Reflecting in my hotel room for a little bit after a lovely native healing amythest biomat session with a beautiful native healer, while we break before dinner here at the Child and Youth Mental Health and Substance Use Congress. It’s been a long day of learning, and I may have taken a couple of opportunities to stir the pot a little bit – that is afterall why I sit on the South Delta Mental Health Local Action team isn’t it…
I am filled with gratitude that I’ve learned of some system changes and progress today that tell me that our mental health systems in BC are better than they were when I scrambled through them as a youth. I am humbled to hear that there are now some systems in place to assist in the sharing of information between a youth’s mental health team, so that different care groups can begin to work together, rather than apart, for the benefit of a child’s mental health.
One question that was raised was if the file is being shared between the professional team members working together for this child, is the file also then shared with the family for their own support and understanding. This is not the case due to the issues around is the file belonging to the parent or to the youth. If the youth is over 16 and does not want the file to go to said parents, is that the child’s right or the parent’s right? The presenter went on to argue that although the file is not given to the youth or parent, they do own it and can go through the freedom of information act to recieve it.
Although I wish there was a simpler solution to this barrier, I do understand it. So MY question was, Is anybody informing the youth or parent that they have the right to request said file for their own personal use? The answer of course, was no. I only learned recently that I had a right to my medical files, most youth and parents that I have spoken to are not aware that this is within their rights or an appropriate action to take, if desired.
So although I am humbled and grateful for the progress that has been made, today left me with the following main questions:
– Why, are parents and youth, not informed that it is within their rights to request the child’s medical file when dealing with mental health crisis?
– Who and how, do we hold doctors, psychiatrists, care workers, etc, accountable when a situation is not handled professionally or with care, or when their reports do not accurately describe the patient, or when they drop the ball over and over again leaving a mentally ill youth without care or support, or when they don’t understand the illness so they unnecessarily blame physical ailments and disease on mental illness? Or to be frank, when they are flat out ignorant and narcissistic? Lets be honest, that happens.
– Why are doctors not being taught to PROPERLY explore other physical health issues such as nutrient deficiencies, lifestyle choices, or infectious disease such as PANDAS, Lyme, etc, before jumping to anxiety, depression, bipolar, panic disorder, schizophrenia, psychosis, autism, ADD, ADHD, and other mental health disorders?
– Why when a parent or youth tries to advocate for themselves or their child, wanting to explore options such as infectious disease, are they sent by their doctor for a psych eval instead?
While at this conference I helped a person with a history of serious mental illness, drug abuse and homelessness, who is now an incredible advocate, learn that he/she has lyme disease. I got said person in contact with a doctor who has confirmed this. This individual’s tick bite happened as a child before any of their mental illnesses began. When the bite happened a bullseye rash appeared, the doctors ran tests and told the family that the child was fine. What they did not tell the family is that not everyone with Lyme disease gets the bullseye rash, but everyone with the bullseye rash gets Lyme. Years later this individual has overcome severe mental illness, drug abuse and homelessness as results of said mental illness, along with severe joint issues, rheumatoid arthritis, surgeries for said joints, pain issues and more… Could any of this of been prevented if our doctors were better educated on the subject?
I have no idea when I was bit. I don’t know if I got it from a tick or from a mosquito as west nile was also found in my blood. I know for sure that I’ve been sick for 2 years, but I show some physical signs of Lyme disease going back to before any of my mental health issues began. Is this a coincidence? Or could my story of also been drastically changed if doctors would look for these things before jumping to mental health? I do know for a fact that my story would have been changed if they’d thought to check my iron and thyroid levels…
I am so grateful that we have come this far, that people from different groups have begun working together for a better system and better child and youth mental health, but at the same time my heart aches for how far we still have to go…