Redacted: to edit or revise from an original form.
I received the long-awaited records from the Child and Youth Mental Health Services this week. After one denied request and appeal and a new request I was actually quite shocked to receive the notice that a package containing his records was ready for me to pick up. After an hour on the phone and speaking to 4 different offices to set up the appointment to pick up the records I headed off to collect what I had so desperately pushed to get released.
I wasn’t prepared for the emotions that would come over me when I held the package of papers. I cried and sat in the car, knowing that these papers told the story of the last short months of Willie’s life. That the documents in my hands were a recounting of the panic and the frustration that we all felt during that time, not the least of which was Willie himself. I already knew, intimately and minutely, all of the details of his care so I’m not sure what I was hoping to uncover by acquiring these records. No matter… I needed them to be able to put to rest my mind.
I let them sit for 2 days; not ready to open those pages and see again the pain and the struggle that my son and our family went through. Finally though, last night I cut open the plastic straps and slipped off the cardboard covers and started to read through.
I glanced over the cover page, thinking it was just a standard form letter of notice that my request had been fulfilled but as I skimmed I noticed the reference to the fact that Willie’s records had been edited to reflect what I was allowed to see based on the Freedom of Information Act’s section pertaining to his right to personal privacy… to explain my response as shocked is an understatement.
This is the same agency that refused to give me his records because, as he is deceased, I can’t be acting on his behalf in requesting his records. However, they now all of a sudden are acting on his behalf in redacting records for his personal privacy concerns?! The irony is like a slap in the face. This is, in my opinion, nothing short of them trying to cover themselves from any potential liability in his care and treatment. The Child and Youth Mental Health Services can simply refuse to release the documents. If there’s nothing to hide or be concerned about, why remove pages and alter sentences. There are actually sentences with words whited out, so they make no sense.
This speaks to the same mentality of the Psychiatrist who was in charge of Willie’s care at the Adolescent Psychiatric Unit in Surrey Memorial Hospital. When I presented them with Willie’s journals that showcased far different and disturbing symptoms than what he was admitting to they advised that they would only see them if he permitted –so as to not impinge on his privacy. The day before, Willie had directed me exactly where to look in his drawer to get him more clothes for his stay; specifically mentioning the drawer and that I should go right to the bottom of the drawer – which is of course where the journals were. He knew I would find them and I believe he wanted me to find them. That he wasn’t able to be honest through his mental illness but that his journals spoke what he couldn’t. Needless to say, Willie refused to let them be seen by the doctors and they were given back to me and I took them home. I had read them through and knew that Willie was far sicker than he was letting on. During his stay I was repeatedly told that I couldn’t reference the journals or what was in them; that his care would only be based on their conversations with us and him. The long and short of it is that his care was tailored to a moody teenager who wasn’t getting along with his Mother – not the pre-psychosis symptoms that were rampant in his journals and drawings.
Back to the documents I received… I look at them and see yet another example of the frustration that families navigating the mental health system have to face. The futility I feel is massive and I wonder if change can be enacted on any level. I have a number of friends and family who tell me to let it go and to just stop “tormenting” myself with this but I can’t. Nothing will help Willie anymore and that’s just the way it is. But there will always be another youth and more families that have to face the same struggle for care and answers.