Nancy is “beyond frustrated” with how long her family has had to wait to see specialists. She has been waiting 16 months to see a rheumatologist, and has been told there’s a two-year wait to a pain management centre to help with her chronic pain, despite the fact that she’s taking two opioid drugs and is still too disabled to work.
Meanwhile, her husband waited 160 days for a referral to a gastroenterologist after having daily nausea, vomiting, upper abdominal pain and exhaustion. He’s now waiting to get tests in nearby London, Ontario, to see if he has pancreatic cancer.
“We are very fearful that the long wait times for appointments and tests will reduce his chance for survival if he does indeed have a pancreatic tumour,” she says. “What benefit is there to living near exceptional health services if you can’t actually get appointments?”
Canadian wait times for surgery and certain imaging tests have made headlines since the early 2000s, when the provinces agreed to a joint plan that did reduce wait times for priority surgeries after the patient had seen the surgeon. But we’re far less likely to hear about the time patients wait to see a specialist.
“You can get priority surgery wait times down to less than three months, but if it takes a year to see the surgeon before you get on the wait list, we’re really not doing well,” explains Chris Simpson, a cardiologist who also chaired the now-defunct national Wait Time Alliance.
The 2014 Commonwealth Fund Survey of Older Adults found that 70 percent of primary care doctors thought that their patients often had long wait times to see specialists. It also found more than 25 percent of patients surveyed waited at least two months to see a specialist—the worst of all 11 countries surveyed.
The current referral model: perils and pitfalls
Referrals are integral to our health care system, yet they are often done in a disorganized, haphazard way. Here’s what typically happens when a doctor refers patients to a specialist.
Ideally, a primary care provider refers patients to a specialist who has the right skills for the problem. They would send all the necessary information, and the specialist would then triage the patient according to urgency. The specialist sees the patient, and promptly informs the referring doctor of what happened in the appointment. Specialists would also be available for one-off questions about patients who don’t need a referral but could be treated in primary care.
But often, that’s not what happens. In the worst case scenario, the referral, which is often faxed, gets misplaced or lost entirely. That’s what happened in the case of Greg Price, the young Alberta man who died of cancer after his referrals repeatedly fell through the cracks. At one point, he was told by a doctor who suspected he had cancer that he would be referred to a urology centre, and to expect a call from a specialist within a few days. When he didn’t and followed up, they told him to call the specialist himself. He did—and got a recorded message saying that specialist was away and not seeing patients.
That story is an example of how much “variability” there is in how doctors do referrals, says Jodi Glassford, who leads Alberta Netcare eReferral. “Sometimes when I talk to my friends, I’m like, ‘You’ve gotta follow up. You have to be that patient who’s difficult, because who knows?’ You have no transparency into did it get through, am I on the list, will I be seen?”
It’s unusual for an urgent patient to fall through the cracks as Price did. Normally, a family doctor would call or email a specialist directly and express their concerns, and most specialists do a good job of fitting urgent patients in.
But for patients who aren’t urgent, disorganization and miscommunication is not uncommon. If a primary care provider doesn’t know a specialist, they’ll often pick one off a list without even knowing their subspecialty. Sometimes, they’ll find they’ve picked wrong. “I’ll do up a complete assessment on a patient with a really bad knee, refer her to orthopedics, and three months later I hear back that that specialist only does shoulders. Or you send somebody to a neurologist for seizures and they only do headaches. That’s common,” says Rick Glazier, a family doctor at St. Michael’s Hospital’s Academic Family Health Team.
Or, since there’s usually no way of seeing how long the wait list for a specialist is, they might select someone whose wait lists are far longer than their colleagues’. Some of the work in Alberta looked at the current referral process and found that it was common for specialists to simply turn away patients. “They just say, ‘I don’t have enough capacity, I can’t see these patients and put ‘decline’ on it,” she says. “Then it goes back to primary care, and primary care says, ‘It’s been declined five times.’”
To get around these barriers, some primary care providers use what’s called a shotgun approach, where they submit referrals to multiple specialists at once, and hope that one will stick. That might help the patient, but harms the system as a whole, since patients can end up with two specialist appointments as a result, and other patients’ referrals get delayed.
Or the doctor might direct patients to the emergency room—another less-than-ideal solution that can lead to overcrowding in the emergency department. But sometimes that’s the only option, says Glazier. “If my patient has headaches that are getting more and more severe, and they have their neurology appointment [in a few months], and they’re on a cancellation list, I might send them to the emergency department. It becomes plan B for when people are waiting too long.” Patients in a report by the Health Quality Council of Alberta also said their doctors advised them to keep going back to the emergency room after struggling to get them seen by specialists in a timely manner.
Those workarounds, combined with triage from specialists, work most of the time. But “I think we’ve all had the experience where somebody has sat patiently on a waiting list for two months, and really should have been seen sooner,” says Thomas Parker, head of medicine at St. Michael’s Hospital. “Prolonged wait times might be associated with outcomes we’re not aware of. And if you start viewing it from a patient’s perspective, you also want to provide good and timely service to patients.”
Jim Waddell, access to care provincial clinical lead for orthopaedic surgery at Cancer Care Ontario, agrees. “For people who do need treatment, long wait times are unfair,” he says. “First of all, if you have a progressive, degenerative condition, you do get worse while you’re waiting. Secondly, these people have pain, and they’re disabled by their pain. Thirdly, because of that pain, their family physicians often put them on opioids for pain relief, and many of them have a problems afterwards with the drug.”
There is also evidence the scarcity of specialist referrals is an equity issue, with research showing that people with lower socioeconomic status are less likely to see specialists than those who are better off.
The referral process can be frustrating to both primary care providers and specialists. A 2011 CMA survey found the majority of both family physicians and specialists were frustrated by insufficient information in referrals. The top frustrations from family physicians were difficulties in finding available specialists, not getting acknowledgement of referrals, and having it be their job to tell the patient about the appointment. Idiosyncratic referral processes are also a common complaint—a separate Canadian Medical Association report on the issue discussed specialists who only accept referrals on one day each month as an example. Specialists, for their part, are trying to triage patients without enough supporting information, like lab tests, and unclear reasons for the referral.
In response to these issues, pilot projects across the country have popped up trying to streamline the referral process. Advancements in electronic medical records have paved the way for electronic consultations and e-referrals, and many specialists have adopted central intake systems that allow providers to refer to the next available specialist.
But that’s another story—literally. We’ll delve deeper into four ways Canada can reduce wait times for specialists in our next article on the topic. Look for it on February 23.