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| 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! |
The
last four years have been unbearably difficult emotionally, physically and
financially for our family as we tried to get assistance through our inadequate
and ineffective health system for our daughter, Samantha, who is 17 and has an Eating
Disorder. We live in London, Ontario.
We were told by a hospital social worker that Samantha was just a bad egg and we should consider sacrificing one to save two (meaning let her go for the sake of our other children).
After our daughter’s diagnosis, treatment took months to start and included trips to emergency and many hospital admissions; all complicated by uneducated "professionals."
Samantha almost died due to refeeding syndrome when the hospital neglected to call the on call doctor in August of 2012. Once when our daughter was in hospital, on complete bed rest due to a significant heart rate gap a patient advocate came and told her she did not have to accept treatment; she was 14 years old!
Weeks later, when she was deemed medically unstable, we were advised she needed to go to Regional Mental Health. We asked for a tour of the facility, and were denied. We were told, take it or leave it or she would be discharged. Samantha lost the weight she gained prior to moving out to Regional from children’s hospital because there was no eating disorder specialty support at Regional.
At her next hospital admission in Feb. ‘13 we were told Samantha was borderline personality disorder by the male nurse on staff and was just manipulative. Samantha graduated from Dialectical Behavior Therapy (DBT), without completion because of her readmission. For her DBT contact she was responsible for asking for help with her problems. The problem with Eating Disorders is that you don’t realize you need help! (This lack of insight is called anosognosia and is a symptom of eating disorders).
We were given an ultimatum by the hospital that we could not use outside resources to augment Samantha’s declining health. She was receiving 1hour/90 mins. every week/two. We hired a private social worker and dietitian to work with the family when Samantha was discharged from treatment against our wishes. We were paying over $500 a week out of pocket to augment the hospital’s lack of service. London Health Sciences Centre frequently refused to deal with us directly because Samantha was the patient. This included at the time of her discharge from inpatient, which was against our wishes. In fact the doctor refused to communicate with us until we refused to pick Samantha up from hospital.
In March 2013 her doctor was unwilling to discuss options because we were told Samantha was medically stable and the bed was needed for another patient who had been waiting several weeks. Samantha was also discharged from day treatment against our wishes and denied appointments with the on site dietitian because the hospital deemed it unnecessary.
May 2013 the hospital social worker and her Child and Youth Worker recommended we put Samantha in a group home and/or turn her over to the Children’s Aid Society. Community Services Coordination Network which administers group homes in London wrote, “Samantha was not an ideal candidate because of other high risk activities at the group home and there would be no Eating Disorders support.”June 2013, I called the police to our house (eating disorders can cause very scary behavior and psychiatric holds are often required). The officer told me our daughter was spoilt. I was called by the hospital at 4 a.m. to get her. I refused to pick her up because I had two younger children at home and my husband was traveling overseas. The hospital sent her home in a taxi at 8 a.m.
When Samantha went to Southlake in Newmarket we attempted to get a travel stipend from the government. This was denied. We paid out of pocket to stay in Newmarket for 7 ½ months and commuted back to London on weekends. My husband left work at noon and drove to Newmarket every Wednesday to attend group family therapy, and we made arrangements for our two younger children to stay at home. I don’t know how we managed. The cost was staggering.
Samantha relapsed after leaving Southlake and is now in the residential treatment facility in Whitby where she belongs. We are seeing progress. It is a wonderful facility.
The social worker may think that giving up on your child is the right thing to do; it is not. With early diagnosis and prompt, evidence-based, appropriate-level-of-care treatment this would not be our story--our daughter deserves better, our family deserves better, Canada deserves better.
We were told by a hospital social worker that Samantha was just a bad egg and we should consider sacrificing one to save two (meaning let her go for the sake of our other children).
After our daughter’s diagnosis, treatment took months to start and included trips to emergency and many hospital admissions; all complicated by uneducated "professionals."
Samantha almost died due to refeeding syndrome when the hospital neglected to call the on call doctor in August of 2012. Once when our daughter was in hospital, on complete bed rest due to a significant heart rate gap a patient advocate came and told her she did not have to accept treatment; she was 14 years old!
Weeks later, when she was deemed medically unstable, we were advised she needed to go to Regional Mental Health. We asked for a tour of the facility, and were denied. We were told, take it or leave it or she would be discharged. Samantha lost the weight she gained prior to moving out to Regional from children’s hospital because there was no eating disorder specialty support at Regional.
At her next hospital admission in Feb. ‘13 we were told Samantha was borderline personality disorder by the male nurse on staff and was just manipulative. Samantha graduated from Dialectical Behavior Therapy (DBT), without completion because of her readmission. For her DBT contact she was responsible for asking for help with her problems. The problem with Eating Disorders is that you don’t realize you need help! (This lack of insight is called anosognosia and is a symptom of eating disorders).
We were given an ultimatum by the hospital that we could not use outside resources to augment Samantha’s declining health. She was receiving 1hour/90 mins. every week/two. We hired a private social worker and dietitian to work with the family when Samantha was discharged from treatment against our wishes. We were paying over $500 a week out of pocket to augment the hospital’s lack of service. London Health Sciences Centre frequently refused to deal with us directly because Samantha was the patient. This included at the time of her discharge from inpatient, which was against our wishes. In fact the doctor refused to communicate with us until we refused to pick Samantha up from hospital.
In March 2013 her doctor was unwilling to discuss options because we were told Samantha was medically stable and the bed was needed for another patient who had been waiting several weeks. Samantha was also discharged from day treatment against our wishes and denied appointments with the on site dietitian because the hospital deemed it unnecessary.
May 2013 the hospital social worker and her Child and Youth Worker recommended we put Samantha in a group home and/or turn her over to the Children’s Aid Society. Community Services Coordination Network which administers group homes in London wrote, “Samantha was not an ideal candidate because of other high risk activities at the group home and there would be no Eating Disorders support.”June 2013, I called the police to our house (eating disorders can cause very scary behavior and psychiatric holds are often required). The officer told me our daughter was spoilt. I was called by the hospital at 4 a.m. to get her. I refused to pick her up because I had two younger children at home and my husband was traveling overseas. The hospital sent her home in a taxi at 8 a.m.
When Samantha went to Southlake in Newmarket we attempted to get a travel stipend from the government. This was denied. We paid out of pocket to stay in Newmarket for 7 ½ months and commuted back to London on weekends. My husband left work at noon and drove to Newmarket every Wednesday to attend group family therapy, and we made arrangements for our two younger children to stay at home. I don’t know how we managed. The cost was staggering.
Samantha relapsed after leaving Southlake and is now in the residential treatment facility in Whitby where she belongs. We are seeing progress. It is a wonderful facility.
The social worker may think that giving up on your child is the right thing to do; it is not. With early diagnosis and prompt, evidence-based, appropriate-level-of-care treatment this would not be our story--our daughter deserves better, our family deserves better, Canada deserves better.
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