Carly Lamont
A thirteen-year-old girl with epilepsy, cerebral palsy, and a spinal deformity known as scoliosis, is embroiled in a dispute between two orthopedic surgeons and the wishes of her parents that has resulted in a delay in surgery that could correct her posture.
The girl, Carly Lamont, is one of 150 B.C. children that was put on a waiting list for what is deemed “non-emergency” surgery in February of 2008. At that time her parents, Susan Watson and David Lamont, were shocked to find out that the waiting list could be as long as 18 months. This August marked the passing of the 18th month that Carly would have been on the list. But her surgery was never performed, and her name was removed from the waiting list, stemming from a disagreement among the orthopedic surgeons and the parents.
Scoliosis, from the Greek word meaning “crooked”, is a medical condition in which the patient’s spine is curved like an “s”, and can be very painful. It is usually classified as congenital [vertebral anomalies present at birth], or as a neuromuscular symptom of a secondary condition such as cerebral palsy, which is what Carly has.
There are only two doctors in British Columbia qualified to do such an operation on children, while there are only four in neighbouring Alberta. One of the doctors, Dr.Firoz Miyanji, met with Carly Lamont and her parents back in October of 2007. Before that they had been seeking treatment in Portland, Oregon, for her condition, but were not satisfied with the results. Hopeful to find a better solution, they contacted the BC Children’s Hospital Spine clinic for more options.
After meeting with Dr.Miyanji, the parents agreed that it would be prudent to go ahead with the surgery, and they were accepted under the condition that they would meet with the doctors recommendations. Since the surgery would provide a great improvement in the quality of life for their daughter, the parents agreed.
But shortly after joining the list, they were told of an 18 month wait time. The parents were horrified. Nobody had indicated there was any wait time for the surgery in previous consultations. Although her doctor agreed that the list was long, the hospital officially reported that Carly’s spine curvature appeared to be stable, and that if her doctors felt her organs or her life were in danger, they would expedite the surgery.
That wasn’t good enough for Carly’s mother. She began a petition online, wrote protest letters to the Prime Minister and the Premier, health ministers and hospitals, and spoke to the media. Ms.Watson felt very strongly that children shouldn’t be asked to wait a year and a half for necessary surgery.
“I was looking out for the interests of my daughter, first and foremost,” says Susan Watson. “I was afraid that her condition would worsen while we waited.”
Premier Gordon Campbell made mention that “if wait times for a specific surgery or procedure become unreasonable, B.C.’s health system would need to shift resources to meet patients’ needs.” But nothing specific was done to help Carly. And while others have expressed sympathy for Carly Lamont’s situation, the wait time remained at 18 months.
In May of 2008, the parents went to B.C. Children’s Hospital to meet with Dr.Miyanji and the department head of orthopedic surgery, Dr.Chris Reilly. From the outset, Ms.Watson said that Dr.Reilly, whom she had never met before, was hostile and aggravated toward her. They recommended that Carly take off her back brace, arguing that it would let her bones and muscles settle into a position that would make the surgery easier. But with surgery still over a year away, Carly’s parents asked if she could be fitted for a new brace to wear for half the wait list time because she was undergoing physical changes and puberty at the time. That request was denied.
At this point Dr.Reilly said he was displeased to hear Ms.Watson speaking to the media and the government, and asked her to remove her petition site. The meeting concluded. Two months after hearing nothing more from the hospital or the doctors, they were suddenly informed in August that Carly had been removed from the waiting list, and was told to seek help in Alberta. The letter read:
“We have reviewed in detail all of our correspondence and our detailed notes. It is clear that you are not in agreement with some of our medical recommendations.”
“There have been many communications regarding Carly’s care both through our offices, the hospital administration and also public media, including newspapers and the recent website.
“We feel that we have not been able to establish a therapeutic relationship with your family that will allow us to care for Carly.”
The letter was signed by Dr.Reilly and Dr.Miyanji. The hospital said they would not be providing further treatment for Carly Lamont, except on an emergency basis.
One more meeting was set up on December 4, 2008, with a mediator, in the hopes of coming to an understanding. But according to Susan Watson, Dr.Reilly merely told her that to be reinstated to the waiting list she must agree to all recommendations, stop talking to the media and the government, and delete her petition website. Ms.Watson refused, she says, to be be bullied.
In an interview with Susan Watson last week, she said that it is now November of 2009, and nothing has changed to ameliorate the situation. The parents have travelled to Alberta for consultations, but they are still upset that they can’t get the treatment they need for their daughter in the province in which they live. Visits to orthopedic care in Alberta has confirmed that Carly’s spinal curvature has deteriorated. Worse still, the situation has strained the family to the point where Susan Watson and her husband, David Lamont, have filed for divorce after 18 years of marriage.
Now Ms.Watson wants an apology from the hospital, and to have her daughter reinstated to the waiting list. While her ex-husband has been granted access to the orthopedic department of B.C. Children’s Hospital this past June to do check ups on Carly, Ms.Watson is not allowed to attend, she says. Her husband doesn’t want the surgery to be done in Alberta, and would not let Ms.Watson put Carly on a waiting list in that province.
Now she just wants the impasse to end and have her daughter receive the surgery she needs in B.C. She says she never wanted to queue-jump the waiting list, nor embarrass the orthopedic department of B.C. Children’s Hospital, but only to bring awareness to the long waiting times for non-emergency surgeries for children.
As the months pass by without the surgery, Ms.Watson becomes increasingly despondent. And just recently in Vancouver, B.C. Children’s Hospital had a breakthrough surgical technique with an 18-year-old patient named Carmen Stolk to correct her Scoliosis. The new, less invasive surgery which reduces the trauma done to the patients’ back, allows them to get up and start walking the very next day. Carmen was the first patient in B.C. to receive the new technique.
As Carly’s parents argue over getting their daughter the surgery she needs in Alberta, a less invasive procedure awaits right here in B.C. Now they want a reconciliation with the hospital, an end to disagreements, and to get Carly up and walking like any other 12-year-old girl.
Dr.Firoz Miyanji and Dr.Chris Reilly were unavailable for comment for this article.
Susan Watson’s petition site can be signed here.
November 12, 2009 at 9:06 pm
Raph- Interesting story but I imagine there is much more to this story than is told here. Scoliosis is not like appendicitis. There are degrees of it. Some scoliosis is slight and doesn’t need correction or can be corrected with the use of a brace.
The surgical procedure is invasive and very painful and should not be taken lightly. Children have to be placed on a frame that looks like an ironing board and is sandwiched between another board and flipped every two hours. Then there are many months in full body casts. When children are growing surgery is put off as long as possible to prevent the need for more surgery if the spine continues to curve after surgery.
That is why children with scoliosis during puberty are monitored closely and surgery is delayed as long as possible.
If I was that mother I would go and apologize to those doctor’s. Her daughter’s well being should be her first priority.
It would be quite ironic if her daughter gets the new procedure which is much less invasive as a result of the wisdom of the doctors to refrain from operating for 18 months.
November 12, 2009 at 9:08 pm
Sandra,
Unfortunately I cannot know more about this story than what the mother told me in the interview because, as you see in my article, the doctors did not answer requests for an interview. That’s also kind of the problem, isn’t it? A condition of getting back on the list is to stop talking to the media and to remove the petition to stop these waiting lists.
It would be nice if I could hear the doctors side of the story.
November 12, 2009 at 11:01 pm
Scoliosis is not usually life-threatening and surgical fixes are controversial. In this case, I will side with the real doctors vs spin doctors.
November 12, 2009 at 11:56 pm
Raph- These are not waiting lists in the usual sense of the word. Rather they are assessment parameters, a length of time during which the child is monitored during her growing phase.
If the curvature accelerates rapidly then she is moved to the front of the line. If not and the brace works then surgery can be avoided.
From your article you mention that this girl has been seen in the US and Alberta as well as here in BC. Although I do not know this family this sends up red flags for me.
It may be that the mother is not listening, or does not want to hear the reality of her child’s medical options. As many doctors have agreed to see and assess her I would not fault the medical system.
She may have taxed their patience beyond endurance and that is why they did not agree to be interviewed by you.
As for the petition to end the waiting lists, they aren’t waiting lists so she is doing nothing but causing fear in other parents. Wouldn’t she rather have these doctors looking after their patients instead of calming fearful parents.
I personally come at this one from both ends. I was a pediatric nurse (trained at Sick Kid’s Toronto) and I also have scoliosis and have had the surgery. Twice.
November 14, 2009 at 9:15 pm
I just wanted to let people know that as Carly’s mother, we were told right from the beginning of our first meeting with Dr. Miyanji in October 2007 that he agreed with what the doctor had said in the states – Carly needed surgery soon – spring to early summer 2008. We were told of the wait list but Dr. Miyanji said he agreed with the doctor in the states as to the time limit.
We had kept in constant contact with former President of BCCH Sharon Toohey through all of this starting with Carly’s horrendous diagnosis in 2003 of a 70 degree curve after a few years of us asking her former Orthopedic Doctor at BCCH why Carly leaned to the side when she walked – we later found was a red flag for Scoliosis – and why she dragged her right foot so badly that we had to buy her a new pair of shoes every few months.
Carly was 7 years old at the time of diagnosis. We found out afterward that young girls with Cerebral Palsy are one of the highest groups to get Scoliosis at a young age.
At 70 degrees she was already 20 degrees over what is considered a surgery patient and had to wear a back brace 22 hours a day 7 days a week, then had more extensive castings done on her back in the States done under general anesthetic which she wore 24 hours a day for 6 weeks at a time.
My ex and I made a complaint against the Orthopedic doctor who we feel missed Carly’s Scoliosis until it was far to late to do anything but brace her until she was ready for surgery which she was at the end of 2007.
Former President Sharon Toohey assured us that making a complaint would not hinder Carly’s care at all at BCCH and told me at the beginning of 2008 that as Carly’s care was going so well, that we could cancel all appointments in the States, which we did.
People out there judging, might also want to consider that we visited Carly’s old doctor at BCCH after our first few trips to the States to keep him updated on what was going on and never said we were leaving the hospital, just that we were checking out what options we had. I have this visit documented.
On our first visit to the States in September 2005, the doctor told us that if a child was brought in to him in Carly’s condition and was older, he would do surgery immediately.
However, since once you fuse the spine, it stops growing and at 9 years old Carly’s body still had a lot of growing to do, he recommended bracing for as long as possible which we had already started when Carly was 7.
You might also want to know that all of Carly’s medical files went missing from BCCH in 2005 when my ex requested them to try and find out what had happened to Carly’s spine. They are still gone to this very day and the only things we have are copies of letters that were sent to other doctors caring for Carly’s other health issues.
In one, her former Orthopedic doctor at BCCH states – he does not know if the Scoliosis came on quickly or over a period of time. I have all copies saved.
I have done extensive reading on Scoliosis and have lived through this with Carly every step of the way.
So, as sor says, yes, Scoliosis in not like appendicitis, you are quite correct there, and yes some cases can be corrected by wearing a brace, in fact some cases you have to do nothing at all but watch the spine as the child grows, but at 70 degrees Carly was already a surgery candidate in 2003 and at 90 degrees in February 2009 even more so.
And as sor says – there are no waiting lists. How do you explain that written in newspapers and on T.V. newscasts in Vancouver it is documented that 50 surgeries were cancelled between April and July of 2008 and that there are such a lack of ICU nurses that children are literally showing up on their scheduled day of surgery and told to go home, they will not be getting it done that day and will have to come back some other time. Some kids are on their second try.
How, then, can there be no wait lists when all these kids are being rescheduled – a documented fact and also that no one will tell me how many surgeries have been cancelled besides the 50 in 2008?
My ex and I were working together even up to the meeting on May 8th 2008 when Dr. Reilly asked me why I was contacting the Government and using Capital Letters in some of these correspondences and why was I contacting the media.
I told him at this point that since I had never met him before, that I was sure he was a great surgeon and person, but that I would continue to contact anyone I could to try and help not only my daughter but all kids waiting at least a year and a half for surgeries they should not have to wait more than 6 months for.
Nothing was said to my ex and I for the rest of May, nothing through all of June, nothing through all of July until Carly was to come in for her 6 month check up and X-ray on August 5th 2008 when instead we were handed the letter saying Carly was out and gave us names of Surgeons in Alberta to deal with at our own cost.
This is when everything went horribly wrong with my ex and I and even though he was the first to make a petition against the Government, which we have over 1,200 signatures on, everything was then turned against me and I was told I was a bad mother and treated nastier and nastier as the months went by.
He walked one week after our December 4th 2008 “therapeutic healing” meeting where I refused to bow down to the Surgeon we had not even chosen to do Carly’s surgery, but had seemed to take over. This was on one of my best friends birthdays and 2 weeks before Christmas.
So as you can see, I have done my homework, I know more about back braces, casts and surgery than I cared to ever know about and have had my life turned upside down because of it.
Maybe this will give people out there a little bit more information to go on before they let me know about Scoliosis and how it is dealt with.
I have done nothing illegal or wrong. In Canada we have our Freedom of Speech, Opinion and Belief, not to mention our Human Rights and I am certain that doctors must take the Hippocratic Oath which includes: DO NO HARM.
Raphael could only write so much so I hope this helps people to understand a little bit better on what my family has gone and are going through before “enlightening” me on their own knowledge of the situation.
Thank you all so much for reading this.
Sincerely,
Susan, Carly’s Mom.
November 14, 2009 at 10:16 pm
Susan, I for one support you, as you know, I have a rare lung disorder that took years to receive a diagnosis (atypical CF and bronchiectasis). When I was a child, my parents were told by doctors that my illness was all in my head, that I was faking, it, that it was psychosomatic, psychogenic, and so on. These allegations, although, proven false had an adverse influence on my self-esteem as a young girl, as well, they lead to medical negligence. Doctors tend to accept their colleagues letters as the gospel thus causing a failure in treating the patient. They look towards the letters and “not” the patient. Often, this means that testing may not even be done or followed up on. Indeed, this was my experience. In other cases f everything appears normal in the tests despite symptoms, we are told there is nothing “wrong” and to get on with our lives. This of course is hard to do when one truly is unwell or in Carly’s case requires surgical intervention.
Now, I require a double lung transplant due to years of medical neglect. It’s unfortunate that people are too quick to blame the patients and their families when medical politics is alive in well in this country. Just look at how Canadians with lyme disease have been neglected. Truly, in many cases, these individuals have been medically abused. W5 provided an excellent report about this yesterday night.
Scoliosis can lead to life-threatening medical problems including causing restrictive lung disease. Carly and all children deserve the best of care. Keep on fighting, never give up, and please keep the faith. You are both in my prayers and thoughts.
November 14, 2009 at 11:06 pm
Thank you Mary. I am so sorry for what you have and are going through. I have a friend who has ulceritive colitis and was told the same thing – it was all in her head, then her brother was blamed because he teased his younger sister!
I too have been dealing with the medical system for myself since I was 12 years old – I’m 44 now – and the mistakes and misdiagnosis’s by doctors are astounding.
I have Crohn’s Disease which resulted after many years of surgeries and many times on Total Parenteral Nutrition (feeding through a catheter inserted above the heart instead of eating) in which one case the doctor could not get the catheter in and instead poked a hole in my lung causing it to slowly collapse while I was repeatedly told nothing was wrong and to stop bothering the nurse – she had sick patients to look after. I ended up having an incision made in my side and a tube inserted to expand my lung again.
I’ve had many Ovarian cysts – one ignored so long by doctors who I kept telling I was feeling sicker and sicker only to be told I was fine until it had grown to 10cm in diameter and had I had to have my right ovary and fallopian tube removed.
I was then told I could never have children after a test was done 3 years before I became pregnant with Carly – Surprise!!!
A misdiagnosed 1″ kidney stone that a doctor told me for over a year was just a bladder infection until the pain became so bad I finally had to have a radioactive liquid put into me while being X-rayed to diagnose the stone then had stents put in while I waited on a list to have lithotripsy done. When it finally was, the person reading the X-ray and my doctor told me it was completely gone only to have the stents that had been in for months while I waited my turn, be taken out and within a few hours I was in the ER in excruciating pain, got bumped from surgery and had to have a needle inserted into my kidney for a week to remove the resulting infection. I then had to have stents put in again until I could have my next try at lithotripsy which thank god worked that time.
I now have an ileostomy due to the Crohn’s that started at 12 and have what is called short bowel syndrome as all of my large and 3′ of my small intestine had to be taken out in 1989. I have to receive monthly shots of B-12 as the area of intestine that absorbs this vitamin is gone in me.
This had now caused me to have boughts of dehydration where I have waited hours upon hours in Er’s just to have an I.V. put into my arm which I told them I could do just sitting in a chair and have it started right away but I was told I had to wait every time for a bed to become available.
After years of this I have found out this year that my kidneys have most likely been damaged by all these times of dehydration and my bad health from Crohn’s – I was told I was one of the worst cases seen in Canada – and may in the future need a biopsy to see how bad my kidneys are. I have been able to up my hydration level by drinking water constantly but in June of this year I was 9 points away from immediate dialysis.
I am also having my thyroid checked out and I have a full blown case of Osteoporosis which is apparently unheard of in someone my age but has happened because of all the years of bad health.
Unfortunately, like you say, doctors not only take other doctors words as the gospel truth, they, as humans, do make mistakes all the time – our cases good examples – and the bottom line seems to be “Let’s cover our colleagues asses in case this ever happens to us.”
We have billions for the Olympics, millions to make a new retractable roof on B.C. Place for the 2011 Grey Cup even though the B.C. Lions can not even fill the seats there for their own games.
Meanwhile our Government cuts programs to seniors, women and children at risk, surgeries, cutbacks to schools, libraries you name it.
When exactly to the lesser people of this Country come in first?
Only when enough people stand up together and say “Enough is enough!”
Are there people out there willing to do so?
November 15, 2009 at 9:00 am
Susan,
I have been following your story for some time now, and I am completely appalled at how the medical community has failed you and Carly. I cannot believe the arrogance of these doctors that would refuse your child, any child, necessary surgery because they don’t like what you are saying to the media. Who cares what you are saying in the papers or on petition sites or to the media? The only thing that matters is your little girl and her ridiculous wait time for surgery. What is wrong with these people? These are our care providers? Somewhere along the way they forgot their humanity, their purpose and responsibility as medical practitioners, and most important, what really matters at the heart of this dispute…..CARLY. They should all be ashamed and disgusted with their lack of compassion and professional etiquette.
November 15, 2009 at 10:17 am
Thank you Kelly. It is nice to know that there are people out there who understand and have compassion!
Susan and Carly
November 15, 2009 at 4:06 pm
It is true, what really matters at the heart of this dispute is Carly. If only all the adults involved could keep their focus there. Isn’t it more important for Carly to get the treatment she needs than for her mother to be right? If wait lists need to be shortened then deal with that later. Right now take care of Carly’s needs first. With any luck all the waiting and wasted time will turn out to be adventageous for Carly and she will be able to have the less invasive procedure performed if surgery is required and if the “grown ups”can ever find a way to work together.
November 15, 2009 at 4:47 pm
Hello June,
There really has been very little waiting and wasting of time to be advantageous to Carly. If the wait list is true, which is unknown at this point, she would only have had her surgery in August of this year.
If you had read what I wrote above, there is no question. We have been told by 2 different doctors that Carly needs surgery and unfortunately, the doctor in the states who we spoke with was going to put us in touch with a doctor who did the less invasive surgery in the states but Carly’s curve was too large, even when she was first diagnosed at 7 years old to be considered a candidate.
I don’t want to be right. I know I am. Children, any child, not just my daughter, should not be waiting this long for extremely important surgeries.
Our Government has said: “If wait times for a specific surgery or procedure become unreasonable, B.C.’s health system would need to shift resources to meet patients’ needs.” How can 2 doctors perform all these surgeries for all these kids in British Columbia in a timely manner, and then also do appointments and X-rays with each child and their family?
And, worst of all, I do believe that all doctors in Canada must take the Hippocratic Oath which includes: DO NO HARM.
How can using my Freedom of Speech, Opinion and Belief; my Human Rights be considered such a crime as to kick a child out of BC Children’s Hospital’s Orthopedic Department and have us told to go to Alberta at our own cost.
I believe this is Canada that we live in, not a third world Country.
How much later do we sit and wait to deal with wait lists? Years, decades, more?
Until someone’s child dies?
I believe the only ones who need to do the growing up are our elected Government and these doctors who seem to think they can play God with Children’s lives.
I pray you never have a child put in this situation. It is completely unbearable and we have been dealing with this behaviour for over 6 years now from BCCH.
I have done nothing illegal or wrong for Carly to be treated this way. I have only brought forward what I consider to be a major problem that needs to be dealt with for all our children now, not years in the future, no matter what kind of surgery they need.
Sincerely,
Susan
November 16, 2009 at 12:49 pm
This girl has gone through enough as have the other children in this province, Susan I back you ,
In February of 2009 I attended the doctors appointment in Edmonton Alberta with Susan and Carly , the results of the appointment was not a good out come for Carly, her back was at a 90 degree curve and the operation from the top specialist there was Surgery, That was almost a year ago , so you as readers can imagine what the curve is now. We are not talking about the mother here we are talking about a 13 year old girl, and other children on wait lists waiting and some being refused treatment, Any mother who loves their child/ children would be doing the same as Susan has , she has done no wrong , she has only studied and researched what is right for Carly and other children, Have a talk on the phone with her, hear her story , go to the appointments with Carly, see what Carly’s life and other childrens life are like , until you live this life breath it eat it , you will never understand
November 16, 2009 at 1:19 pm
Susan-
Are you able to raise the funds needed to get the surgery done in the USA? What about the private hospital in Vancouver, would they be able to provide any options?
I’m afraid the only answer to our failing health care system is to introduce some competition in the form of parallel care as it is done in sweden, france, etc. There is no accountability in our medical coverage and those who hold the power are able to make all desicions, sometimes regardless of wellbeing.
Best of luck.
November 16, 2009 at 1:28 pm
I think the mother has gone a bit overboard here. Yes, all of these kids are important, but at some point her maternal instincts should have kicked in and she should have gotten the surgery. Maybe it was a blessing in disguise since Carly can now get a less invasive procedure, but this wasn’t known when this little war started.
Of course the doctors did not want to work with a family that is publicly bashing them, legally that is stepping into a minefield. Did you ever consider that maybe the legal team considered this to be too big of a risk? And how could you expect them to be confident in their work, knowing that the mother is going out of her way to publicy demean them. Do they have any control over wait list times or health care funding? No! So why pull them into it? They are simply doing their jobs. They do the most critical jobs first, and if Carly had gotten too critical they would have moved her up. But other kids needed the surgery slots more. Take it up with the government, and leave the doctors who are just trying to work in the system alone.
I feel so bad for Carly. She shouldn’t be caught in the middle of this. Did you ever consider getting her surgery first, THEN waging a war against the people caring for her? I wonder what she has to say about all of this…having to wait longer for a surgery that would increase her comfort, having to travel more to visit doctors, and losing her father and having her family ripped apart. Is this fair to her?
November 16, 2009 at 2:27 pm
Dear Concerned Citizen,
I did not bash these doctors. I used my Freedom of Speech, Opinion and Belief to talk with the Government and the media which my ex was all for, to make the Government follow their own guidelines set out for wait lists.
How is this such a crime against these doctors?
In fact it was not until the doctor who we had not even chosen as the surgeon for Carly stepped in and told me to stop talking to everyone at our meeting on May 8th, 2008, which nothing was said all through the rest of May, all of June, all of July, until we showed up for Carly’s 6 month check up and X-ray and instead of that happening, we were handed the letter by our “new” Surgeon saying Carly was kicked out of the Orthopedic Department and off the wait list she had been on for 6 months unless their was a total emergency and to go to Alberta for help.
You may also like to know that we already know that Carly’s spine is far too gone and was from the time her Scoliosis was found at 7 years old for the less invasive treatment. The doctor we spoke to in the states was going to put us in contact with a doctor who was already doing this procedure, but Carly’s spine was deemed to far gone for it even then at 70 degrees. She is at 90 degrees or worse now so I am assuming this has not changed.
This was when the doctors were pulled into this.
How dare they kick a child out for the horrific crime of her mother talking to the Government and the media about what had happened.
So much for the Hippocratic Oath.
So much for being a Canadian Citizen but being told by people what I can and can not say.
I did nothing illegal or wrong and for this the doctors are playing God now because I spoke my mind on the too long wait lists for all children, not just Carly.
I never once said I wanted Carly moved ahead of any child, just that these wait lists are ridiculous and the Government needs to be held accountable and now because of what they have done, so do these doctors.
No, none of this is fair for Carly.
A real father would have stayed and fought for what he started in the first place.
Hopefully, one day, someone you love will not be put on a too long wait list, then denied surgery because a doctor doesn’t like what you said about something.
You may also like to know that we were told by these doctors that we should consider ourselves lucky that Carly was only at a 70 degree curve. There are kids on the list waiting at 100 to 110 degrees.
This does not make me feel lucky. It makes me feel physically ill for those families
As far as I know, this is against the law, and they have also broken the Hippocratic Oath which includes: DO NO HARM. This is being looked into right now as I have been doing much research on this problem.
Try living this life for a day, a week, a year or more and then make a comment on how a mother’s maternal instincts should “kick in”.
Sincerely,
Susan
November 16, 2009 at 3:03 pm
Susan,
I have read many of your summaries on your situation, so you do not need to keep repeating them. I understand what has happened. I feel sorry for you, but I think you should have thought about this in a more rational light. These doctors are trying to work in this system, and I think you should look at this from more than one perspective. I appreciate that you are trying to fix this problem, but you need to see all sides of a situation to fix it. By not addressing your opposition and their concerns, you are weakening your own argument.
I also think that you need to not assume my situation. You have no idea who I am or what my background is, and I do not appreciate your dismissing me as if I do not know what I am talking about. I know all about the health care system, and the laws surrounding it. I have a background which makes me quite able to give a comment on it.
November 16, 2009 at 4:18 pm
I cannot believe that any doctor would have the heart to deny Carly’s or any other child’s surgery just because the media is portraying them as the bad guys(which they aren’t far from)
I hate wait lists.
November 16, 2009 at 5:08 pm
This is so sad, and I hope that Carly will be able to get the surgery that she needs because she is just amazing!!!
Go Carly and Susan Go!!!
November 16, 2009 at 7:05 pm
Concerned citizen, Susan and Carly are my super heros. Susan has not gone overboard. Until you are in their shoes, how can you understand. God Bless, Susan and Carly!
November 16, 2009 at 7:35 pm
I wonder exactly what “concerned citizen” is concerned about? Sure, maybe the doctors don’t have any say and are doing their best, but the doctors are administrators too. They push people aside and promote others on waiting lists all the time (let’s just check with the Abbottsford Heat!) and if you aren’t quite in the daily demographic, you end up being the pushed. Why blame the Mum? I can see that Mum went as far as could “politely” and “quietly”. Maybe the system actually pushed HER over the edge, with worry and wait, with letdown after letdown. If “concerned citizen” is actually Gordon Campbell (and I DO suspect this…), why not step up and help? Do something constructive “concerned citizen”, don’t rip Mum – she’s been abused enough. Best wishes to Susan and Carly, I hope some good news comes along soon!
November 16, 2009 at 8:48 pm
Concerned citizen have a walk with Carly, live her life , see what this child goes through on a daily routine, live her life and see how hard it is for HER, again this is about a child not the Mother or Father, and again this is about many children , So Concerned citizen come and see what this girl goes through and many other children on a daily and nightly routine. These are children who need the help from Adults .
November 16, 2009 at 9:10 pm
Carly needs surgery, why is no other doctor anywhere stepping up?
I don’t expect or want a reply to this, it is just very upsetting.
November 17, 2009 at 4:06 pm
I have been involved in providing information to Susan Watson and what assistance I could, being on disability myself, for almost two years.
After working for more than twenty years as an Educator and Defender of Universally Recognized Human Rights and Fundamental Freedoms, I can say with great confidence and utter disgust that this and many other similar situations, such as my own, constitute violations of Human Rights guaranteed by the International Covenant on Economic, Social and Cultural Rights, which was Ratified (given the force of law) by Canada in August 1976. I shouldn’t have to be doing this, as it is the responsibility of the government to provide Human Rights training at every level of education, which they simply have not done, so I will quote here, the pertinent section of the that Covenant.
Article 12 of that Covenant confirms the following:
“1. The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. 2. The steps to be taken by the States Parties to the present Covenant to achieve the full realization of this right shall include those necessary for: (d) The creation of conditions which would assure to all medical service and medical attention in the event of sickness.”
Not only does this fly in the face of be required to pay medical premiums and then only being covered for the “medical service” provided by the doctor rendering diagnosis, but also, the fact that we then have to pay additional legal tender (a substitute for money) in order to receive the necessary “medical attention”, that being whatever therapy, treatment, surgery, etc. that may be required to recover one’s “highest attainable standard of physical and mental health”.
People of this country (and most others) have been intentionally kept ignorant of their Human Rights, so to allow these de facto corporate governments to continue to deny or violate them. Well let me tell you folks, Human Rights are Supreme and no “man’s law” can override or subvert them. Neither can the “government” restrict our access to full realization of any of our Human Rights by making them subject to a “budget”. If people only knew the way things were supposed to be, as confirmed in the 2nd Reading of the British North America Bill. All of our social programs were to be funded by the entity created by the B.N.A. Act, which was a “Central Legislature”, not a “Federal Government” as they call themselves and equal amounts of these funds were to come to the provincial legislatures through “capitation payments”, so much for each member of the population of each province, so to allow the Provincial Legislatures to provide equal levels of social programs to every individual member of their populations.
We are all being denied our Human Right to “medical service and medical attention in the event of sickness”. The question is, what are the people going to do about. It is more than clear that the “government” intends to do nothing.
Go to the Website of the High Commissioner for Human Rights at the United Nations and you will find all of your Human Rights and the protocol to follow in the event they are denied/violated. The Right to file a formal complaint to the Human Rights Committee responsible for monitoring compliance with this Covenant is found in the 1st Optional Protocol to the International Covenant on Economic, Social and Cultural Rights.
One thing is certain, if you do nothing, nothing will be done. It would also be advisable to remember, “If you always do what you’ve always done, you always get what you always got.” In this case that is, nothing.
I have been disabled by the profit oriented behavior of a licensed, Biological dentist, whom was paid to remove mercury amalgam dental fillings. As result of the sped-up process to remove 16 fillings, I was mercury poisoned. The other “gift that keeps on giving” that this dentist bestowed upon me, was result of his instruments being contaminated with the Hepatitis C virus, for which there is no “approved” cure. Just the same and in spite of my extremely low levels of energy and motivation, I will do my best to assist Susan and Carly in preparing and filing a formal Complaint to the United Nations, for violating the Human Rights of this child. I cannot file a complaint on behalf of everyone, so many of you will have to take the action yourselves, it is not difficult.
November 18, 2009 at 12:35 am
Susan, you need a reality check. I do not mean to be insensitive, but please hear me out.
If you want to help Carly and the other kids, vote for a new government, one who won’t make the biggest cut to social services in Canadian history.
And leave those doctors alone, they havn’t done anything but their jobs. They don’t have control over the funding and staffing. They are bound by restrictions. They work very hard and shouldn’t be judged so harshly.
I think it’s commendable to attempt to change the flaws in our system. But make sure you do your research and find all of the angles and perspectives before you jump in.
Your information is biased and unfair. Do you know anyone who works within the constraints of the health care system? It’s not easy, and they are under constant stress and receive plenty of abuse for things outside of their control (like delays and waitlists).
Have some compassion. Do more research. And try to be more accepting of others’ opinions.
November 18, 2009 at 12:47 am
I’m a little confused…what do you want from these doctors?
I understand you argument about waitlists and free speech and all that, but what about Carly?
What’s your plan for her?
Do you want these doctors to perform the surgery?
Or someone else?
This IS about Carly, so, how will she get her surgery now?
November 18, 2009 at 1:04 am
I’m sticking with the doctors on this one. Susan should have put her daughter’s well being ahead of everything else. If she did that, wouldn’t have daughter have her surgery by now? Say you’re sorry and end this.
November 18, 2009 at 6:22 am
Concerned Citizen,
Please don’t sock puppet under different ID’s. Stick to one ID.
November 18, 2009 at 1:53 pm
Dear Concerned Citizen,
As I have said before, these doctors had nothing to do with any of this. We were dealing with the Government and the media and trust me I have never voted for this Government once, so how would you even write that down? Do you have special powers that allow you to know who people vote for?
The doctors chose to bring themselves into it by kicking Carly out and off the wait list and telling me who I can and can not talk to. I don’t think doctors have the authority to do that. I can speak to whoever I want to and the doctors should just keep on doing their jobs – and I realize they can’t do anything about the waitlists, but they should also not deny a child surgery for something that has nothing to do with them. If they were offended by me talking to the Government and media, that is too bad. They should have been thankful. I was trying to get help for these understaffed doctors and nurses. If this hurts their feelings so bad, then they are not very professional doctors, are they?
I had much compassion for these doctors until I was told by them what I can and can’t do. That is none of their business and I do believe a large part of this is due to the fact that my ex and I put in a complaint about the doctor that we think missed Carly’s Scoliosis in the first place.
We had no problems with Dr. Miyanji. The problems started when the Head of Orthopedics seemed to step in where he wasn’t wanted.
You might also like to know that we were sent to an Orthopedist named Robert Ford by Dr. Miyanji back in March 2008 to have a new back brace made for Carly. We had never even heard of this man. Someone else was making Carly’s braces before that. We went in and met him and his wife and they were wonderful. They showed us the material for Carly’s new back brace, which I believe he said came from England and was much lighter and more comfortable than the ones Carly had worn previously. They even ordered special undershirts for Carly to wear with the new back brace and all they needed was a prescription for a mild sedative so that Carly could be awake but sleepy while she was casted for the new brace.
My ex phoned Dr. Miyanji for this prescription since he was the one to send us to Mr. Ford for the brace in the first place and we didn’t hear anything back until a while later when we were told that Dr. Miyanji could not order this for Carly as he had not known her for long enough?!! Exactly how long does a doctor need to know someone to order a mild sedative?!!
I called Mr. Ford and he said he was going in the next day to see the doctor about another child and that he would just get the prescription for her then as he had for many other children just like Carly.
I did not hear back from him for a bit so I called and he told me that he was sitting at his desk thinking that he had lost his whole practice. I was horrified and asked if this had anything to do with Carly to which he would not answer but just said it was not our fault.
We then received a letter from Mr. Ford which I still have a copy of saying that “Although this had never happened to him in his entire career, he had to follow what the doctors said and therefore would not be making any type of spinal device for Carly.” He wished us good luck and said he would keep in touch, but I tried to contact him a few times after this with no response ever again.
Kind of amazing that all of Carly’s medical files go missing from BCCH and still are to this day and also that this man we had been sent to for a new brace could now not make it even though THIS HAD NEVER HAPPENED IN HIS WHOLE CAREER before Carly.
I would love for Carly’s surgery to be done by doctor Miyanji but I do not believe I need to apologize for standing up for my daughter’s Human Rights.
We also had a chance to have the surgery in the states, and my ex was writing a letter to our old sponsor for the Shriner’s Hospital as he had been asked to do because amazingly, on the exact same day that Carly was kicked out of BCCH, we received a phone call from the Shriner’s and one a few days later. I was unable to respond to them as I had just had my wisdom teeth taken out a few days before and unfortunately the dentists did not believe me when I said something was wrong. They kept telling me it was something called dry socket. One week before our family vacation when I was still in excruciating pain the Surgeon decided to send me for an X-ray one day, an ultrasound the other, and a CAT Scan on the Thursday and told me to come in early Friday morning and not to eat anything “just in case.” The just in case turned out to be infected bone shards left in my jaw and I had to have surgery under General Anesthetic again to have this removed the day before our holiday. Another goof by another doctor.
My ex never returned the phone calls to the Shriner’s until we were home from our “vacation” which for me was lying in bed on pain killers and antibiotics. My only trip out was to the Hospital in Nanaimo for help.
This is when the Shriner’s told us that Carly was no longer on their list for surgery either as my ex did not return their 2 calls. Our sponsor said this was unheard of and that is when he asked my ex to write a letter for him to send to the Shriner’s.
Another amazing co-incidence. The call from the Shriner’s who are closely related to BCCH – they paid to have the Gait Lab built for kids here – phone on the very same day that Carly is being kicked out of BCCH.
So many strange things.
I also took Carly to see one of the Surgeons that could do her surgery in Edmonton where the doctors at BCCH had told us to go to at our own expense. I could have put her on the list that day – February 8th 2009 and the wait lists are shorter their because there are more Surgeons in Alberta but my ex has decided that he and only he has a say on where Carly’s surgery is done and the only place he will agree to is BCCH.
So who exactly is looking out for Carly’s best interest. I have done everything I have been asked to do, including traveling to Edmonton but my hands are tied.
How is this being biased and unfair. As I said before, you know nothing of what Carly and I have gone through. I have done everything in my power to fix this situation but one thing I should NEVER be told is who I can speak to or your child is out.
I don’t believe I should be the one saying I am sorry. I have done nothing wrong. I did not take the Hippocratic Oath to become a doctor which I don’t believe includes anything such as – kick a child out if you don’t like what someone has to say.
There sure should be some huge apologies happening here, they just shouldn’t have to be coming from me.
Maybe, just maybe, it is you who needs to do some more research and accepting of other people’s opinions.
Maybe, just maybe, could it be you who needs a little more compassion?
But I already know your answer to that one so you don’t need to keep telling me what a horrible mother I am. You have done that far enough already without knowing all of the facts and without living with the constant stress and abuse you say these doctors deal with. I deal with it every day too. I just don’t take it out on helpless children.
Sincerely,
Susan
November 18, 2009 at 6:12 pm
To “Concerned Citizen”
I am responding to your post for the benefit of others.
All due respect but, based upon the legal definition of the term “citizen” (of which I’m sure you aren’t aware), it is no wonder you hold the position that you do on this matter.
I also doubt that you are aware that all “governments” are pure, out-for-profit corporations. Aside from the fact that “Canada” does not operate as a true Sovereign Nation by exercising it’s “exclusive power” to issue interest free currency (that would be real money – not just legal tender like what’s in your pocketbook), I have reams of evidence establishing their corporate status as fact, including their own admission. Another indicator is found in the way they identify themselves, “the government of the Province of British Columbia”. See their own language rules in the “Canadian Style – A Guide to Writing and Editing” published by the Translation Bureau, a special operating agency of the Department of Public Works and Government Services Canada and you will see the change in context that occurs when one capitalizes the first letter of a generic geographical term, i.e. “Province”. This presentation of the term is referring to a corporation. One must use a lower-case (small) “p” if referring to the geographical area. Now, on to the legal definition of “citizen”: “one who owes allegiance to the State and is guaranteed certain rights.” Note the capital “S” used in “State”. If you truly are a “citizen”, then take note that, on top of owing allegiance to a corporation, you only have protection of “certain rights”, such as those found in the falsely named “Canadian Charter of Rights and Freedoms”, passed in the United Kingdom’s Parliament and which, remains on the Statute Books of the United Kingdom, and which, does not protect your 3rd Natural Right (given by the Creator) to: “one’s own property”. Personally, I prefer to just be a “man”, with all of my Natural and Universally Recognized Human Rights and Fundamental Freedoms. In fact, because I was born in Vancouver, I do not have a single piece of “government” paper that says I am a “Canadian Citizen”. In fact, the only ones who have such a document, are those who came to “Canada” and wrote the “Citizenship Exam”. So, unless you are an immigrant, I doubt you have documentation proving your status of “citizen”.
In relation to the so-called “health care” system operated by the corporation of British Columbia, one need only look at the responsibilities of the Minister of Health, as found in the copyright protected and therefore, “private” statute called the “Ministry of Health Act”. It comprises just one, brief statement: “the efficient and profitable operation of the Ministry.”, nothing about caring about me or you, or assuring that everyone has unrestricted access to real health care, just go and make us a profit.
BTW- this is also why they charge you legal tender if you wish to receive a copy of the “Official Version” of any one of their statutes. This is of course, in addition to the more than 160 different forms of taxation that we are all subject to every day of our lives. Makes it pretty clear, who is serving who, doesn’t it. I would suggest you do a little research before expressing mere “opinions” about things of which, you have little or no knowledge. Knowledge is only power when it is applied appropriately. The best kind of power is power you can share with all others. I know my words can make people feel they have been made a sucker through all their life, but I say them with hope of sharing the power of knowledge. So, I do hope things are a bit clearer now, for you and all other readers of this blog.
November 18, 2009 at 8:10 pm
The debate here could go on and and on and on…..but still the fact remains that a child was kicked off a wait list. How is that fair? Empathy for doctors who kick a child off a wait list……I don’t think so. I believe we have some of the finest medical care in the world right here in our province. The wait list is a non isssue now. She is no longer on it. That is the issue. When will she be put back on? Irregardless of what her mother says or does, who she writes or doesn’t write. What really matters is that Carly should still be receiving care. That is the most important issue. I hope very much it will be the outcome. For Carly.
November 23, 2009 at 8:57 am
its funny how the liberal goverment can spend billions of dollars on the winter olympics but then forget about our childern and senior citizens and ruin our healthcare system and also start privatizing our hydro system too and the people of bc cant see wat gordo is doing to our province people better wake up before its too late
November 23, 2009 at 7:32 pm
This is a very sad story and this story should get major media attention. Carly deserves to have her surgery. These long wait lists are absurd especially when it comes to our CHILDREN. Just because Carly’s mom exercised her right to free speech shouldn’t result in Carly getting booted off the wait list. The hospital should do the right thing and immediately reconcile with Susan and Carly. Carly doesn’t deserve this.
November 25, 2009 at 12:33 pm
There is a childs life at stake. What matters more than that???? They get bad publicity and if her Mom says a word about her care, she is kicked out??? And here I thought BC was part of the democracy of the free world! Basically, if you do0nt let them do whatever they want to your child, you cant get care?
November 26, 2009 at 6:47 pm
Health care, including optical and dental, is important to every person in Canada. It is a crime that so many people go without necessary care and supplies due to their lack of special paper and coins.
November 28, 2009 at 11:40 pm
I know Carly and her family through a mutual friend ; I have a daughter the same age as Carly.
Last year I attempted to get some information from Childrens Hospital about what constitutes “emergency” surgery for children : how is that defined? is the determination based on the opinion of one doctor, or a team? I also asked how many surgeries for children had been re-scheduled, for whatever reason (I thought the hospital would be tracking this information so that they could appeal to governments for better funding). Finally, I asked how it is possible to remove a child from a surgery wait list for anything other than a non-medical reason. I was never accusatory or rude ; I did not blame anyone for the situation. After numerous telephone calls and emails, I was told that none of this information would be released to me, as an ordinary citizen. I do not know if there are cancellation statistics ; I have no idea how an “emergency” is so classified. Finally I do not know what the hospital policy is for removing patients from waitlists.
Frankly, this scared me. No answers to basic questions. This is what Susan has dealt with for years….not knowing. Imagine!