Today was a big day for us. It was also #BellLetsTalk Day.
Derek and I were up at 4am for an early morning arrival, in the dark, at CAMH. It started off with an invitation to join one of the CAMH doctors, Dr. Daskalakis, for an interview with Jamie Gutfreund from CP24. We discussed rTMS (Repetitive Transcranial Magnetic Stimulation).
I then had the privilege (yes, I’m going to say it was a privilege because any audience with a person who has power is a chance to voice your thoughts) of a private meeting with Premier Doug Ford, Deputy Premier and Minister of Health Christine Elliott, and Minister of Infrastructure Monte McNaughton.
After pictures were taken, the five of us were left alone in the treatment room. Dr. Daskalakis discussed some pretty staggering statistics about mental health. He also voiced his concern about the notion that if 350,000 people were waiting – and not receiving – cancer treatment, there would be an uproar. There are 350,000 people waiting for mental health treatment.
Dr. Daskalakis talked about how their extensive research on rTMS has proven it to be a very beneficial treatment. That 1/3 of mentally ill patients don’t respond to medication treatment. And that 50% of those treatment resistant patients would benefit from rTMS.
He made it clear how many people truly could be helped, having them return to work, participating in their families and relationships – back to life – and how much of the burden could be lifted off of our healthcare system. We need to be more proactive, not reactive.
He discussed how the treatment itself is portable – the machine can be delivered anywhere. Even to remote locations (Minister Elliott really responded to this).
He surprised them with the fact that rTMS is widely covered, available and accessible in the United States (thank you in part to the research done BY CAMH) and that it’s also covered in Quebec and Saskatchewan. The only way you can access rTMS treatment in Ontario is if you’re part of a study, or have the funds to receive treatments in a private clinic.
He talked about the promising use of rTMS for youth – and how if we can treat them early enough, we might be able to stop the advancement of the illness, and possibly stop the progression of suicidal thoughts. Read a very interesting article about it here.
He revealed that new research is showing incredible promise with rTMS theta burst stimulation. This was the study I was/am involved in. The original rTMS treatment that has been around for about 20 years is a 40 minute treatment, the theta burst treatment is delivered in only three minutes.
I was able to share my own perspective of the treatment. How I’ve searched for more than 20 years to find something that worked. Something that gave me my life – and my purpose – back.
I told them that medications never worked for me. That ECT (electroconvulsive shock therapy) worked very well, but the memory loss and side effects were significant and catastrophic. I told them I’d do it again if I had to.
I told them that I agreed to participate in the study for this ‘new’ rTMS theta burst stimulation treatment because I was hoping that there was another answer for me. I said this treatment was my answer. I said I felt grateful to live ‘close’ to such an incredible research and teaching hospital.
I told them that every 7-8 months, I drive 3 hours a day, every day, for six weeks to receive this 3-minute treatment. They were shocked, but they aren’t blind to the issues of accessible treatment.
I told them that when I received ECT, I had to stop my life (and the life of those who helped me) to manage and recover from it. I had to organize rides there and back, had to be there for several hours each time I had a treatment, for the doctors and nurses to make sure I reacted fine to both the seizure and the anaesthetic I received. Then recover for days, no weeks, after.
It told them how incredibly cost saving it would be to be able to treat a new patient every few minutes. That these patients could walk in and walk out on their own. That they could even potentially do at-home treatments to extend remission time – or possibly even eliminate their illness.
I told them that with such an ‘affordable’ and portable treatment, rolling it out across our province, or even our country, would literally be gifting life back to our families, friends and neighbours who are struggling with their mental health.
Let me make this clear, this ground breaking treatment, that’s helping MANY people with little to no side effects, that is portable, cost effective and can easily be rolled out, that can treat many patients each and every hour IS NOT COVERED BY OHIP. Yet.
I had a private conversation with Premier Ford after he handed me his card and told me to ‘call him if I ever needed anything’. I told him that I get messages from people all the time who are struggling. Struggling with wait times. Struggling with communication between their specialists, struggling with advocating for their loved ones. Struggling with finding a treatment that works, while trying to maintain hope, their jobs, their families, their lives. Struggling with finding appropriate treatment for their teen. Struggling with the loss of their child – who died by suicide.
I told them that CAMH, and the rTMS team, saved my life. Multiple times.
We then went to a media release – where Premier Ford, Minister Elliott and Minister McNaughton announced a substantial investment in mental health – the investment of $633Million over the next 6 years for mental health in Ontario. More here.
For me, today felt very focused on my own struggles and treatment, but I hope I was able to deliver the message that we need better mental health care, better treatment options that are accessible for everyone, and better communication between patients and doctors.
Also, after a brilliant lunch meeting with two incredible people, Zach is ‘back on track’… stay tuned! We’re exhausted. Good night!