Canada: Four Beds are Simply Not Enough!

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Canada: Four Beds are Simply Not Enough!

I had to give up my apartment, find shelter for my cat, and leave the little professional and social supports I had to in order to receive treatment hours away from my home, my life.

Having struggled with both severe anxiety and an eating disorder for over half my life; I don't know how I found the courage to embark on such a journey to seek treatment.

After waiting six months to even hear if the hospital got my referral, I was directed to attend a weekly group meeting in order to prepare for the intensive three stage eating disorder program. This meant I would have had to commute four hours by public transit or have my father drive me part way. It was further recommended that I relocate to the city so I would to be able to take part in the outpatient portion of the program which was to be completed after two months of inpatient treatment.

A month before my admission I packed up my apartment, left my 15-year old cat with a friend, and with a mixture of great anticipation and anxiety, left the home I had lived in for seven years. I was leaving the security of the comfortable turmoil I was accustomed to living, for the possibility of a new positive and productive life.

Being ill for so many years I have never really been able to live a “normal life” finish school or hold down a full time job, thus having to be supported by living off of disability. 

The financial burden associated with the treatment program was high. I had to pay for housing and storage of my possessions during the inpatient portion of the program and so I would have a place to live during the intensive day treatment portion. This was also in addition to the costs of transportation and the additional food costs that were mandatory for the program.

The inpatient program was located inside the psychiatric unit and had only four beds. Space is very limited. Outpatients followed the same program but were able to leave after dinner. In total the group of approximately 14 patients and two staff were literally squished around two big tables at meal times. It was difficult to eat without bumping elbows. Group rooms were located outside of the unit so we would be paraded out into the mental health outpatient waiting room and down the hall several times a day.

I am very grateful to have had the opportunity; however, due to the narrow scope of the treatment modality, other comorbid health concerns which could impact the success of treatment were not adequately managed . Many people with eating disorders have other comorbid mental health conditions, (e.g.: anxiety, depression, OCD, etc.…) myself included. 

If programs focus solely on eating disorder treatment and fail to properly support the person as a whole, then this leads to greater chance of relapse. Unfortunately, this is exactly what happened to me, I started to slip even before I left the program.

Three years later I am again looking for treatment and am not pleased with the very limited options I have in Ontario.

It would be beneficial to have residential treatment in Ontario that is publicly funded. A place conducive to repairing the holistic health of each individual person. Just because we are diagnosed with the same disorder does not mean we are carbon copies of each other.

This disorder affects a wide range of Canadians. There is not enough help in our communities. Currently, people are forced to put their lives on hold in order to receive treatment, waiting until they are deemed sick enough, or not getting any help at all. We need to stop ignoring eating disorders, closing our eyes, and letting someone else handle it.

These are people who have so much to give the world but are being held captive by the most powerful of forces--their own brains.

Canada: Raise your VOICE . . . TODAY!

This is a fantastic opportunity to ensure eating disorders, the deadliest of all mental illnesses, will be recognized in this action plan.

http://www.mentalhealthcommission.ca/English/mental-health-matters

Suggested "asks" from our partners at the National Initiative for Eating Disorders (NIED):


Canada needs a National Strategy for Eating Disorders as there is no statistical tracking of Eating Disorder sufferers.

a) Canada does not know the numbers of sufferers
b) How long they are waiting for treatment
c) Who is getting the treatment
d) How long are the waiting lists 
e) Diagnostic billing codes need to be better defined

· A national research strategy is required to identify effective 
ways to scale up the implementation and dissemination of best practices in the treatment and prevention of eating disorders 
across the country. 

· Guidelines are required to establish acceptable levels of service, wait times, and training requirements for service providers. 

· Infrastructure is required to build capacity for the delivery of 
timely and age appropriate evidence-based treatment and support services for eating disorders spanning prevention, specialized outpatient treatment, intensive treatment, and residential care services.

Canada: Recovery Takes Longer than A Few Weeks

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Canada: Recovery Takes Longer than A Few Weeks

I have been the stepmother of a young adolescent since July of 2011. She was seventeen when her father and I married, and had already been suffering from bulimia for two years; she would regularly binge eat and throw up afterwards. Sometimes as many as six times a day. Initially, I think she started binging and purging to stay thin.

In early July of 2013, she had an appointment for an evaluation at CAMH. When we arrived at 11am she had both drugs and alcohol in her system and were told that the clinic would not offer any eating disorder treatment because of this. We were told that she must be drug and alcohol free before any treatment could be started. At the time, we felt clueless as to how to get her to adhere to his condition.

Just a couple of days after this, her father called 911 as she told him that she couldn’t remember how many prescription pills she had taken. She was admitted under form T1.   She was then admitted to the alcohol detox program at CAMH which she attended for four days and was released.

Between July and September that year,  she went to live with her Mom, who attempted to control her eating disorder by placing her own bed in front of the refrigerator. She did this so that she could guard it overnight, in order to stop her daughter from binge eating and purging.

Around the middle of September, she was accepted to live at the Ingles House with five other young woman. She continued to be drug and alcohol free at this time, but was receiving no support regarding her eating disorder.

Just a month later, in October, she was asked to leave the Ingles House due to her disruptive eating disorder behaviours.

In November, she came back to live with us at our house and stayed until late January of 2014. Her eating disorder seemed  worse than ever. Finally, in February 2014, she was placed in an inpatient program at TGH. She started to show great improvement, but it seemed like too little too late; we had waited such a long time for her to finally receive the help she needed.

At the end of February she was moved on to the outpatient five-day program. She did fairly well, except for some “slip ups”. We tried to get some information from the program at TGH to help with her recovery process as her caretakers, but none of the administrators or doctors responded. The only source of direct information we were able to get  was at Sheena’s place and from the internet. She then moved on to an outpatient two-day program. in March, and in April she was dismissed from this program.

After the outpatient treatment stopped, her eating disorder worsened again. We paid for some private therapy sessions, but she showed no improvement at all.  We finally resorted to removing all of the food from the house. In October she moved out to  share an apartment with a girl-friend.

In February, 2015, she admitted to her father that her eating disorder was totally out of control and that she was afraid for her life. She was dangerously thin. In an attempt to try and help her, he went to TGH to find out if she could again be admitted into the eating disorder program. Only because of his efforts, was she evaluated on in late February and started on a three week, five-days-a-week outpatient program at TGH at the beginning of March. 

The question remains: What will happen after the three weeks are up?

It deeply concerns me that a person, and especially a young adolescent with a life-threatening eating disorder, is not able to understand the protocol to be followed at CAMH. There is no communication at all to the caretaker or parent unless written consent is given from the patient on the hospital form by the doctor in the presence of the caretaker. This system creates a dangerous situation for any person suffering from an eating disorder as it meant that it is hard for them to continue treatment once they are dismissed from the inpatient facility.

I question why there are there so few inpatient beds for people with eating disorders available? The inpatient program really made a difference, but because there was never a follow up treatment or involvement plan for the caretakers, it had little effect in the end.

Canada: Where Treatment Protocols Don't Make Fiscal Sense

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Canada: Where Treatment Protocols Don't Even Make Fiscal Sense

I was diagnosed at 16 years old by a psychiatrist I was referred to at a hospital in Ottawa. The meeting lasted no longer than 12 minutes and I was out the door unsure of what step to take next. I had to tell my family doctor the diagnosis myself and explain what little I knew since the psychiatrist did not follow up or contact my GP.

Then on began my battle with the system and multiple eating disorders. As things got worse and my parents were kept in the dark I stopped going to school and demanded to be homeschooled. Meanwhile I slept all day, rarely ate dinner and exercised all day. I had been waiting for a referral to CHEO for 8 months now and I was to be turning 18 five months after my set assessment date. That would be enough time to tackle the disorder right? Wrong because I would not get that chance.

My family and I arrived at CHEO and were told my appointment had been canceled but we had no idea. I was told that the doctors felt that I had more of a mood disorder and that they would not be helping me. Devastated, embarrassed and confused I strived to become more sick. To fit the mold in order to receive proper care.

Things only got worse and my mental and physical health continued to deteriorate and I was barely getting through the average day of grade 12. My Mom ended up contacting Dr. Spettigue from CHEO and explained to her the neglect that went on with my so called referral. By the time I finally met Dr. Spettigue I was ambivalent towards life and recovery. I did not feel I deserved or need recovery.

Thankfully she was able to see and understand that I needed intensive care immediately. Unfortunately for me the program at CHEO was full and to no surprise I had no interest in going into a program that did not think I had an eating disorder. So Avalon Hills in Logan Utah was brought up and she made the referral with my psychologist to have me leave for residential treatment as soon as possible.

It only took a month or so and OHIP came back confirming they would pay for my treatment. I was overwhelmed, excited and unsure. I dove into the program and was there from November 19th 2012 until January 30th 2013. I discharged 2 days before my 18th birthday. I had an option to continue treatment at the adult home or go home and finish grade 12 on time. So of course I was ready to get the heck out. Too bad for me because I came home to a new and final semester of high school and I had no support outside of my home from processionals and I relapsed 2 1/2 months later and wound back at the same state I was before treatment.

There are two ways to look at this. If I had of stayed in treatment for a few more months I might of been in a better state and if I didn't and came home to the system with a proper team then maybe I wouldn't be 20 years old and still dealing with all of this. What would have been best is if I could have done recovery at home so my tradition was not so tough.

I live with a lot of regret and guilt but is it my fault that I have not received the care I need for the correct amount of time? When I left treatment I was still into my disorder but was high on the fact that I had freedom as an 18 year old. If I could go back to that day and did things differently I would.

I hope that our system will finally offer better long-term care here and that when treatment is through recovery isn't. I want men and women to have a different path than me.

Canada: Treatment Should Not Require Luck Part 2

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Canada: Treatment Should Not Require Luck Part 2

I am writing this in support of the “What’s your story?” campaign put forth by the National Initiative on Eating Disorders.  As a survivor of Anorexia Nervosa, I support the mission put forth by NIED to educate the general public on the severity of living with an eating disorder, and the lack of resources supporting those who do.

 My eating disorder has been a life-long journey.  Although it only took two years for the physical symptoms to ruin my life, I lived 26 years believing absolutely nothing of myself.  The official diagnosis of my eating disorder was Anorexia Nervosa – Not Otherwise Specified, meaning there were multiple symptoms to my eating disorder (purging through self-induced vomiting, purging through exercise, no food intake, and laxatives).  The effects were almost immediate, and before I knew it, my health quickly started to fail me.  Not only were the numbers of my heart rate, body weight and BMI extremely low (and scary), but emotionally I felt unstable, numb, experienced loss of memory, fatigue, guilt, shame for body, and the list goes on.  As much as I knew things weren’t right in my life, the eating disorder tricked me into believing that gaining weight was more scary then how I was living my life at that moment.  I am thankful every day to have such supportive friends, and am amazing family who cared enough about me to get me the help I needed, even when I was adamant I had everything under control

My journey to recovery started at the Kingston General Hospital in Kingston, ON in July of 2012.  My first assessment at KGH was an evaluation with the nurse practitioner of the eating disorder program as well as the head psychiatrist.  Their first recommendation for me was to be admitted into an inpatient program in a hospital.  Unfortunately for those struggling with eating disorders in Ontario, there are only two hospitals with such a program, Ottawa General Hospital and Toronto General Hospital.  I was told that the wait list was two years long, but until then I could come once a week to the out-patient program at KGH.  Considering I thought the nurse practitioner and psychologist were “crazy” for wanting to admit me, I reluctantly began the out-patient program.  After approximately two months, I stopped attending the program as I found the environment to be too competitive and knew my symptoms were getting worse because of this.

 In the meantime, my parents, who were scared beyond belief, paid out of their pocket for me to see a private psychologist at home in Toronto who specialized in eating disorders.  I saw this woman twice a week for approximately one month.  I appreciated this woman as I could be completely honest with her about everything I was feeling, but felt an immense amount of guilt.  My parents were paying a fortune for this service, and I didn’t know how/believe I could get over this eating disorder.  As much as I loved going to these sessions and seeing this woman, and as much as I wanted to get better for my parents who were so supportive, I knew there was no one “forcing” me to eat, and I could not be this firm and disciplined with myself.  I still felt extremely trapped and consumed by this disease.

It was in October of 2012, approximately three months after being referred by the psychiatrist at Kingston General Hospital, did I get a call to for an assessment with Dr. Bissada of the eating disorder program at the Ottawa General Hospital in Ottawa, ON.  At the end of my assessment it was clear to Dr. Bissada that I needed to be admitted to the inpatient program, and as soon as possible.  The fear of my health failing me before I could get a bed in the hospital was a reality, one which scared my family to death.  I started to make weekly trips to Ottawa once a week for the in-patient readiness program.  There were approximately six other individuals who came to this programme each week, all of whom appeared to be in the same health conditions as myself.  More scary, all of whom who were also in complete denial that anything was wrong. 

Two more months went by, and in December of 2012 I was admitted into the inpatient program at OGH.  I will never forget the day my life changed, and for the very best way it could.  Making the choice to be admitted was the scariest decision I’ve ever made, but also the most important decision, as this program literally saved my life.  There are only six beds in this program, and as I learned more and more, those beds are reserved for only the sickest of the sick.  This is not something I am proud of, but something that I thank God for that I was able to get one of those beds.  Without the help of OGH and the wonderful doctors and nurses, I would not be able to share my story with you today. 

It saddens me that TOO many people out there, who struggle with the same eating disordered thoughts that I once did, do not have this opportunity to save their own lives.  Those living with eating disorders often do so in shame and with guilt as the famous lines, “just eat” are thrown at us as our only solution.  If we could “just eat”, then Anorexia Nervosa would not be a problem.  Unfortunately, the general public, anyone who hasn’t lived with an eating disorder, does not fully understand the experience of what it is to do so.  I am blessed with a family who tried so hard to support me, and to save my life, even if they had no idea where to begin.  Unfortunately, not every family is as supportive as mine, and there are many individuals who struggle with this disease alone.  Resources need to be created, or allocated to not only those who are struggling, but also for their families and friends who are desperately trying to know how they can help.

I recognize this post exceeds the 500 word limit, but I did not want to delete any of my story to save space.  The best part, which I have yet to share, is that thanks to OGH and the hard work I put into the program, I can proudly say I am two years into my own recovery from Anorexia Nervosa.  It is not easy, and every day is work, but I have learned that I am, and my life is, totally worth it.  I pray for the day that all those who struggle can learn to accept this truth as well.

Canada: Treatment Should Not Require Luck Part 1

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Canada: Treatment Should Not Require Luck Part 1

I am writing this account in response to the NIED's effort to secure funding for adequate treatment and support of patients with Eating Disorders through our healthcare system.

In the summer of 2012 our daughter was diagnosed with Anorexia Nervosa - not otherwise specified....she was 26 years old. We were told by professionals that there was good news and bad news. The good news was, they felt our daughter would probably respond to an inpatient treatment program - the bad news was, there are only 18 beds in Ontario and the wait list is 2 years long.... our daughter would not survive the wait. We immediately starting researching other facilities both in Ontario and the United States but were refused help as my daughter's BMI was too low; meaning she needed urgent medical care which private facilities could not give her.  Our daughter's fate was sealed - she was going to die because of underfunding of eating disorder treatment programs in our hospitals.

Our story however, does have a very happy ending. The inpatient eating disorder program at the Ottawa Hospital runs on the premise that if patients are not "buying into" the way the program is run, they are asked to leave.  By some miracle, my daughter was admitted Dec. 6th 2012* and has been recovering since March of that year. Through a lot of hard work on my daughter's part (of which we are very proud) and the fantastic care, training and medical attention she received at the Ottawa Hospital, she is healthy.....and alive! Her days are not without struggles, but because of the exceptional treatment she received, she has "tools" that help her work through them. Before admission to the hospital, my daughter was seeing a therapist who specialized in eating disorders.  I asked her a few weeks ago, "If you were not admitted to the hospital, but instead kept seeing the therapist, would you have recovered?" Without hesitation her answer was "No.  The therapist didn't make me eat like I had to in the hospital!".

My daughter was saved - it is tragic that everyone with an ED does not have the same opportunity she did.

*I have thoughts on why my daughter was admitted so quickly, but space prevents me from listing them.

Canada: The Very Brink of Death

Eating Disorders are brain-based, biological illnesses with a strong genetic component. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Helpless

My name is Tara & I live with my husband and two daughters Hannah (16) & Quinn (11) on Vancouver Island, BC.  Our oldest daughter was diagnosed with anorexia in November 2012 at the age of 14.

Prior to diagnosis our family led a “normal” life, we worked, took our girls to extracurricular events, socialized with friends, volunteering at school functions etc.  When we had days off together you would find us up the mountain or a beach spending time together, enjoying life.

November 19, 2012 a simple call from the school reporting Hannah had missed a class created a string of events that blew Hannah's secret open.  Quickly I was seeing clearly the answers to all the nagging question that I had been asking myself.  Hannah had an eating disorder.  Life as we knew it was about to take a drastic change.

In less than a week we had seen our family doctor and agreed and diagnosed Hannah with anorexia. Her name was being referred to those who could help.

Two and a half month later, intake information appointment at MCFD only to be sent somewhere else, referrals to psychiatrist and dietician still sit on the wait lists, numerous calls to ED organizations, a private ED treatment center (we did not meet age criteria) Hannah was sicker than I ever dreamed possible.  My daughter was dying and nobody could help, we were on the wait list.

Feb 8, 2013 I looked into Hannah's eyes and saw death, our doctor saw it and told her.  I was scared, he was scared and the ED wanted to take Hannah from us. Still on the wait list at BCCH for a consultation appointment, I could not wait for help from them.  Armed with Gatorade and Boost, blankets to keep Hannah warm and our doctor’s home phone number I spent the next week at Hannah’s side, pleading with her to take a sip every few minutes. I slept with her at night so I could keep a hand on her chest so I would know immediately if she stopped breathing.  Her breathing so shallow I hardly slept for days because I thought every breath was her last.

We were finally seen at BCCH mid-March.  I had taken a leave from work to be home full time to refeed Hannah.  We as a family (and it is a full family effort) had managed to pull her out of the critical medical state she had been in.  We had her eating food and she was gaining weight.  BCCH added us to their out patient program.  We would travel back and forth to Vancouver once a week.

Eight months of outpatient treatment and they are comfortable to discharge her as a patient.  I have confidence in our family doctor and I have secured a therapist at NARSF in Nanaimo.  I hope and pray we will continue on the recovery road.

Things are okay(ish) for the next while, Hannah struggles but is stable and she likes her therapist who she sees and has returned to school.  Few months later her therapist must leave for personal reasons, there is no replacement. I now fight for somebody new; I'm stuck in a government nightmare of boundary lines.  There is nobody to see in Nanaimo & Duncan is not our catchment area.  Few months later the position at NARSF has been filled.  We hope that there is a connection between Hannah and her new therapist.

The last year has been a constant struggle to keep Hannah stronger than the Eating Disorder.  It haunts her and is gaining strength.  We continue to fight for appropriate treatment and programs. We are unable to access some programs because we live a five-minute walk north of a boundary line, she is unable to attend school because of severe anxieties, and her therapist isn't connecting.

As February 8 approaches, the day I have named “Living Day”, the day almost two years ago Hannah surrendered enough to follow my lead and take a sip of Gatorade then another and then one of Boost and lived through the day, as that day approaches I am scared. I am scared because this nightmare is not yet over, relapse is strong and two nights ago I saw ED alive and well in Hannah, she refused to eat. Today I try to make arrangements to have her put on a wait list for a program that she is not yet old enough to participate in, but maybe by the time she turns 17 her name will be at the top of the list . . . I am unable to write an end to this yet but I know what I am fighting for and I hope our families next 'Living Day' will be one to enjoy.