I have lived in Kamloops, B.C., for 40 great years. I worked as an X-ray technician, mostly in the operating rooms, served my fellow workers as their union steward, and spent the rest of the time being a farm girl, competing with my horses in jumping and dressage events, enjoying life with my partner, Jim, and travelling a lot.
Twenty-two years ago I was diagnosed with breast cancer. Because Royal Inland Hospital in Kamloops is a mid-sized regional hospital, it offers most of the services needed for any diagnosis and some specialty treatments. However, for radiation therapy, I had to travel to Kelowna, a two-hour drive away. Before starting radiation therapy, I was scheduled for two appointments, a consult and a “mapping” of the region to be treated.
I never understood why all three of my initial visits (the third being the first round of radiation therapy) couldn’t be done in one trip, even if I subsequently needed to visit Kelowna for several consecutive days to receive the radiation therapy. To investigate this, I spoke with everyone at the cancer clinic from the chief oncologist to the booking staff. I compiled a report with several low-cost recommendations to streamline the system and sent copies to the cancer clinic, my provincial member of parliament and the Ministry of Health. My report appeared to generate lots of interest and everyone agreed that there was a problem, leaving me to think that some changes would be made.
Silly me—I came up against the same problem 20 years later.
In 2017, when I was diagnosed with atrial fibrillation, a disruption in the rhythm of the heart which is caused by chaotic electrical signals and can potentially lead to a stroke. All the diagnostic work was done in Kamloops, and I was referred to the atrial fibrillation clinic at St. Paul’s Hospital in Vancouver for a catheter ablation (cauterization of the areas in the heart causing the arrhythmia). In January 2018, I travelled down for what turned out to be a 15-minute chat with the cardiologist. The distance from Vancouver to Kamloops is 350 km; I flew down and bussed back. The trip cost me about $400, when a videoconference would have sufficed.
In April, I had a successful ablation in Vancouver.
In October, I was supposed to return to Vancouver for a checkup, but for unrelated health reasons I couldn’t travel so I requested that we do the appointment remotely. I assumed this would be by video, but when I discovered it wasn’t, I asked why not. Over the phone, the cardiologist told me the video equipment was in a different building, and it would have been too much of a “hassle” to go there. I guess it wouldn’t have been a hassle for me to travel to Vancouver again for a brief face-to-face at a cost of another $400!
After the successful ablation, I was asymptomatic. Even so, protocol demands that one remain on blood thinners, which was no longer possible for me. It was recommended that I be monitored by implanting a loop recorder. This is a small device that looks like a USB and is implanted under the skin near the heart, recording any time the heart exceeds pre-set parameters.
I was referred for the insertion of the device at St. Paul’s last fall.
I phoned the cardiac unit in Kelowna, and sure enough, they are able to implant loop recorders. I requested that my referral be sent there.
When the referral arrived in Kelowna, they called to let me know that the procedure could be done in Kamloops! This is a five-minute outpatient procedure! And yet, even after the recorder was implanted, I had calls from the Vancouver booking office to arrange an appointment at St. Paul’s.
Over the space of one year, I made one expensive and unnecessary journey and avoided at least two others. Not everyone is as lucky. But why? The atrial fibrillation clinic is in another region, yes, but it’s in the same province. The way the health authorities communicate with each other—or don’t—it’s as if they were in different countries.
Our health care system creates obstacles for patients when appointments are booked for tests, exams, consultations and procedures. For many, especially in remote areas, this causes anxiety, unnecessary expense, a waste of time and personal chaos.
I think this is a result of the rapid growth of the health care industry, the wide variety of services, regional fragmentation and swift technological change. I don’t doubt the good intentions of health care workers, but the lack of interest in scheduling flies in the face of “patient-centered care.” It is quite the opposite.
My goal is to change this part of the system. I want the mantra of patient-centered care to actually have some teeth. I want video and telephone consultations used where appropriate. I want health authorities to give greater consideration to the upheaval, cost and stress that unnecessary travel causes people.
Earlier this year, I sent a report to the Interior Health Authority in B.C. which was discussed at their board meeting in February. In mid-April I met with the same board. They get it! I have to be optimistic that remote consults will soon become the norm where appropriate.
I am not stopping there. I have spoken to many organizations. I have collected tales of frustration from people to share with authorities (personal information redacted). I interview specialists about changes they can accept around using video instead of face-to-face. I am networking with others around the province who share my goals. Government departments are hearing from me. It is a steep learning curve, but I am becoming a very squeaky wheel.
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I wish to address you atrial fibrillation. Your focus is the travel cost and upheaval required to attend AF health care in the lower mainland, in your case St. Paul. Living in the lower mainland does not guarantee better treatment; it can even be inferior. (Your wait time was collapsed compared to some in the lower mainland. )
You say you had a consultation at St. Paul in January 2018, with the ablation performed in April — a three to four month wait. In my case, my GP played electrophysiologist for a year until I became persistent, and only then did he refer me to a clinic -Vancouver General Hospital, which I feel, was in the early stages of being set up. I could not even get to see an electrophysiologist without an eight month wait time which got collapsed to five months by my complaining to the manager of the cardiology department. Then, from the EP appointment, it would have been three to six months and beyond for the actual ablation by which time I would be in long-standing persistent atrial fibrillation with a totally remodelled heart guaranteeing a poor ablation outcome. I had to go out-of-country at my own cost, and with still a sufficiently remodelled heart which could have been totally avoided.
My point is that you might want to incorporate wait time with your campaign of travel cost and upheaval ( with also your point on duplicate costs and paperwork).
Excellent analysis. I suspect most people could add to the evidence that we need SO much better communication — utilizing updated use of technology — and SO much more concern for the patients’ time, money, and convenience in our health system.
Kudos to you. Keep up your battle for change
Good on you Fanny! If everyone would start being a squeaky wheel and offer well thought out alternatives for there concerns, perhaps the leaders that should be reviewing these convoluted systems will do what they should be doing. Without much accountability in our major systems, we must be thoughtful squeaky wheels. Thanks
Fanny, once you get BC fixed, please come to Ontario! Even routine visits to one’s nearby general practitioner can be a large burden for some people, and surely some could be done by phone or video call.
An excellent overview of a common problem throughout the health system. Patients can wait months for a specialist consult, travel great distance and incur great costs–only to have a very brief encounter that could have easily been taken care of remotely through video. Good for you for advocating for better options; the system must be designed to improve virtual care and remote consults.
Kudos to you, Fanny. The practices and habits you are working hard to change are, unfortunately, universal across Canada.
Thanks Fanny for relating your experience and thoughts. One can only hope that generic type clinical practice guidelines on conditions and diseases are able to treat each individual with true patient-centred cared unique to each individual rather than what appears to be the case nowadays where such clinical practice guidelines, which governments love to make themselves look better with a “best practice” phoney label and yet being able to deny certain drugs and procedures and diagnostics with the rationale “not enough evidence” despite enough trials to warrant covering the costs for such procedures etc. IMHO evidence-based medicine, in practice, has a long way to go to fully achieve true best practice patient-centred care. The end of generic clinical practice guidelines will be an excellent start in recognizing the unique health situation of every person with their own specific needs and conditions in our health care system.