Saturday, April 25, 2015

Dear ICED: Dying, Waiting in Ontario

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!

Dying, Waiting in Ontario
Suze Nelson
Peterborough, Ontario, Canada

We live in Ontario, Canada, where much to our shock when my daughter was diagnosed with AN at 19, we quickly learned that our provincial health care would not cover treatment costs, unless of course she was DYING in hospital. Canada falsely prides itself on universal health care; no such healthcare exists for eating disorders. ED treatment here is 100% two-tiered – if you have funds, you can receive treatment. If not, tough luck. Your child dies.
Disgusted and enraged doesn`t begin to cover my feelings on this. We were absolutely panicked and terrified that she would not survive due to our lack of finances. 

We immediately launched a successful fundraising campaign drawing media attention and support worldwide. This allowed us to finally start the application process by getting her name on the waiting list at a well known ED treatment facility here in Ontario. Between diagnosis and admission several very scary months went by. Let me be clear - the success of our fundraising campaign campaign was the ONLY REASON SHE RECEIVED TREATMENT.  Sufferers in Ontario DIE WAITING for treatment.

My daughter completed one full 12 week inpatient program at this centre and was then discharged to live on her own, having no aftercare or followup plan in place. She relapsed soon after discharge and was readmitted for another round. Again, no aftercare or follow up upon release. One year later, a major relapse and a five month inpatient program at same centre. This time my daughter created her own supports and plan for discharge.

At no time during these three admissions over 2 years at this treatment facility was our family welcomed, educated or included in my daughter`s treatment or recovery plan, let alone informed of her medical condition. As a family we have had no DBT, no FBT but one hell of a lot of BS and WTF.  Current research demonstrates that family involvement and support is a key element to sustained recovery.

My girl is now 24, fighting for full recovery, living with best friend and her cat. 

Suze Nelson is a single mum of three strong and beautiful children and a tenacious EDucator/activist living in Peterborough, Ontario 

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