Dreams of Help Vanishing:
Many environmentally ill Nova Scotians are caught in a web of personal and political agendas, and are suffering unnecessarily. For many, the dream of real help from an Environmental Health Clinic has vanished. At the time of this writing, over 100 patients have brought their concerns to the Environmental Health Treatment Committee of the provincial Allergy and Environmental Health Association. Ninety-five of these were unsolicited, while five came in response to a small newspaper ad run by the NS Coalition on Environmental Sensitivity one day in mid winter. The following are examples of patients concerns: “I was taken off all my treatments that had been helping me, and was offered a mind body course which I had to pay for. I asked during the course if this was research and was told “yes”. I had not agreed to take part in any research.” “He was altering my IV ingredients without telling me. I am so sick now.” “I was taken off my treatments. I have been practicing the mind body work but I am getting weaker and sicker again. He tells me if I believe I am well I will be! Is it my fault that I am sick?” “By focusing so much on mind/body work they are playing right into the hands of the insurance companies and medical people who are trying to call us all psychologically sick. Imagine being told at the Centre that if I could get a job that I really liked I’d become well. I loved my job! I got sick from the building!” “I usually bring a friend into doctors offices to help me ask questions and remember the doctor’s advice. He refused my right to have another person present for my appointment. He said that he would not see me unless I went into his office alone. That’s the day he stopped my I.V. therapy, and told me ‘There is nothing for your here.’ I haven’t been back since.” “People like me who don’t fit what they are researching are told ‘There is nothing we can offer you’. Five years on the waiting list to be told that.” “People on the waiting list need to know they are waiting to be research subjects, not real patients.” “Now I am getting real help outside the Province. The patients here don’t even know how a real clinic works. It is very sad.” “You patients were lied to for political reasons. It has always had a research Mandate. All this ‘unproven and dangerous’ treatment stuff is_____’s distorted thinking. _____ is very careful not to overtly lie, but half truths are still lies. What’s been done has destroyed trust. A lot of people are paranoid for good reason.” “They speak to us as if our little brains can’t comprehend the complexities of scientific research and medicine. Many of us were scientists in our work for pete’s sake. As soon as we became sick did we suddenly become brain dead? I’m sick of being talked down to just because I’m a patient.” “It’s such a fraud. All this talk about eliminating stress and creating warmth, but people are afraid and confused. This is the place where we are supposed to be validated, and instead people are told to deny their symptoms.” “Three times I asked for treatment. Three times he said he had nothing. I asked for antigen treatment and he said he isn’t offering it because he doesn’t believe it works.” “My friends have taught me how to avoid things that I react to, but no one at the Centre has told me about avoidance. I have been told they can’t treat me because I have emotional issues to deal with! Would cancer patients be denied treatment on those grounds?” “He wants me to start another mind/body course. He took me off IVs. I’m not doing well. I’m losing weight again, and I’m really sick. He won’t listen to me.” “Dr. McSween said on MITV yesterday that ‘some allergy tests cause reactions from the pin pricks, but our tests don’t do that’. The Centre’s research is being used against us already.” “We sent an emergency fax to (the doctor) because she was failing so fast since he took away her IVs. It has been ten months now and we haven’t heard a thing from him. Luckily an outside doctor recognized the emergency and treated her. She is doing very well again, but she could have died. I wonder if he even knows if she is still alive or not.” “He told me to go back to work! He doesn’t see how sick I am.” “I wasn’t pleased about the letter he sent to (an insurance company). He said I would definitely eventually return to work. They denied my claim. There is a point where positive thinking is harmful. What am I supposed to live on until I get to the point where I can return to work?” “My first time in, the testing nurse injected me with something but wouldn’t tell me what. I didn’t agree to be a research subject! I thought I was here for treatment! I don’t want to be injected with unknown things without giving permission.” “I’ve been there for ____ years and I’m no better. I’m worse. I can’t live like this any more.” “If I were still getting IVs my marriage wouldn’t be breaking up. It is as clear as that.” These are only examples. Some are much worse, but could not be included here because of patient confidentiality. None are insignificant, and some describe desperation including serious suicidal thoughts. They all involve unnecessary and untold suffering. Members of the Allergy and Environmental Health Association of Nova Scotia’s Environmental Health Treatment Committee have been hearing concerns like these for up to 4 years. The committee itself was formally established in September of ’97, because patients were asking members of the Association to help them. What is the Treatment
Committee?
As for the long term IV therapy, the Committee has sought and found NO sound evidence that supports the allegations about developing osteoporosis, of becoming dependent, or that no place outside of NS gives long term IVs, etc. There is much evidence that long term IVs are very beneficial for certain kinds of environmentally ill patients, and they are used successfully in other clinics in Canada and the world. Recent History:
Over the first two years of the full time ‘clinic’, experienced patients had helped as best they could, instructed patients who called for help to contact the Patient Advisory Committee, and asked the callers to be patient while the new clinic was in its set up period. These patients were told by the staff and Director, and passed on the message to the others, not to worry, when we are in the new clinic “you’ll get your treatments.” By the time the new building was ready for occupancy (Spring of ’97), most of what had been good about the part-time clinic had been dismantled. The patient volunteers were gone, patient educators dismissed, the long-term IV program had been discontinued with a flurry of unfounded excuses. Treatments such as oral supplementation, rotation and avoidance diets, community sauna programs, full antigen therapy, and much more, were largely or completely gone. Information sessions for Waiting-List Patients were no longer done, the two highly skilled part time doctors were dismissed for ‘budgetary reasons’. (Dr. Fox had agreed to the lobby effort to get them back, but surprised everyone when his turn cam to be interviewed on CBC’s Information Morning. He denied the need for more money! He later admitted in the press that even if he had the money he likely wouldn’t hire them back. These two doctors were skilled in practicing Environmental Medicine, having been sent by the Province to Dallas for training, and had years of experience. They would not agree to withholding treatments from their patients or cease Standard Practice of Environmental Medicine. Although the lobby effort was successful at obtaining $225,000.00, the doctors were not hired back. Instead, a few months later the Director’s son, who was recently graduated from medical school, joined the staff full-time.) The AEHA, which had worked for 10 to 15 years to get this clinic for Nova Scotians was no longer welcome to play a vital role in assisting with the new clinic and its patients. Patients reported everything had become secretive. Patients had once been part of their healing teams; they had been encouraged to read, share, and learn all they could about the illness. Their charts had been open to them, and their views on their own needs were understood and included where appropriate. The word ‘clinic’ had been dropped from the new clinic’s name, and it became the Nova Scotia Environmental Health Centre. Where the earlier clinic was usually filled to capacity during open hours, the new building often echoes with emptiness. By September of ’97 many were giving up hope that patients’ concerns would be handled through either the CARES committee or other appropriate channels within the NSEHC. Letters, meetings, committee presentations, and personal pleas over a three year period had resulted in little more than empty promises. People attempting to point out the needs of patients reported being accused of being trouble makers, or even “angry Ross-camp” dissidents. These accusations were, and are, completely untrue. Patients were suffering and in desperate need of help, and the ‘clinic’ that had been provided was somehow occupied with projects other than patient care. It was learned much later to be much more complicated than that. Knowledge of this Committee’s existence passed mostly by word of mouth. By December we had received over 70 formal complaints, including over 25 letters which had been sent to the Minister of Health. After the Centre’s administration decided to keep the Six-Month Review results secret, the Committee felt that at that point we had a responsibility to make public the fact that the mandate of our new ‘clinic’ was one of research, not treatment. The new patients (and their referring doctors) deserved to know that the new clinic was not providing the same kind of help that had been provided in the earlier clinic. The new clinic, or Centre, had undergone a quiet metamorphosis into a research-mandated centre bearing little resemblance to the previous part time clinic which had helped so many - and whose success had won us the full-time clinic. When the Treatment Committee decided to try to achieve positive change by doing political and media work, we were surprised to find the Department of Health knew little or nothing about the goings-on at the Centre. The Department of Health was surprised that the extra money given in the Spring had not resulted in the rehiring of the two doctors as intended. Everyone, including the Minister of Health, expressed the belief that the Centre was a treatment facility, and it took ‘some doing’ to locate a copy of the contract. Highlights of the Committee’s
action so far on behalf of patients:
**Coordinated letter writing campaign from concerned patients to the Minister of Health alerting him to the problems and requesting official intervention. **Worked with NS Coalition on Environmental Sensitivity to minimize the negative effects of the Langley Report. **Did media work to reveal to citizens, doctors, government officials, etc., that the actual current mandate of the NSEHC is one of research, not treatment as had continually been claimed, and to show the extent of the concerns and the actual harm patients were describing. **Conducted presentations, meetings, and more, with the Department of Health and the political parties. **Worked to make EH patient care an election issue. **Attended “Partnering” meetings at the NSEHC with patients and the Centre’s administration. The goal of the Allergy and Environmental Health Association’s Treatment Committee has been to obtain more treatment choices, including re-inclusion of standard treatments, and good quality treatments, for more patients. We want to see patient concerns addressed as well as possible and in a reasonable time frame. The goal has also been to restore truth to the situation. A Brief Past History:
Dr. Roy Fox was hired as medical director, and although patients were sad to lose Dr. Ross, who had brought them this far, they were still grateful for the expected clinic, and they threw their support behind Dr. Fox. The period of planning and building the facility required patience from us, and we were prepared to give that and more. In the beginning the experienced patients continued to offer their services because they still believed the intention was to help patients, and that it was the set-up effort that was straining things. The experienced patients tried to fill the gaps in service to the many sick people who would call them for help with problems as straight-forward as “No one will return my phone call and I need help”, to life-threatening situations. However, awareness was growing that all was not right. As outlined above, the new Medical Director and the Dalhousie Medical School Administration were changing much that had contributed to the extraordinary success of the part-time clinic. In May and June of ’96 it was so obvious to many that the ‘Clinic” was heading for trouble - sick people were in trouble, and getting little or no help. It became more and more evident that helping sick people was no longer the mandate. New patients who apparently fit the new mandate reported being warmly treated, while at the same time those who objected to losing the treatments which had previously helped them, and those who did not fit the mandate, reported being seen once and never again, or told “We have nothing to offer you here”, or being offered a mind/body course instead of treatment. Treatments were being slowed or discontinued. The Mandate of the NSEHC
is Research:
Some Treatment/Research
concerns:
Patients seeking help for chemically
induced bruising, osteoporosis, and hypersensitivity to inhalants report
being offered mind/body work as opposed to Medical Treatments. Useful
mind/body techniques that further healing have been available throughout
history. Well-qualified practitioners are available throughout our
Province. Could the NSEHC better assist patients to access these
community resources, and thereby free up dollars for Environmental Medicine
Treatments?
The Six-Month Review:
“Partnering”
The AEHA heard in the partnering meetings that the administration wants a strong patient voice, however, in practice the patient voice has been repeatedly muffled. After the many meetings and letters, etc., (such as with and from the Ad Hoc committee and the CARES committee), none of what the Treatment Committee was saying could possibly have been new information to the administration. They had apparently chosen to not listen or act. If the administration is truly concerned about the expressed needs of patients, why did they wait until the recent publicity and public pressure before putting effort into appearing to do something? Why was the volunteer team disbanded when it could easily have helped fill in the gaps in patient service? Why were patients, or even Treatment Committee members who had made a presentation, not allowed copies of the 6-Month Review? If patient care was important, why was the research contract agreed to, and why did NSEHC and Dalhousie Medical School Administration go on to deceive the patients about the true mandate? It was stated in the partnering meetings that “there are increasing demands and the NSEHC can not respond”. These are not “increasing demands”, but are long-known issues that have not been taken seriously. Because of the NSEHC research mandate, there has been no real responsibility to meet them. Because of the deceit of over 3 years during which time people were assured it was a treatment facility and they would be taken care of as soon as the new building was ready, the suffering has been magnified many times over. It was also stated in partnering meetings that if the planned Task Force is established to work on a provincial strategy for environmental health issues, that it must be “consistent with and complimentary to” the direction of the NSEHC. The patient participants in the partnering process had intended the Task Force to be independent from the Centre, but already the Centre appears to be indicating an intention to control the Task Force too. What then are the chances of broadening the treatment options in the Province to again include those treatments that have been set aside by the NSEHC? What are the chances of real patient input, especially if that input is not consistent with NSEHC policies? Patients with Environmentally Induced Illnesses are suffering not from just illness, but from the personal and political agendas of those who should be helping environmentally ill people: 1. Dr. Roy Fox, Medical Director
of the NSEHC
How often patients have heard that “budgetary constraints” are the cause of this or that decision, only to later hear more excuses that reveal the decisions were based on opinions or philosophy, or on the research mandate. Trust has been slowly eroded, and many patients report being frightened of the power the Medical Director holds over their pensions, insurance, their health, and their lives. 2. The Dalhousie Medical School,
and Dr. John Ruedy, Dean of Medicine
Is it acceptable to deny Nova Scotian patients the best available treatments to date just because the “definitive” answers are not yet found? Definitive treatments have not yet been found for cancer, and some of the treatments do have serious side effects, yet cancer patients are given the best treatments possible. 3. Provincial Politics and Medical
“doubters”
(a) Dr. Dan Reid, Medical Advisor
to the Minister of Health, has no training or experience in Environmental
Medicine, and does not appear to accept the medical causes of Environmental
Illness. Dr. Reid has said his department is prepared to wait three
to five years for “definitive” research to come out of the Centre, and
that they “haven’t seen any yet”.
The irony is that none of these persons could ever be accused of wanting to cause harm to sick people. They likely don’t realize what their actions and choices are doing to sick people. Some are fooling themselves - they can’t afford to allow themselves to see what is happening because it conflicts with their own agendas. For others it is from ignorance of the illness of its effects on people’s live. Some don’t recognize that these people are physically sick, so they see no harm in denying physical treatments or denying the right to compensation. Whether the act is deliberate or not, the END RESULT is that many sick Nova Scotians are caught in a web of personal and political agendas, and they are being hurt. This must stop. Divisiveness within the
Patient Community:
Some patients believe that more money and better communication will solve the problems. How can more money solve basic philosophical differences? How can more money change the research mandate? The complexities and the long history of the situation, the meetings, broken promises, completely different philosophy, the research demands from the Langley Committee supporters and others, and the seriousness of patient concerns, some life threatening, and more, all lead to the conclusion that poor communication and lack of money are oversimplified as solutions. The Treatment Committee
and Political Efforts:
To review the three main concerns:
(2) There has been a shift from
the more standard treatments of Environmental Medicine toward mind/body
work. The irony is that the standard treatments were the basis of
the success of the part-time clinic and their merits helped win the full
time clinic.
(3) Many patients report having
significant concerns about their treatment at the Centre:
One danger is that because the general medical community knows so little about Environmental Medicine (EM) they don’t even know of the NSEHC’s shift away from EM. This and poor research could discredit and damage the advancement of EM in Nova Scotia and all of Canada. This would be tragic. Is there hope? Yes. New Brunswick has a successful new clinic now and some Nova Scotians have been able to go there. There are others in other parts of Canada, the US and Europe. The NDP and PCs have not forgotten the promise to provide a treatment clinic. In the Spring Sitting of the Legislature the Progressive Conservatives submitted a motion for an external inquiry by international experts. It was passed unanimously. There are experts out there with 30 or more years of professional experience in EM who could do such a review. At the date of writing, there is no sign of the review yet, but it could be the solution that clears the air and corrects the problems. To be effective, it would have to have more power than the 6-Month Internal Review. There are clinics scattered all over the world treating Environmental Illness and doing research. (The first international conference on the Child and Environmental Illness is happening in Amsterdam this summer.) Ours was to be the first government funded Environmental Health clinic in the world, but somehow the sick people themselves, the “raison d’etre”, have been left out of the formula. As important as research is, Nova Scotians still need treatment, education, and prevention of Environmental Illness, using standard practice as well as new treatments as they come along. Now that we have uncovered the truth that the NSEHC is a research facility, and it is also very clear that there is little genuine desire for significant patient input, we have a choice: Either we continue to try to have the Department of Health return to its original promise - rewrite the contract to provide a clinic with treatment, education/prevention, and research, or, we begin again to seek an alternate clinic or treatment “option” to provide the needed care. The task which began, for some back in the late ‘70’s, must begin again. Please write to the Minister of Health and your MLA telling them how much we need the treatment, education/prevention and research facility that had been originally promised. It is only with your support that this will become a reality. A note to satisfied patients:
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