: Re: Discussions regarding specific doctors,

hospitals, organizations

Ursula , Can you please explain to me why you do not want this discussion to

occur? I am surprised with your position as a nurse that you are uncomfortable

with the discussion.I am concerned that people have a healthy forum to express

their concerns regarding a specific physician when it is repeated over and over.

By stopping this discussion it just perpetuates the " power " of this physician

that may be providing a major disservice to the field. One persons experience is

one thing but a repeated problem needs to be aired and the people experiencing

it need to have the support to make a means to report the concerns. Keeping our

experiences in the dark only makes it fester and makes each of the parents feel

alone and almost crazy about feeling the way that they do. If we share them then

others can see and in some circumstances give a good explanation or another

reason for the experience. I have not heard anything from anyone maligning him

but only

expressing their personal experiences and concerns. How can any of us feel

confident to see physicians if there is no where to get references. Especially

if we cannot have thisdiscussion on a support group for immune deficiencies.

This is not a professional organization where we need to uphold a standard of

supporting all doctors like the IDF. I just respectfully say that I do not

understand your position yet please kindly enlighten me. Is there another way to

share these concerns that I may be missing?? BARBIE ____________ _________

_________ __From: Ursula Holleman <uahollemmsn (DOT) com>groups (DOT)

comSent: Saturday, December 27, 2008 12:43:37 AMSubject: Discussions

regarding specific doctors, hospitals, organizationsI' m trying to think how to

tactfully tell people they shouldn't post negative comments about anyone on a

public email list. On top of that this list is not here to berate or promote any

one doctor, organization, or

hospital. Please feel free to post questions regarding any of the above but

responses should be sent privately and off list. Any responses sent through the

list should be limited to name and contact information. Additional information

about which PID's specifically are dealt with can be ok.I think the group will

serve a much better purpose if the discussion of this particular doctor is

stopped.Ursula - moderator cap ON[Non-text portions of this message have been

removed][Non- text portions of this message have been removed]

[Guest guest]

It's not slander if it's true--keep any records if you need them to

prove what you're saying. Just because something said about someone

is negative, doesn't make it wrong to say it--it's only wrong, if it

isn't true.