Neuropathic Pain: Call to Action!

My previous columns covered Chronic Pain as a major health issue for Canadians and I identified the provinces that have a comprehensive pain strategy. Ontario is not one of them. ACTION Ontario aims to educate and advocate on behalf of sufferers from neuropathic pain. We worked hard this year to bring to the forefront the need for a comprehensive approach to the diagnosis and management of all chronic pain (not just neuropathic pain).

On November 3, 2009, more than 130 people attended our Forum in downtown Toronto (during National Pain Awareness Week, celebrated in the country during the first week of November). A diverse group of attendees consisted of patients (37%), stakeholders from government and non government organizations as well as the pharmaceutical industry (28%), physicians (9%), other health providers such as therapists, nurses and psychologists (17%) and pain researchers (9%). Organizations that represent patients also participated such as the Canadian Diabetic Association, the Multiple Sclerosis Society, the Canadian Paraplegic Association, the Canadian Pain Coalition and the Canadian Pain Society etc.

The afternoon started with an overview on neuropathic pain, which is one of the most severe and poorly understood forms of chronic pain. Information was then provided on the current gaps in the system in dealing with chronic pain, and the cost of poorly managed pain to society, which is upwards of several billion dollars per year in Ontario for neuropathic pain alone. Of note, in the US the cost of chronic pain in general is upwards of 100 billion dollars every year, equal to the US yearly cost of the Afghanistan war, equal to the cost of cancer or heart disease to the society and twice the cost of depression.

As the chair of ACTION Ontario and director of the Comprehensive Pain Program at Toronto Western Hospital, I shared information on chronic pain strategies in use in other Canadian jurisdictions (Alberta, Quebec and Nova Scotia). The most important part of the symposium, a patient panel, gave the attendees an opportunity to hear firsthand about the struggles of four different patients in accessing care. All patients suffered from neuropathic pain, which originated from different causes including car crashes, a workplace injury and a congenital malformation. Common themes that emerged from the heart breaking stories included difficulty in getting an accurate diagnosis; serious lack of knowledge in primary care physicians; terribly sad situations of resorting to illicit drugs or drowning one’s pain in alcohol because the pain was either not diagnosed or not managed properly, and immense problems with accessing medications and other treatments (either not offered or not publicly paid for in Ontario).

Two experts told us about comprehensive strategies that WORK in Ontario in chronic diseases such as diabetes and stroke, two conditions whose management could serve as a model for an Ontario pain strategy. The symposium concluded with a discussion period, as well as an opportunity for audience members to provide input as to what they felt were important factors in the development of a chronic pain strategy for Ontario.
The input was provided by the use of “clickers”, hand-held electronic devices that allowed the participants to record their answers to multiple choice questions. The feedback was instantaneous as the audience responses were projected immediately on the large screens. The biggest impediment to achieving a comprehensive chronic pain strategy for Ontario was considered to be “lack of understanding of the significance of chronic pain”, while most pain sufferers felt that they had been affected the most by the difficulty in getting an accurate diagnosis. While there were many important factors described as necessary for a comprehensive chronic pain strategy in Ontario, the audience voted that: a) system integration and coordination and b) education of health care providers and in particular physicians, were the most important building blocks.