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Carly Lambert-Crawford
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Carly Lambert-Crawford
2014-03-05 15:31
Thank you for having me here today.
I am a psychotherapist treating anxiety, depression, and eating disorders in Burlington, Ontario. I am also a proud member of the steering committee of the National Initiative for Eating Disorders.
I am here representing the voice of my clients along with my own voice as a survivor of anorexia. I'm proud to say that I'm one of the people that were able to get through our system despite its flaws.
As a therapist I often see people who the system didn't work for, the people who are waiting. I treat the most desperate of individuals and the sickest of the sick. They are lonely and desperate. I have only been a therapist for five years, and in my early career I have seen one of my clients die from anorexia. That is one client too many. She was bounced around, kicked out, and misunderstood. She struggled with OCD in addition to her eating disorder, and this left her paralyzed with fear. She was 20 years old when she died.
I have since known three more women who I was in treatment with who have all died from complications of their eating disorder. They were all under the age of 30 and were part of our system of care.
I can tell you right now that the statistics on eating disorders are downplaying this issue a thousand times over and millions are suffering in silence.
Prior to my work as a private practitioner, I worked as the program director at Danielle's Place, an eating disorder and support resource centre in Burlington, similar to Sheena's Place. Throughout my three years directing the centre, we had a terrible time getting funding to keep our doors open. Our aim was to provide services that were free of charge and would be free of waiting lists and were able to support the hundreds of men and women each year. Unfortunately, when I left the centre, they had to close their doors. This was devastating for a number of clients who saw the centre as their regular safe haven.
The inability to recognize the severity of the illness is one of the diagnostic criteria for anorexia nervosa, and this was me. I was one of the ones who had no idea that this was happening to me. Before I was diagnosed with anorexia, I was diagnosed with severe depression and anxiety. I suffered so badly that I really and truly did not know how to live without being on a myriad of different drugs to calm me down.
My eating disorder probably started when I was 16 years old. It was at this time that my family had gone through an extremely traumatic event, which is very typical for the onset of mental illness. Anorexia was one of the greatest gifts because it numbed my brain and it really helped slow these thoughts down.
Things went downhill pretty quickly, as they do, and all of a sudden things were getting harder for me to do. My doctor told me that I was underweight because I was a competitive athlete. He put me on a myriad of antidepressants that left me feeling a confused mess. I never weighed myself. This also surprises people. When I first weighed myself, it was the first thing that scared me enough to go to a specialist for assessment.
The next couple of years of my life are the hardest for me to talk about. These were the years that I was battling the system and myself. I had no idea what was happening to me. My world was falling apart. I was defeated. After years of loving the anorexia I let it take me.
From here I have a hard time remembering why, but I ended up on a psych ward in another city. I was the only anorexic patient within their whole entire program. My illness took over at this point and I was asked to leave that program. I was hospitalized in the ICU at my local hospital. I have had many doctors tell me they don't know how I survived.
I'm telling you this not to make you feel sorry for me, but for you to understand that my story is not unique. This happened all while I was waiting for an assessment with a local treatment centre. This happened while my parents were begging for someone to talk to me and for someone to understand. This all happened because I was kicked out of the psych ward because they did not know how to help me and my weight kept dropping. They asked me to leave their program at ... pounds at 20 years of age. [Pursuant to a motion passed on April 30, 2014, a portion of this testimony has been deleted. See Minutes of Proceedings] They discharged me from hospital at that weight because they told me I was being non-compliant.
From that moment on, I had no will to live or fight. My weight went down significantly and I ended up in the ICU surrounded by individuals who were three, four, or five times my age and dying of heart failure, cancer and other terminal illnesses.
My name happened to come up for an assessment at the Toronto General eating disorders program after waiting for four months for the assessment. They would not let me do the assessment over the phone and did not have the resources to send their specialist to me while I was in the hospital so I had to go by ambulance from Burlington to Toronto, hooked up to IVs, a tube that was feeding me and a heart monitor making sure I didn't go into cardiac arrest, just to prove that I was sick enough for their program. I actually remember lying there in bed completely out of it while a team of doctors asked me questions.
Does this seem right?
There is something wrong with our system. Would they make a child who was sick with cancer travel that long distance to prove they needed radiation or chemotherapy or to prove they needed to see an oncologist? From here I was put on a waiting list. I waited for four more months in a hospital where I endured the most disgusting abuse from the staff, which gave me the courage and the passion to do what I do today.
I don't want anyone to have to be told that there are a lot of other people there who are sicker than them and to just eat and stop taking up a bed, or to be told that they are too sick to talk to anyone and to not be given a voice to even try to understand.
I was eventually able to get a bed at the Toronto General eating disorders program. I spent four months there and left prematurely. I relapsed immediately, and from there I was facing outpatient treatments and very expensive individual therapy.
I worked tirelessly with my family and my husband to get where I am today. Many things that happened in my life were very influential in my recovery. Those seven years were the hardest of my life as I battled that system, but I truly believe my eating disorder has made me a better person. However, I will never ever underestimate the power this has on any individual that is diagnosed.
What I am here to get across today is that eating disorders are truly deadly illnesses. They take your life away and destroy families. As is the case with many other mental illnesses, people just do not understand. They feel an eating disorder is something you can just fix, something you need to address and get over. What we know now is that this is an illness of the brain, a psychological illness that takes away all logic and reasoning. I cannot believe how lucky I am to be sitting here right now, and how close my life came to ending. I have a very hard time making sense of it. I have a hard time making sense of it because there is no sense to make.
People die from this illness because there aren't adequate resources to treat it. Doctors misdiagnose and minimize the struggles, and people end up feeling enabled and blamed for something they do not understand. The prognosis for eating disorders is not very good. We know that it is hard to recover, and the longer the eating disorder goes on, the lower the chances for a full recovery.
We need help to make sure that when people are ready, there is treatment available. We need to put eating disorders on the radar and help people correct their misinterpretations of this illness and erase the stigma.
There are three aspects that I feel are most important to focus on at this time.
First is funding. As others who have spoken at this forum have said, I believe there needs to be equitable funding for eating disorders and other related illnesses. There need to be more beds and spots available so that waiting lists are shortened.
Second, I believe there needs to be an equitable amount of OHIP coverage for youth and adults who are struggling with eating disorders. OHIP is quite easily convinced to send anyone under the age of 18 to programs in the United States for specialized and timely care; however, anyone older is told to make use of our resources here.
Third, I believe there needs to be mandatory training for medical professionals to be able to properly screen and diagnose eating disorders. There needs to be more awareness and consistency among general practitioners, nurses, psychiatrists, and other professionals to ensure that this illness doesn't continue to be swept aside.
At this time, I am happy to answer any questions to help you understand my perspective and to offer any insight I may be able to bring to the study.
Thank you.
Arthur Boese
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Arthur Boese
2014-02-26 15:35
Thank you for allowing me to put on this presentation. I have two daughters who suffered from eating disorders. When I realized the severity of this disorder, I felt that I had to get involved to help these patients get good care in a timely fashion.
With that in mind, I approached Dr. Paul Garfinkel of CAMH, who was one of the leading authorities in eating disorders in North America back in the early 1980s. Dr. Garfinkel was the president and CEO for the Centre of Addiction and Mental Health. After several meetings he expressed an interest in possibly partnering with my company, Avalon Centers Inc. However, he found that he could do nothing until there was a change in the OHIP policy. With that in mind, I decided to open a pioneering facility, Avalon Centers Inc. Eating Disorder Treatment Center, in the U.S. in hopes of bringing that experience to Canada to help our patients here when the time was right. This was a multidisciplinary approach to the treatment of eating disorders. We had a not-for-profit company called Avalon R and D and a for-profit one called Avalon Centers Inc.
To build a cutting-edge partial hospitalization program, our well-educated clinical team of psychiatrists, psychologists, social workers, nurse practitioners, nurses, and art and yoga therapists needed to build the most up-to-date protocol available. In order to formulate this, we extracted the necessary information from Dr. Garfinkel's vast research. Because of all of the clinicians involved, it was a very expensive process.
After this protocol was completed, I contacted Homewood in Guelph and talked to Dr. Eduardo Perez and April Gates. Over the next few months we had many friendly and informative meetings. When they issued a contract to partner with Avalon, we gave them our confidential protocol. After keeping it for at least four months, they then decided not to go ahead.
We attended many eating disorder meetings and were a member of the Eating Disorders Association of Canada, whose president was Dr. Robbie Campbell. At one such function in Toronto, Dr. Blake Woodside told us that there were probably 100,000 eating disorder patients in Ontario and that 18% of them died. The main treatment available was Homewood in Guelph, which at times had as much as a two-year waiting list.
OHIP did agree to send us patients now and then, depending on who was in charge, but if someone, like MPP Peter Kormos for instance, called, they pushed the patient through the system.
Bellwood, in Toronto, was also very supportive and did occasionally send us a patient.
Once in the U.S. we required a state licence from the Office of Mental Health. We are proud to say we were the first to get a licence as a free-standing facility. This was four and a half years before anyone got a licence in the state of New York. It was quite a feat for us. We established ourselves in three buildings, serving partial hospitalization, outpatient, and a two-shift fully supervised group home, with approximately 30 employees in total in under 4,000 square feet of space. We treated anorexia nervosa, bulimia nervosa, and some obese patients.
In time we worked with Kevin Flynn, who obtained a budget to get OHIP to do an audit on our largest treatment centres in the U.S., ourselves included at the Avalon Centers Inc. Buffalo location. Their audit showed we were as good as the finest centres and better than most in the U.S. and only two hours away from Toronto, but still OHIP was unable to provide us with patients.
We had many meetings with 20 senators and assemblymen to obtain their support in the U.S. I worked closely with Senator Joseph Bruno, majority leader, and Senator George Maziarz of Lockport. They promised us a new 20,000-square-foot centre ready to proceed. We even had fully comprehensive drawings and land picked out. Unfortunately, funds became scarce because of the economic downturn in the U.S.
Since this is a mental disease, and wanting to help patients with their insurance coverage, we went to Washington to help obtain mental health parity with the HMOs. In Washington I ran into a colleague, Kitty Weston, from Minnesota. I told her that I had contacted Senator Hillary Clinton’s office and that she was going to come out to Avalon. But then 9/11 occurred. As it happened, Hillary Clinton was in Washington. My wife and I were fortunate enough to obtain a meeting with her, and she gave us her full support.
We also had an agreement with Dr. Thomas Rosenthal, professor, and chair of the department of family medicine, Buffalo, New York, that all graduating doctors in western New York would be trained by our clinicians in eating disorders, because this is not part of their training.
Through my dedication and personal finances only, we are happy to say we were able to save approximately 1,000 lives in the 11 years that our multidisciplinary partial hospitalization treatment program lasted. Our experience there has shown that the young patients are more receptive to a free-standing facility rather than hospital settings.
Because of my experience, I would be pleased to assist in the process of setting up similar facilities in Canada.
This is respectfully submitted.
Susan Dodd
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Susan Dodd
2013-12-09 15:57
Thank you.
I am actually a professor in the foundation year program at the University of King's College, in Halifax. My field of study is social and political philosophy.
I am the author of a book on the aftermath of the Ocean Ranger disaster. At the moment, I'm collaborating with Dr. Mélanie Frappier, from the history of science and technology program at King's, on a textbook for Oxford University Press. That book is called Engineering in Canada: Results, Risks, and Responsibilities. We're using Canadian case studies to provide engineering students with an introduction to their professional code of ethics.
My work on occupational health and safety developed by accident, quite literally. My oldest brother, Jim, was one of the 84 men who died on the Ocean Ranger. It still gets to me, it's amazing.
Anyway, as you know, in the wake of that disaster, the Government of Canada and the Province of Newfoundland conducted a long inquiry, first, into the causes of the loss, and second, into the appropriate regulatory organization for the Canada-Newfoundland offshore.
In those days, one of the biggest problems was turf wars between Ottawa and St. John's. Chief Justice Hickman's decision to house the permit-granting function with the occupational health and safety regulatory function was deliberate. When I interviewed him for the book on the Ocean Ranger, he was really clear that he thought those groups should be under the same organization in order to prevent what he saw as one of the main political causes of the Ocean Ranger disaster, and that was fragmentation among bureaucracies, among the power holders.
More importantly, and I often need to reiterate this point, the cause of the Ocean Ranger disaster was not the weather. It was a lack of political will to regulate in 1982.
Both Newfoundland and Canada wrongly assumed that the oil companies would self-regulate, that they would comply with the rules that covered them when they operated in American jurisdictions, and those companies did not.
The lesson of the Ocean Ranger disaster is that the kind of regulatory regime in place is less important than the government's expression of political will. If there is no will to enforce regulations, then we risk setting up our people and our environment for deadly exploitation. This is definitely what we learned at Westray, as well, because if the existing legislation had been enforced at Westray, that explosion and those deaths would not have happened.
Within companies, the first priority, the raison d'être of the organization, is to maximize pay for shareholders. This is not hostility or antipathy; it's a matter of priorities. Government's job is to ensure that the collective goods of the electorate are enhanced by, not just protected from, corporate activity. The regulatory needs of the offshore in Canada changed with time, obviously.
In 1982, one of the most pressing problems was a combination of thoughtlessness about occupational health and safety, a combative relationship between federal and provincial authorities, and a deadly naïveté about the professionalism of rig operators.
The New Orleans-based operator of the Ocean Ranger, Ocean Drilling and Exploration Company, was one of the most experienced rig operators in the world in 1982. Even the most cursory glance at Chief Justice Hickman's report will show you that ODECO was negligent by any common-sense use of that term.
ODECO's deadly mismanagement of the Ocean Ranger was possible only because the Province of Newfoundland and the Government of Canada were preoccupied with fighting over anticipated revenues, and they were naively confident that the so-called experts in the industry would perform professionally.
This dynamic will certainly repeat itself if government is once again complacent about its regulatory responsibility. It is worth remembering that although ODECO no longer exists, it and its fleet were purchased by Diamond Offshore Drilling, which still uses the name “Ocean” in the names of their vessels.
The well owner was Mobil Oil, so I'm glad to see how clearly Bill C-5 points to the responsibility of the owners to ensure that the rig operator behaves professionally in relation to safety.
Today, one of the central problems that this bill seems to address is clarity around functions and the need to keep regulations up to date in the changing industry.
I have given a lot of thought to what I could add to your discussion that...[Technical difficulty—Editor]
First, the regulatory structure will be exactly as effective as the political will that supports it. Where there is no political will, that is, where it is assumed that corporations are best left to their own expert judgment, there can be no effective regulation. That is where disaster begins.
The fact that this bill does not implement recommendation 29 from the Wells commission seems to me to be potentially a red herring. If the political will to regulate is communicated, safety will be respected. A stand-alone safety division would be effective only if it had resources and a commitment from government to prosecute when appropriate. Simply creating the office will not do the trick. It would require an investment.
Second, failure to regulate leads not only to loss of life and destruction of the environment, but also to the public's losing confidence in the legitimacy of government. This happened to an extent after the Ocean Ranger loss, certainly after the Westray disaster, in the States after the Deepwater Horizon disaster and the oil spill, and we're seeing the same kind of dynamic after the Lac-Mégantic disaster. These events are also political disasters.
Third, I would like to see a fines system that earmarks revenues for research and development. When I interviewed John Crosbie for the book, he said, “We still don't know how to get those men off those rigs.” That was a sort of typically gendered statement, but anyway....
Industry does not have an internal motivation to study evacuation systems. Government needs to take that on, and in this case I would say in partnership with Memorial and Dalhousie engineering schools. We can't leave research and development simply to industry. They have different priorities than the good of the public. We need independent researchers working on evacuation and rescue technologies.
Fourth, the advisory council might, in cooperation with governments, business, and universities, convene a conference on regulation every three years. Having a regularized conference would help Canada keep up with changing industry and international standards. We could invite regulation experts from Europe as well as from the U.S.A. We might use Hickman's conference that he conducted after the Ocean Ranger as a model for that.
I would love to see governments consider local, by which I mean provincial, hiring and training requirements. The training would have to go with it, right? Otherwise things like the Ocean Ranger disaster happen.
My sixth and final point is a question. It goes back, I think, to the spirit of the recommendation on the Wells commission around the independence of safety regulators. The question is this: Does Bill C-5's clarification of the roles of the various officers entail an increase in the number of government officers responsible for regulating work on the rigs? It seems to me that investment in regulatory personnel would be a real expression of political will to regulate safety in the offshore.
Thank you.
Robert Wells
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Hon. Robert Wells
2013-12-04 15:44
Thank you, Mr. Chairman, and members, for inviting me to be here in front of the committee to talk about offshore matters generally.
I've had an opportunity in the last three or four days to examine the bill. The bill is a complex piece of legislation. Somebody has worked hard—more than one person, I suspect—on this bill. I know that it's been under consideration for a number of years. Quite honestly, I think it's a good job and I think it will help to formalize some of the concepts that people knowledgeable about the industry and the regulatory people have thought about for some time. To see it enshrined—I hope to see it enshrined—in legislation is a good thing.
A couple of things impressed me most. One is that the bill talks about and mandates the involvement of workers in the processes of safety. That was something that was important to me during the two years and three or four months that I was the inquiry commissioner. In my report, the theme that workers must be involved emerges constantly. Now, I was concerned with helicopters, not safety on the offshore installations, but in both cases workers must be involved, and the fact that there's legislation going to involve them formally, I think, is a very, very good thing.
Another thing impressed me. I have great confidence in the wisdom of non-experts. We need experts in this complex age very much, but experts should be advisers. There's no better illustration probably than Parliament itself, which has expert advice on many things, but in the end decisions are made by governments and parliaments that are not necessarily expert in particular fields.
The idea of advisory committees, to me, is a very welcome thing to see in this. My own report recommends that advisory committees be established to have expert advice but nonetheless to guide the experts, if you like, or guide the decision makers, more importantly, in the important decisions that they have to take. Maybe I get this from years of dealing with juries as a counsel and as a judge, but I have the greatest respect for the wisdom that ordinary men and women have that comes forth when they're asked to consider things. These two things I mention.
Of course, the other thing this act does is to bring the offshore into the fold of occupational health and safety generally, because the offshore has been off on its own in the past. This brings them into the broader context of occupational health and safety. That's important in another way also, in that it helps in the development of a safety culture or safety cultures. Safety cultures are one of the most important things. They're hard to define. Some of the writers on safety have described them simply as the way we do things around here—but that's an extremely important component of safety. I think the offshore involvement with other safety cultures will both strengthen other safety cultures and allow them in the offshore to be strengthened by that involvement. That's extremely important, I think, in the safety field.
I won't say more about this in the short time in which I'm making general remarks, but I want to pay tribute to the people in the Canada-Newfoundland and Labrador Offshore Petroleum Board for the progress that has been made in the last four and a half years since the tragic accident in March 2009.
Perhaps the most important in my mind has been the raising of the search and rescue capability provided by the operators to the world-class standard, because at the time of the accident it wasn't at the world-class standard. There was no dedicated helicopter. The regular transport helicopter had to be refitted, seats taken out, and hoists put in to become a search and rescue helicopter. On the day of the accident, that took about 50 minutes, so the search and rescue helicopter didn't get in the air for about 50 to 55 minutes. That's a long time in search and rescue when people are in the North Atlantic, either as a result of a crash or a ditching.
At any rate, that was so important to me as I began to learn in the inquiry process that, as you probably know, I made an interim recommendation that a start on that process should be made immediately. The C-NLOPB responded and the oil operators responded and last spring.... It took a lot longer than I thought, taking about a year. You can't buy one of these helicopters as you can buy a car, for example. Then you need other things. You need an important hangar with all the facilities. You need facilities from bedrooms to cooking facilities to whatever in the hangar because you're going to have people there 24/7 when they're on duty. Then one needs permission to build a new hangar.
All this was expensive, but the oil operators came through and last spring was a very significant day, and for me personally, too, when I went to the opening of that facility, because that marked a transition. It brought the Canada-Newfoundland and Labrador Offshore Petroleum Board to a world-class standard with a 20-minute response time. I think that was a marvellous thing and I congratulate C-NLOPB, the oil operators, and the industry generally for making that happen.
Other things have also happened in the last three or four years. There has been greater worker involvement in committees, particularly in safety forums, which are ongoing. I've been to two of them. I went to one two or three weeks ago. I was invited to go and the discussion was very fruitful and important and worker involvement was there. I'm glad to see in Bill C-5 that workers and their unions and representatives of safety committees are involved. These are good things.
Survival suits, as Mr. Barnes has said, have been improved substantially, and that is a good thing. The other important thing that has been done is that the C-NLOPB has now got top-notch aviation expertise in-house, and also outside the house that it can call on. That is of fundamental importance because up to then, the C-NLOPB had no expertise in aviation. It relied on the operators. It relied on Transport Canada, and that's fine as far as it goes, but in a dangerous offshore environment, which we have in the North Atlantic, you need expert advice and knowledge right at the scene of aviation of what's possible and what should be and on what C-NLOPB, as an institution, has to watch for and be on top of.
These are good things that have happened. There are many more just in the training.
When I took the training it was in a pool with a temperature of probably 20 degrees or something like that, and it was calm. That didn't make it much easier to go into the dunker, which is an experience for anyone. But now, after ExxonMobil—if I'm correct—provided $3.8 million to bring the training facility up, I visited it after the work was done and it was quite something, with simulated thunder and lightning, waves, storms of rain and wind. It was as realistic as anything could be. If I had been invited on that day to take the training, I might not have done it.
We have made a lot of progress, and this is probably the first time in a formal setting such as this that I, as the former commissioner, have been able to pay tribute to what has been done.
Now, I doubt if you will be asking me all that many questions on the bill itself. If you do, I'll do my best to answer them, if you give me the reference and what to look at, but something that took 10 years to prepare can hardly be digested in three, four, or five days. Anyway, that's that.
I suspect you have other questions for me in other areas, which I'll do my best to address. But thank you very much for this opportunity to make an opening statement.
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