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Ivan, To put it crudely Sh-t or get off the pot. It is clear that NPF is not going to admit liability and that their role in this is likely comparatively small. Your strategy of holding a trial by internet to put pressure on NPF has not worked. Dr. Sanchez-Ramos is responsible for the actions of his employees as is the U of Miami. His apt with you appears to have had no official connection with NPF. Either file a law suit on a contingency basis against Dr. Ramos and the clinic and possibly NPF depending what comes out in discovery and their malpractice insurance will cover any award or let it go. Even though you have been wronged continued complaining about it here on the list is unlikely to help you or change anyone's mind on the list or at NPF. Charlie Ivan M Suzman wrote: > > ^^^^^^GREETINGS FROM^^^^^^^^^^ > Ivan Suzman 47/10 [log in to unmask] > Portland, Maine land of lighthouses 48 deg. F continued magnificent > fall colors > *********************************************************** > > Dear LIstfriends, > > I am writing in response to the NPF's official letter on the subject > of my abandoned appointment. > > After 2 and 1/2 years, the NPF in Miami has finally responded , > through its Public Relations Director, Melinda Brown. She has sent us a > message to this List, regarding the $2,200.00 demand for compensation I > am firmly making, because no doctor showed up for my May 17,1995 > appointment at its Clinic in Miami, Florida. > > I had made a 3,000 mile, multiple stop, round-trip by airplane, > accompanied by a Certified Nurse's Aide. The still-unexplained > abandonment occurred despite THREE confirmations its staff had provided > to us at our nearby hotel room. > > Please accept my apology for the slight delay in responding to the > NPF, Ms. Brown and the Listmembers worldwide. I found her message to us > shortly after returning home, when I got up from a nap and turned the > computer on. > > I had been away for the weekend, with a personal care attendant on > > 24-hour duty, for a sorely needed rest, at a United Church of Christ > lodge and retreat center. > > Unfortunately, Ms. Brown's response extends my battle further, > and refuses to acknowledge any responsibility for payment to me.. > However, it does admit and disclose, whether fairly or not, that a > secretary employed in the NPF building was supposedly guilty of a > scheduling error. The NPF seems to blame her for my ordeal. > > Ms. Brown's letter to us provides a number of statements and > assertions which I address below, in sequence, extracted from her letter > to us. > > I continue to seek compensation from the NPF for only $2,200. I am > firmly asking for that amount to recover the full cost of having sent an > around-the-clock Certified Nurse's Aide and myself from Maine to Miami. > The $2,200 in expenses covers only the two nights and three days needed > for purely the NPF-related portion of the multi-purpose trip that was > taken by the two of us. > > I note that the stance the NPF now takes does not seem to recognize > the time, expenses and energy I have had to devote since 1995 to pursuing > what, for a multi-million dollar organization, is a tiny amount of money > to reimburse. > > I add that I am meanwhile a tired, severely-disabled younger PWP. At > age 47, I am living from month to month, uncertainly, on $664.00/month > of social security. I am not asking for full compensation. I do > believe that my request for $2,200.00 is very, very modest, and extremely > reasonable. > > Ms. Brown's statements are excerpted and quoted here, along with my > responses. > > On Fri, 17 Oct 1997 17:03:33 -0400 Melinda Brown > <[log in to unmask]> writes: > 1) >I must state that the National Parkinson Foundation does not have > paid physicians on it's staff. > > MY RESPONSE: My appointment was set up by NPF staff, confirmed > twice by Mr. Pearson of the NPF staff, as well as once by the clinic > secretarial pool. It would have taken place in the NPF building had any > doctor been available. None were. > > Moreover, at the time of the deserted appointment, Dr. Sanchez-Ramos > was the Editor of the NPF Report magazine. This leaves almost anyone > the impression, coupled with scheduled appointments he has in the NPF > building, that he is ,at the very LEAST, an NPF employee!! Noone had > told me otherwise. > > I question whether any PWP would have even considered whether > Dr.Juan Sanchez-Ramos's association with the University of Miami or with > Jackson Hospital, which I did not know about, is really the issue here.. > Until 18 months after the May, 1995 trip, noone, including the doctor > himself, ever told me that he wasn't on the NPF staff. It sure looked > like it to me, the CNA with me, and the medicaid-funded personal care > attendants back home in Maine. > > So to try to shift the blame to the Univ. of Miami, or Jackson > Hospital, neither of which had ever telephoned or contacted me, is > unfair to the University, to the Hospital and to me. It was the NPF which > offered, handled and confirmed my appointment. > > -- Melinda Brown writes: > Dr. Sanchez-Ramos' secretary who made the > scheduling error was a UM employee. > > MY RESPONSE: > Again, I had no way of knowing this. The point is, both the two > clinic secretaries who confirmed on Monday, May 16, 1995, my appointment > at the NPF clinic scheduled for the next day, and the administrator (Mr. > Pearson) who re-confirmed it on Tuesday, May 17, and who, in that > re-confirmation call, asked if I could shift our preceding 11 AM > appointment to tour the NPF research faciliies to 1PM, and who later > re-confirmed again, assured us that Dr. Sanchez-Ramos was ready to see me > for about 90 minutes, at 2PM, never mentioning the University of Miami. > > So why shift the blame to a University to which I never spoke. > And I will comment on the alleged "secretary who made the error" below. > > --- Melinda Brown writes: > It was unfortunate that he could not > have waited the > >2.5 >hours that it took for Dr. Ramos to get back to the building and > that >he > >had to miss out on seeing him. > > MY RESPONSE: The decision to leave the clinic was made among Mr. > Pearson of the NPF, my CNA and myself. Quite to the contrary to the > above suggestion, I did NOT make any decision alone! > > Mr. Pearson told us that Dr. Sanchez-Ramos had supposedly NOT yet > been located when my CNA and I left the parking lot of the NPF, at > about 3:25, 1 and 1/2hours after the 2 PM appointment. > > Mr. Pearson escorted us outside to the sidewalk, saying that "perhaps > I'll see the doctor walking down the sidewalk from the hospital!" > > Can any Listmembers IMAGINE the anger and disgust I was feeling?? My > CNA told me at that time that he was "totally disgusted with the NPF!" > > It had been left to the NPF clinic secretaries and Mr. Pearson to make > calls to the hospital. I wondered if the NPF has asked Dr. Sanchez-Ramos > to see hospital patients that he could write about in the NPF report, > instead of keeping appointments for new patients like myself. > > My CNA and I both wondered painfully why a multi-million dollar > Parkinson's Foundation wouldn't be organized enough to DEFINITELY inform > me where Dr. Sanchez-Ramos was. They certainly knew that we had > travelled 1500 miles from Maine. I had talked to their offices at least > fifteen times, before deciding to invest in going to Miami. > > Finally, the NPF secretaries, who had earlier SHOWN Mr. Pearson, the > CNA and myself the printed schedule of afternoon appointments, including > mine at 2:00 PM, seemed to have indicated, according to Mr. Pearson, > that the clinic may have cancelled Dr. Sanchez-Ramos schedule > Sanchez-Ramos FOR THE REST OF THE DAY.. > > That is QUITE different from my being blamed for not having the > patience to wait 2.5 hours, 'til 4:30. There was NO promise of an > appointment at 4:30, just conjecture! > > Ms. Brown may have been told by NPF officials that Dr. > Sanchez-Ramos returned at 4:30 to the NPF building. But as far as I knew > when the CNA and I left, there was only the suggestion that Dr. > Sanchez-Ramos "might" be at Jackson Hospital, according to Mr. Pearson. > > --- Melinda Brown writes: > >(Let me make this clear - Had Mr. Suzman waited, he WOULD have seen >the > >DR., BUT he CHOSE to leave because he had dinner plans with his > >father.) > > MY RESPONSE: > > Even if I had waited, and even if the doctor purportedly showed up at > 4:30, I would have been finished at perhaps 6:00 - 6:15 or later. And > if he really showed up at 5 or 5:30, maybe at 7:00, I might have been > finished seeing him, long after the clinic and the building was shut > down, and with only security guards around, and in a late afternoon state > when I normally need to sleep! > > Weighing against waiting three hours for a doctor whose whereabouts > were unexplained were factors such as: > > a). A dinner appointment with my ailing dad and step-mom, at 6:00 > in Palm Beach, 90 minutes drive north in rush-hour traffic; > > b) Torrential thundershowers and blinding road conditions, in an > area unfamiliar to the CNA and myself, making travel slow and difficult; > > c) The time needed for me to rest before being picked up by my > parents to go to eat; > > d) Dinner reservations my dad had arranged for the four of us; > > e) The need for me to be in bed by 8:30 to get up at 4:30 for a > return trip beginning in West Palm Beach Airport at about 8:00 AM the > following morning; > > f) My dad's schedule of medications and rest, and mine; > > g) The time needed to check into a motel room (the Hawaiian in > Palm Beach), shower, rest, take medications, and get dressed to go to > supper at 6:00; and to arrange morning departure; > > h) Time to return a rented car > > i) Adequate time to discuss the options and arrangements the > NPF doctor suggested regarding long-term medical treatment during the > winter months, if I moved to Florida, includin possible pallidotomy or > other procedures before my dad, who had had both cancer and heart > surgery, was too tired to continue. > > --- Melinda Brown writes: > >I hope that Mr. Suzman will be able to stop dwelling on a situation > >that>occurred well over 2 years ago.. > > MY RESPONSE: > > I am not "dwelling" on the situation. I am fighting for my money back > for services not provided!! > > ---Melinda Brown writes: > > ... we do not feel we are responsible for the scheduling error >made > by>Dr. Ramos's secretary. > > MY RESPONSE: > > Your claim that if she (or he) REALLY was at fault remains unproved. > Name the secretary to me. > The NPF says the secretary allegedly works for the U. of Miami, but I > wonder WHO types his contributions as Editor of the NPF Report. > > Is this secretary therefore an NPF employee, part-time?? > > Who pays her for that work?? > > And if the University of Miami is REALLY to pay me, why hasn't the > NPF, in order to HELP one of its patients, pushed the University > officials to help me?? > > ---Melinda Brown writes: > > >That stated, I do not feel that NPF should deduct valuable money that > >has > >been donated to the Foundation for the purpose of conducting research, > >promoting education and funding therapy treatments, to compensate an > >individual who had a misfortunate happening ... > > MY RESPONSE > > How much does the NPF value the trust of the Parkinson's > Listmembers??? > I am sure there is a line-item somewhere, or a category, for > reimbursement. What about, as you say above, "funding therapy > treatments"? > > ---Melinda Brown writes: > > ...and that he will start focusing his energy...on positive... > > MY RESPONSE > > This obvious attempt to sweep under the table, UNRESOLVED, my petition > to you for proper restoration of the investment I made in going to the > NPF is what is creating the problem in the first place. > > If the NPF would either pay me back, or exert pressure on the > University of Miami, or > someone whose budget includes discretionary funds to be appropriated for > unusual situations, to pay me, the issue would be OVER. > > I try to be a positive person, and feel absolutely no need to defend > myself against the intimation or allegation that I need to refocus my > energies, as if they were too negative!! > > Let me close by saying to the NPF, in the spirit of positive and > mutual cooperation, that you know I am fully aware of the NPF's role in > helping to find a cure for Parkinson's. That is precisely why I implore > you to take care of business, so that I won't have to end up feeling > cheated, ignored and abused by the Foundation. > > This is a feeling now shared by a now rapidly-growing body of 1500 > -1600 Listmembers. The longer the NPF draws out the ordeal, the longer > we all suffer. The NPF has the power to find the money to pay me back, > and should do so as quickly as possible. > > At issue here is not only my own horrific ordeal with the NPF, but > the reputation of the Foundation. > > If I were a PWP elsewhere, reading about Ivan Suzman's plight, I > would reconsider carefully any further plans to be seen at the NPF > clinic. If I were a donor, I would back off from any contributions. > > I sincerely hope you will convey, Melinda, my anger at the NPF's > unfeeling decision to continue to avoid helping repay me to your > President and to the Chairman of the Board. > > I hope that your next post to the list will reflect a reversed > viewpoint, and a willingness to settle IMMEDIATELY, so that most of all, > I personally can devote my precious energy to the rest of my life, free > of the encumberment the NPF continues to cause. > > Ivan M. Suzman, 47/10 > Portland, Maine -- CHARLES T. MEYER, M.D. Middleton, WI [log in to unmask]