Why Canadian public healthcare fails Lyme patients and why they seek treatment elsewhere
Patients articulate their experiences and recommend solutions.
This year marks the 20th anniversary of the Canadian Lyme Disease Foundation. For the past two decades, CanLyme has supported Canadian Lyme disease research in a variety of different ways; supporting and promoting researchers and their research labs, providing financial assistance for laboratory equipment and directly funding Canadian research initiatives.
As we reflect on the past twenty years, CanLyme would like to highlight some of the research that’s been done by Canadian researchers to advance our understanding of ticks, Lyme disease and other tick-borne infections.
In today’s post, we shine the spotlight on research by Boudreau, Lloyd and Gould, describing the experiences of Canadians who sought treatment outside the conventional Canadian healthcare system (CCHS) after failing to receive the diagnosis and treatment they needed in Canada.1
The authors point out that although little is known about the use of alternative healthcare by Lyme disease patients, it’s well documented that many Canadians seek healthcare outside the Canadian healthcare system when they’re unable to access the care they need. In order to better understand this problem from a Lyme disease perspective, the authors interviewed Lyme patients who sought healthcare outside the CCHS.
Participants revealed many of the reasons they sought healthcare outside the conventional system. These ranged from difficulty receiving adequate diagnosis and treatment, to hearing positive endorsements of alternatives to conventional care. The interviews revealed some of the challenges that participants faced during encounters within the Canadian healthcare system, including feelings of being dismissed or belittled.
“Despite getting a clinical diagnosis of late-stage Lyme disease from my doctor, no antibiotic treatment was offered to me here in [Canada] (because of [my] negative Canadian ELISA.)”
Research participant
“My doctor has rolled his eyes at me for saying I suspect I have Lyme. He was scared to death to deal with [Lyme], and he knows nothing about it.”
Research participant
“The last straw was when my last neurologist told me there was nothing more that could be done for me and that I would have this unexplained pain for the rest of my life.”
Research participant
Some of the other issues revealed through the interviews were participants’ concerns about revealing the use of alternative healthcare to their family physicians, and concerns about repercussions their physicians might encounter for treating Lyme disease.
“When asked how care for Lyme disease could be improved within Canada, there was a clear consensus. Respondents wanted (a) an effective treatment protocol (ie, long-term antibiotic treatment) along with supplements and lifestyle change recommendations; (b) an effective diagnostic test, as well as clinical diagnoses based on symptoms; (c) more knowledgeable physicians; (d) prescribing rights for naturopaths across the country; (e) financial coverage for alternative treatments by the Canadian health-care system; and (f) increased respect toward patients with Lyme disease, through the acknowledgment of the existence of the disease and the suffering of patients.”
Boudreau, et al.
Understanding the experiences of Lyme patients is fundamental in developing healthcare policies that are relevant to the needs of those receiving that healthcare. This research provides insights into the experiences of Canadian Lyme patients, along with clear recommendations from those patients regarding some of the changes that would improve healthcare for Canadian Lyme patients.