Sent Nov 23rd.
Dear Minister Duncan:
In 2014, I died; my heart suddenly stopped, and stayed stopped through prompt CPR provided by police, until EMS arrived by bicycle and mostly revived me with an AED. After recovering from my mild case of sudden cardiac death, I was advised by my doctors to obtain a genetic test to learn who else in my family is at risk. The wait for such an appointment in Saskatchewan, I learned, is over 2 years. I’m presently on a wait-list to be put on a list of people waiting for their appointment time. My siblings and others wait for their own tests, because mine must be completed first. It’s just a matter of life and death, no hurry, right?
I made an appointment with my family doctor again, to have him make another referral to a cardiologist in Winnipeg whom my uncle there said would be able to get the testing done more quickly. I tried phoning the cardiologist’s office in Winnipeg during the Summer, but they said they couldn’t speak with me without a referral from my family doctor. When I had the referral I tried asking if the doctor could order the genetic test, and they said they couldn’t say until I saw the doctor. I recently went to that appointment after waiting months. It’s a 6 hour drive, one way. He couldn’t directly order the testing, so referred me to another Winnipeg doctor who can mail me an appointment time to drive back to Winnipeg to interview me and draw blood at a lab. They will then likely send some of my genetic data to the Mayo Clinic in the United States where my medical information will be obtained and stored under the Patriot Act there.
How could this process be improved?
Early in 2014 I saw my family doctor for a check-up, and he advised me I should be seeing my cardiologist once a year. I’d never been advised to do that before, not since my heart defect was discovered in my mid-20s. I first learned of my heart condition in 2006, but there was probably no testing for the genes that cause it, back then. My cardiologist at that time said not to worry about the condition, and try to remain stress-free about it. That approach resulted in my (temporary) death.
In the Summer I asked my family doctor to refer me to a different cardiologist in Regina. I’ve yet to hear from that Regina cardiologist’s office for an appointment I was supposed to have by July.
Clearly improvements could be made to our health system so that I could get better care?
Things like Tele-health offered to connect me with doctors in far away cities. Another geneticist hired in Saskatchewan to reduce the ridiculous 2 year+ wait time. I hope you use my case to design a better system and implement it.
P.S. I’ve HCM, like the writer of this article about kids dying in sports.