Advocate speaks out on chronic pain treatment

Health Canada estimates that nearly eight million people live with chronic pain, defined as any pain that’s continuous for three months or longer. Alberta Health Services (AHS) has programs and supports designed specifically for those who suffer from it, yet those programs are not medical treatments.

Increasingly, those burdened by chronic pain are finding themselves at odds with a system that has sounded the alarm on an opioid crisis that seems to have two causes: too many doctors prescribing too many narcotics, and the illegal manufacture of hyper-potent street drugs.

For pain patients who want to share their experiences with each other, HELP Alberta is an online community with a Facebook page as its central hub. The group is led by founder and advocate Tracy Fossum, and her goal is to protect the human rights of pain patients and allow their voices to be heard. In her opinion, the issue of pain management is one that is burdened by a divide between doctors and patients. Put simply, there is a clash between the precautions doctors are expected to take when prescribing narcotics and a patient’s right to use them to alleviate pain. Chronic pain differs from acute pain in that its duration is prolonged and sometimes permanent. The dilemma is obvious; the medical profession is hesitant to hand out continuous refill prescriptions for pills that have high addiction potential, and pain patients see those same medications as necessary for basic functioning.

Fossum has chronic headaches and autoimmune issues, and both have led to a lifelong struggle with pain. She went to college, got a degree, and by then her pain was beginning to peak. She ended up being basically bedridden for almost eight years.

“More in bed than out of bed,” she said. “When I did my rehabilitation back into life, which means I was moving and out of bed, it didn’t mean that I was pain free. I didn’t really have anyone to hold my hand and help me. It required something from me that I don’t think is fair to ask of very many people. What I wanted to see were things that make the process easier,” she said.

She has a condition called palindromic arthritis, which causes flu like symptoms with a spiked fever. Inflammation around the joints and connective tissues moves into the muscles and spreads out into the body. This is accompanied by an immune dysregulation. It’s a complicated illness in which one thing aggravates the other.

To emphasize her point about patient-doctor friction, she told a story about presenting herself at an emergency room, where the hospital “decided I was drug seeking,” and sent her home without getting the blood work back. The second hospital that she went to eight hours later saw that she’d been in the hospital earlier and looked at her medication list. She said she sat in an emergency room for six hours with an active heart attack.

“Nobody took me seriously until my heart was stopping. I’m not a frequent flyer at a hospital. I’m not suffering from any (substance) use disorder. I don’t start begging for narcotics every time I go in. Chronic illness should not be managed in an emergency room; emergency people don’t like it much and the patients don’t either.”

Fossum said that HELP Alberta has created a network with professionals as well as patients, which is a first in Alberta.

“We made it a priority not just to complain, but also participate in the improvement of chronic pain treatment in Alberta.”

In her online bio, Fossum says, “I strive to ensure that every patient’s human rights are protected.” In person she said, “I would say that in Canada we have the right to make decisions about our care and to participate in decisions about our care. We have the right to access of care, and we should not be discriminated against when it comes to those things based on what illnesses we have.”

Fossum believes that doctors are more open to discussing medication options if they’re dealing with other conditions like high blood pressure or diabetes. She said for patients with those conditions, doctors try to make them as comfortable as possible.

“But the minute that I have chronic pain, there is a butting of heads. It’s like, ‘I’m gonna tell you how this is gonna go, and you don’t have a choice.’ And if we run into trouble their answer is, ‘That’s all I can do and walk away.’ Whereas if it was diabetes we wouldn’t walk away, we would escalate it up to the next level. We’d find another specialist.”

“If I show up and want to go into a walk-in clinic, the first thing they are going to tell me is, ‘We don’t treat chronic pain or we don’t prescribe opioids.’ Even if it was a matter of, ‘I lost my prescription, or I ran out and my doctor’s not in the office, and I’m going to be free falling for a week.’ Most often what we hear is ‘go to a hospital’. Then we go to an emergency room and they’re not happy to see us, so we meet with treatment that’s inappropriate or second rate or disrespectful.”

“If I change doctors, I’m always at risk that the doctor’s answer is going to be ‘no opioids.’ I am at risk that I can’t decide that this treatment form is working and successful. You can’t find a reason that it is causing me harm in a way that should be stopped. I’m not abusing them, I don’t show any signs of use disorder, I don’t have mental difficulties from it and it’s not impacting my function. In fact, we know that removing it or reduction of it leaves me unable to function.”

Fossum firmly believes that each patient’s medical choices are something that should be made with and not just by their doctors.

“Instead, our doctors are making them along with the College of Physicians and Surgeons because they’re afraid of them. The fact that our system keeps making decisions that make it harder and harder for us to find doctors that want to care for us puts up barriers to care that other people don’t have. I created HELP Alberta to give a voice to patients who wouldn’t have one otherwise.”

Cal Braid, Local Journalism Initiative reporter, Lethbridge Herald