Labelled a "drama queen," Janice Frampton endured constant and debilitating neuropathic pain while people dismissed her symptoms. It took her 46 years to be diagnosed with Tethered Spinal Cord Syndrome (TSCS), which causes the pain she experiences in her legs and abdomen.
Like so many neuropathic and chronic pain sufferers, Janice was caught in the health-care maze, bouncing between health professionals to find out what was wrong.
"I've lived a lifetime riddled with excruciating pain, physical as well as emotional," Janice says. "There were many cries for help that nobody listened to."
Janice is just one of the estimated one million patients in Ontario with neuropathic pain—the most excruciating and complex form of pain. Its causes are many, including multiple sclerosis, diabetes, AIDS, cancer, stroke, spinal-cord injury and nerve injuries. Unfortunately, people suffering from neuropathic pain often have difficulty receiving proper diagnosis and appropriate treatment.
When Janice finally received the correct diagnosis and found appropriate pain treatment with Dr. Angela Mailis at the Krembil Neuroscience Centre's Comprehensive Pain Program (CPP), her life changed dramatically. Although Janice still lives with pain, she is able to manage it better so that it is no longer the ruling force in her life.
Patient stories like this prompted Dr. Mailis, Director of the CPP to create ACTION Ontario, an advocacy group for those suffering with neuropathic pain. Through this group, she has also organized an annual symposium to raise awareness about neuropathic and chronic pain. This year's symposium, "Towards an Ontario Strategy," highlighted the need for a comprehensive, provincial plan to provide timely access for patients suffering from all forms of chronic pain.
"Patients in the community face what I call 'spaghetti care'," Dr. Mailis says. "The tangled noodles represent the uncoordinated, imbalanced and broken communication that patients in our system face every day."
Janice and several other patients suffering from neuropathic pain courageously shared their stories at the symposium, which highlighted common struggles including obtaining a diagnosis, availability of treatments, accessibility to those treatments and affordability.
Quebec, Nova Scotia and Alberta currently have chronic pain strategies in place. Dr. Mailis and her colleagues are examining the way these jurisdictions provide comprehensive care to patients to help Ontario develop a better approach. In fact, Ontario has already developed successful provincial strategies for diabetes and stroke.
"Momentum around closing the gaps around chronic pain care is growing," Dr. Mailis says. "There are many who are passionate about joining our voices together for the chance of making things better for those who must battle with pain."
To learn more about ACTION Ontario, visit www.actionontario.ca.
