1999 Medical Malpractice Conference A unique perspective being a board member of
FAIR of IL, This is what was outlined to me prior to the conference. Friday - August 27th - "victim rally" in front of AMA and *advocate meeting with the "AMA" which was moved up from Monday. Saturday – August 28th - "victim impact forum" Sunday – August 29th - a meeting of the "groups" to discuss the "possibility" of forming some sort of "national alliance". Monday – August 30th- Original date advocates were going to meet with the "AMA" (this meeting got moved to Friday evening along the way) There was some comments and concerns that this "meeting" got moved up – this didn’t give anyone time to meet or discuss what was going to be discussed at this meeting… THE RALLY – Friday morning On 8-27-99 a rally was held in from of the AMA building. This was attended by about 60 people, media and at least 3 legislators. The rally lasted about 2 hours. We all had signs and many people spoke. Illinois representative Mary Flowers spoke eloquently on medical malpractice and the need for more and better laws that will protect patient’s rights. This rally alone is a big statement for the medical community. It shows that we (organizations/groups) are willing to come together to show a united front, and the medical communities see this. In my opinion, the rally was a huge success. THE MEETING WITH THE *"AMA" – Friday afternoon It appears that not everyone went to this meeting with all of their cards being laid on the table. Some of these facts I knew before this date, others I learned afterwards. This meeting with the "AMA" was attended by: Linda DeBenedictus & her husband (New England Patients Rights), Arlene Salamander (FAIR of IL), Ray McEachern and his wife (ARM of FL), Debra Dixon and her husband (VJC), and Dr. Ralph Speken (who has a suit filed against another doctor, claiming that this doctor’s actions caused his sons death. The defense states otherwise. Dr. Speken had a site up with the court papers from his case presented and links to laws stating his right to do this, etc… but we are told that the defense got a court order to shut his site down). I had requested that I be able to attend this meeting along with Dr. Hufnagel, not on behalf of FAIR, but on behalf of the CPT Women but was told "no" by Dr. Ralph Speken. (Below is the letter I received by him in response to my request) Dear Susan - By him I was told that it wasn’t possible, but by others I was told that it was him who didn’t want us there, that he in fact didn’t want any other groups there at all with him at this "meeting". (Regarding my request that I be allowed to attend this
meeting I received the following letter) (In response to Dr. Speken’s letter telling me that
they will not discuss the issue further…I was told…) Since Ralph told me that I’d be able to meet with these people from the "AMA" on Saturday at the time of the forum I, (like a good little girl), didn’t make a fuss about attending this meeting. I figured I’d have my own quick 5minute meeting with them on Saturday. Still, being informed that Ray and Ralph didn’t want anyone else to attend this "formal" meeting seemed very odd to me. Why wouldn’t they want anyone else there? FAIR was not told until the very last minutes were this meeting was going to be held. Ralph handed Arlene a copy of a letter he received about this meeting at the August 27th rally. This letter was dated August 13th and explained everything...whom they are (more about this below), etc… This letter should have forwarded immediately to FAIR when he received it, but it wasn’t. Ralph had set up this meeting, and from an email Arlene received much later, it was CC’d to all, but FAIR (Arlene) never received it. Arlene told me, "God only knows what he told them…" At the rally, she was "told" to go to Marriott hotel near the airport on Higgins Road. She told me, "(I was given) no directions...no address...it was ridiculous. I'm not familiar with that area and we became lost. I believe Ralph kept this information (the letter, the meeting location) to himself with the purpose of controlling and deceiving us." Since Ralph would not allow me to "attend" this meeting on behalf of the Coalition for PT Women, and after being told that he didn’t want anyone else there (including FAIR and other groups) I made it very clear to Debra D. of VJC, and to Arlene S. of FAIR that I don’t know this person, and that he is in no way representitive of the Coalition or me. Knowing that FAIR would be present at this meeting, I felt confident that Arlene would represent the best interests of not only FAIR, but also for the CPT Women (she understands the TL issues of informed consent, and how not diagnosing our conditions can lead to further harm, etc…). By the time everyone got to this meeting (or at the meeting) it was learned by all present that Ralph and Ray mis-represented whom the advocates were going to be meeting with. They made it appear to everyone involved that they, along with other victims advocates (FAIR, etc…) would be meeting with the "AMA". *It was not the AMA they set this meeting up with but the National Patient Safety Foundation (NPSF). These two groups are completely different and they know the difference between the two groups. In all e-mails and in all communication to everyone involved they stated that this group was the "AMA". Even Debra D the organizer of this event was lead to believe that they were meeting with the AMA. The NPSF is an organization that is funded by the AMA, and in turn funds other groups. It was mentioned by someone who was present at this meeting that the group from the NPSF seemed a little confused as to why they were requested to meet with this group of advocates. They explained to everyone there that they are not the AMA, they are the NPSF, and they receive 1.2 million dollars in funding a year from the AMA. They in turn fund studies, etc… No one knew this expect for Ray and Ralph before the
meeting. Debra Dixon reports that the meeting started off o.k. Linda was promoting tracking of errors etc. Ray presented a booklet of legislative issues but he didn’t have enough for any of the other "advocates there" so Martin Hatlie of the NPSF gave Debra Dixon his copy. Debra noted that the cover read: National Patient's Rights Alliance-National Legislative Issues. Debra (VJC) when seeing this clarified that a National Alliance does not yet exist and was only a goal. She went on to explain what VJC had presented as being some goals – information that VJC had circulated to the victims/advocates/survivors "publicly" prior to the conference. VJC agenda mentioned the need to prosecute "criminal behavior". Arlene Salamendra asked if they thought a doctor’s behavior could ever be considered criminal. No one from the NPSF answered her. It’s reported that when they got to a discussion point that Ralph Speken promoted a no-fault, loser pays med mal system. Arlene (FAIR) immediately stated that she had to make it very clear that the ideas being presented here were in no was representative of FAIR, etc… I can’t comment or say much more about what happened or what was said at this "meeting" since I wasn’t in attendance. I feel Ralph and Ray used all the other groups involved to show "support" in their "national alliance" idea, as if it was already agreed upon and presented to all, when in fact everyone but them walked into that so called "AMA" meeting blindfolded. They knew that this was not the AMA, but made it appear to everyone else that they were. This may have been a factor in why Ralph and Ray didn’t want any other groups to attend this meeting. In my opinion they didn’t want anyone there because they didn’t want anyone to know what was being said or presented. They didn’t want anyone objecting, changing the subject, or taking time away from their issues and things that they wanted to present to them…(possibly they want funding "money"?) I'm upset that Dr. Ralph Speken and Ray mis-represented facts and information to me, to the CPT Women, to FAIR, to Debra Dixon of VJC, to the NPSF, and so on down the line. I personally didn’t learn that the 3 representatives who were at the impact forum were with the NPSF (and not with the AMA) until I went up and introduced myself and ask about their affiliation with the AMA. Saturday 8-28-99 The Victim Impact Forum began Saturday morning at 11:00. 3 of the 4 "delegates" from the NPSF who were present at the meeting the previous day attended along with maybe 35 other people/victims/advocates. There were 3 or 4 tables set up with literature about the different groups. Presenters were: I have a hard time describing the impact forum. I have never been to a victim impact and the whole thing was very moving. It was noted at one point that for every victim present all we needed to do was to multiply the number by the thousands to understand how many have been injured or is suffering. Victims of med mal suffer much more harm then just physical pain. They also suffer post tramadic stress syndrome (I know I have) and more. It’s something that they must live with for the rest of their lives. Summing up the rally and the victim impact forum Over all, it was good for some of the groups to get together and meet and find out more about each other. Things like who they are, what is their agenda, and priorities, and to learn what they are doing in their state... what works, what didn't, etc. Saturday night, Sunday Morning There was a short, unproductive meeting Saturday evening, and a more formal meeting on Sunday morning. (Sunday was the day others and I were told that groups were going to meet to look at plans or an outline about the possibility of a national alliance being formed) The meeting on Sunday morning was more productive and less hostile. There were maybe 16 - 21 people in attendance. We went around the table with everyone getting the opportunity to speak about the conference and about some of the issues that arose and about some of the issues at hand. I did not, nor do I believe anyone did, leave that meeting with any sort of outline or plan for a national alliance. (Expect maybe Ray-) Ralph was not in attendance at this meeting. Final thoughts FAIR will be holding a Board meeting the 16th of this month. I may be able to update, or include FAIRs report to everyone at that time. I personally, as a member of the Coalition for Post Tubal Women, and as a board member of FAIR of Illinois, will never support Ralph Speken, or what he promoted… a "no-fault, loser pays" med mal system. This is nuts that he even suggested it. I have no idea who he is and I have no idea what he was thinking. I will never support people or idea's of this nature. I am upset that Ray and Ralph excluded the Coalition from this so called "AMA" meeting, and that they presented themselves to all in the fashion that they did. Still, I do have much respect for what Ray is doing with ARM in FL. (See http://www.A-R-M.org) As far as the direction that the Coalition for Post Tubal Women will now go, it’s the same, but better. We are now better organized and moving forward. Monday night was spent outlining work that must be done in the next 6 months, and we are getting stronger and more organized as we go. We know what we must do (create laws) and that is our focus.
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