Private concussion clinics called a ‘Wild West’ of unregulated treatment

Volunteer neurosurgeons staffing a concussion hotline 24 hours a day?

That was the headline reported in the Toronto Star, CBC, CTV, and major newspapers in B.C., Alberta, Saskatchewan and Ontario in early September.

But it was a surprise to Dr. Michael Cusimano, a neurosurgeon at St. Michael’s Hospital in downtown Toronto, who couldn’t imagine any neurosurgeon he knows having the time to take phone calls, free, in the middle of the night.

And there’s no need for a private hotline, he says, when all of the provinces already operate 24-hour telephone health hotlines.

“Hotline advice already exists and it is part of the publicly funded health-care system,” Cusimano said.

Concussion hotline didn’t answer call

We asked one of our producers, whose daughter had a concussion, to call the hotline to test the system. She still hasn’t had a call back. She couldn’t leave a message because the mailbox is full.

Dr. Neilank Jha says he takes most of the calls on a 24-hour concussion hotline, though CBC found his mailbox was full. (CBC)

The widely publicized hotline is the phone number of a private concussion clinic, Konkussion. And the owner, Dr. Neiland Jha, told us that he is basically the only one taking the calls. He says one other doctor sometimes helps him out. Jha is a neurosurgeon who runs a chain of 10 concussion clinics.

“The services we offer are acute diagnosis and we put patients on evidence-based management techniques,” Jha says. “We are seeing tremendous results with meditation.”

“One of the most important things we do is we counsel patients on the current literature and work with them to make them understand the importance of proper recovery,” he says.

It’s evidence of a burgeoning industry catering to highly publicized fears about the long-term effects of concussions.

Private concussion clinics unregulated

It seems anyone can start a hotline, or set up a clinic offering to treat concussions, a brain injury. There is no active federal or provincial oversight. It’s an essentially unregulated field, where massage therapists, chiropractors and nurses can hang out a shingle pitching their expertise in concussion management.

Health services in Canada are governed through a system of self-regulation. Health professionals are licensed by professional associations, and those associations are responsible for limiting the scope of practice. When we asked the Ontario Ministry of Health about the appropriateness of a concussion hotline, we were told to ask the Ontario College of Physicians and Surgeons. The college told us that, unless someone complains, it has no problem with it.

‘A lot of what’s offered to people isn’t improving on the natural course.’
– Dr. Michael Cusimano, neurosurgeon, St. Michael’s Hospital 

But some medical experts do have a problem with the hotline. They’re concerned that the hype around concussions is getting out of control.

“The natural history of most concussions is that they will improve by their own nature, that the brain will recover on its own in 80 to 90 per cent of cases, and so a lot of what’s offered to people isn’t improving on the natural course,” said Cusimano. 

Dr. Michael Cusimano, a neurosurgeon at St. Michael’s Hospital in Toronto, says most concussions heal without any special treatment. (Yuri Markarov/St. Michael’s Hospital/Canadian Press)

If a concussion is suspected, the expert consensus is clear. See your doctor or an emergency room physician. They are the only ones who can rule out a more serious problem. There are concerns that reliance on private clinics might mean a child with a head injury could be seen by a non-medical practitioner first.

Dr. Michael Ellis, a neurosurgeon, runs Manitoba’s only provincially sponsored concussion clinic. He is appalled at the proliferation of unregulated concussion clinics popping up across the country, offering a variety of treatments, including meditation, massage, acupuncture and even hyperbaric oxygen therapy. A quick count reveals more than 200 concussion clinics across Canada. 

Ellis says he has had children referred to him with so-called concussions that were in reality much more serious conditions. 

“We have seen kids that have had medical conditions such as hypertension, cancer, epilepsy, depression and migraines a whole host of neurological and medical conditions,” Ellis says, adding that those conditions could be missed by non-medical professionals at private concussion clinics. 

At the same time, there are concerns that people are paying for private concussion services they don’t need. Ellis says he believes most people with concussions can be managed without any special tests or services. 

Baseline testing not recommended

One of those services is baseline testing, which is being encouraged by minor league sports teams across the country, costing $50 to $150 per child, even though there is no scientific consensus that the tests provide reliable data.

Baseline testing sounds like a good idea, in theory. Before the sports season starts, a healthy child undergoes a series of cognitive, reaction time and balance tests, and those measurements are supposed to reveal something useful about the child’s neural health after a concussion.

But the data, so far, is not reliable. The same child can get a different score on a different day even without a head injury.

Dr. Mike Ellis, a neurosurgeon and medical director of the Pan Am Concussion Program in Winnipeg, is concerned about the proliferation of private concussion clinics. (CBC)

The expert consensus from the International Conference on Concussion in Sport concluded that “there is insufficient evidence to recommend the widespread routine use of baseline neuropsychological  testing.”

A Canadian expert group came to the same conclusion. The Canadian Concussion Collaborative, made up of members from 14 professional health associations — including the Canadian Medical Association, the Canadian Pediatric Association and associations governing family doctors, chiropractors and physiotherapists — concluded that “there is no definitive scientific evidence to support the systematic use” of baseline testing.

Although Jha offers baseline testing at his private concussion clinic for up to $60 per test, he doesn’t think it’s that helpful.

“I am not a huge believer in baseline testing,” says Jha. “It is the best that we have right now, but very often you will see athletes who sustain a concussion, in some cases they actually do better on their baseline test when they are concussed.”

Chiropractic concussion clinics

Cameron Marshall, a chiropractor who runs 170 concussion clinics across Canada, says he believes he is more qualified than the average family doctor to diagnose and treat concussions. He points to studies showing that doctors don’t receive enough training in concussions. He offers a 32-hour online training course, which is not certified because he says there is no one who offers certification. And he supports the use of baseline testing.

Dr. Shannon Bauman runs a concussion clinic in Barrie, Ont. Her fees are covered through the Ontario health plan, but she also works with physiotherapists and other practitioners who charge private fees. She does not support the use of baseline testing and insists that concussion management must be overseen by a medical doctor. 

‘I would say it is a Wild West and unfortunately the people who suffer in this culture are kids and families.’
–Nick Reed, occupational therapist, Holland Bloorview Kid’s Rehabilitation Hospital

Nick Reed, an occupational therapist at the Holland Bloorview Kid’s Rehabilitation Hospital in Toronto, charges parents up to $90 for a baseline test, even though he agrees there is debate about the usefulness of the results. He offers the tests because customers are asking for it, and says it’s one way to keep them from seeking care at another clinic — one that doesn’t offer the publicly funded doctor-supervised services available at his clinic.

 “We need to make sure kids in Toronto get great access to care, and this is one way for us to do that in our current climate,” says Reed.

By “current climate” he means the unregulated field that exists now, where anyone can open a concussion clinic and start treating people for a fee.

“I would say it is a Wild West, and I think unfortunately the people who suffer in this culture are kids and families,” Reed says. “Until we get together to make sure that the people who should be delivering concussion care are delivering it, those kids and families are going to continue to not get appropriate care and to be very confused about what to do when you have a concussion.”