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Chronic pain a growing problem, health summit hears

April 24, 2012 » Ottawa

Chronic pain a growing problem, health summit hears

By Sharon Kirkey, Postmedia News April 24, 2012 5:01 PM

Many patients who need opioids to help control pain can't find a family doctor willing to treat them,

OTTAWA — Tens of thousands of Canadians are living with unrelenting pain that can be isolating, demoralizing and deadly, a national summit on pain heard Tuesday.

Yet while access to pain relief is a fundamental human right, wait times for pain care in Canada grow longer by the day, pain doctors and leaders of patient groups say. Many patients who need opioids to help control pain can't find a family doctor willing to treat them, the one-day gathering in Ottawa heard. Even children are suffering under-treated and poorly managed pain.

Chronic pain "assaults us physically, emotionally and spiritually," said Lynn Cooper, president of the Canadian Pain Coalition. "Pain can be devastating, debilitating, demoralizing and dehumanizing. And all too frequently, it turns deadly."

Those living with chronic pain experience stigma, discrimination and the "shame of pain, when we are labelled as complainers, malingerers and drug-seekers," Cooper said.

"Access to pain management is a right not being met in Canada," she said. "Canada as a developed country has a moral imperative to do better than this. We can do better than this."

It is estimated that one in five Canadians — roughly six million people — is living with chronic pain of some kind. Over the next two decades, as the population ages and modern medicine allows people to survive serious illness, that number is expected to swell to one in three.

Pain researchers, doctors and patient groups want a national pain strategy that would see more specialized pain clinics, more training of doctors in the diagnosis, treatment and prevention of pain and improved community-level care.

The summit heard that six to eight per cent of children in Canada are living with intense and frequent pain — persistent pain from surgery or trauma, juvenile fibromyalgia, arthritis, chronic headaches and chronic abdominal pain — but that children have even less access to organized pain treatment than do adults.

"Imagine being the parent of a child with cancer who won't even let you hug her because it hurts too much," said Dr. Allen Finley, professor of anesthesia and psychology at Dalhousie University in Halifax, and a world leader in pediatric pain management.

"Imagine being a teenager with chronic pain who nobody believes. Imagine being too young to find the words to say, it hurts," said Finley, medical director of pediatric pain management at IWK Health Centre in Halifax.

He said one of his patients described the pain as feeling like "meat knives carved into my joints, running through my bones and jabbing into my soft tissues. And it's not the kind of thing you get used to, either."

Finley said there are "hugely more children" affected by pain than the half-dozen pediatric pain clinics across the country can begin to handle.

"We need another strategy," he said. "We need more staff and support to not only treat those kids directly but also to build capacity in primary care to prevent problems from becoming difficult," he said.

People with chronic pain are stigmatized and frequently treated as addicts, or would-be addicts, the summit heard.

"What a cruel thing to do someone who is already suffering from pain," said Dr. Michael Cousins, director of the Pain Management Research Institute at the University of Sydney in Australia.

"It's not just a matter of giving somebody a drug, particularly an opioid. There are many options open," he said. "And yet this is not recognized by many health professionals," or the general public, he said.

Katie Roberston, 18, of Quensel, B.C., has lived with chronic pain since she was 13. She has Marfan Syndrome, a genetic connective tissue disorder. "Since then my life has gone down a path that I never would have imagined," she told the summit.

The pain started in her ribs; it felt as if they were on fire. She started getting regular headaches, until she had them more often than not. The pain moved to her back, her hips, her foot, "until I could honestly say that I was hurting head to toe." A pediatrician told her the pain was in her head. "It was suggested that I was a teenager just looking to get out of school," she said.

She said it took years to get proper care, or to even her pain acknowledged by doctors. "I was scared, I knew that something was wrong with me and that I wasn't being treated." The gathering featured a live performance of the Parachute Club hit, "Rise Up," by Lorraine Segato — one day after the death of the band's co-founder, Billy Bryans, from lung cancer.

Segato described how she and friends spent the past nine weeks at a bedside vigil. "The No. 1 thing we were concerned about, always was, does he have pain, and does he have anxiety," Segato said. "The doctors took care of the pain part, and that's fantastic. The anxiety part was something we could help him with."

Segato said she has suffered with fibromyalgia pain for 22 years, chronic pain brought on by years of lugging around equipment, a fall off stage, a car accident and "numerous traumatic experiences." When she went to a doctor with her symptoms of pain, Segato said he told her, "I don't know what to do. I don't know what that is." "I started to think I might be hysterical, and that of course made it worse because I mistrusted myself."

A rheumatologist eventually diagnosed fibromyalgia. He suggested she try antidepressants. "I was lucky, because I found my way," said Segato, who uses yoga, acupuncture, exercise and other techniques to help manage the pain.

More frustrating was "the lack of validation along the way, the lack of acknowledgement that the (pain) is real, that it's not just emotional . . . that it's not something in your head, you're not a hypochondriac," she said.