2016 Lyme disease conference public forum overview

Conference to develop a federal framework on Lyme disease

May 15-17, 2016, Government of Canada Conference Centre, 111 Sussex Drive, Ottawa, ON

Conference day 2: Monday May 16, 2016, Algonquin Room

Audio Recording


Dan: [00:00:00]

Ladies and gentlemen, we are going to begin. We will begin. So, I'll ask you to, for those of you in the overflow room, if you could move to a chair. Participants in the Algonquin room, I'll ask you to find a chair and a table, or any chair, so that we can begin.

We have a lot of good work to do this afternoon. Ladies and gentlemen, we have a lot of work to do this afternoon, let's get started. In 15 minutes, I will be asking you to move to the rooms that you've selected so that you can be working on either surveillance, education and awareness, or guidelines and best practices. The choices, I think you've already made them. The purpose of the next 10, 12 minutes will be for me to share with you- because like you, I was here last night in this room, and I facilitated the WebEx exchange for all those individuals who were on WebEx. And there were, of course, three other rooms where people had a chance to tell their stories, and you were in those rooms. My job now, humbly, is to share with you the essence of what was said, and the feelings that were shared. And also, to share the essence of what has been shared and convey the broader themes that emerged.

So, of course, just for your update, more than 700 participants have been engaged in this process so far. We heard 106 speakers in person and online last night, an additional 237 in-person participants and 400 listening online. This is a lot of people. We heard from patients and, like you, I heard from their families, their caregivers, and health professionals including doctors, naturopaths, and nurses. There seemed to be, of course, and you'll tell me before I'm able to tell you, very many common threads in the concerns of all. One of the key themes that are really being pulled out of this, now, is there's a clear, clear need for a plan for action. And of course, all of the presentations that were made last night will be available online shortly.

Essentially, there were several testimonies that shared with us the essence of the experience of patients. Last night, we heard quite a bit of patient experience, we heard, "Abandonment, dismissed, we're invisible, we're not listened to, we're accused of making things up, we're even attacked for mentioning Lyme. We're misdiagnosed, we have a deep sense of fear, of anger, of suffering. Our lives have been destroyed." Huge costs, many people have shared; financial burdens, lifestyle, careers, family, many things shattered for many people, with lifelong consequences. Getting Lyme disease and not being diagnosed, not being diagnosed properly, according to the stories that we've heard, is associated with bad luck and good luck, and many of you have said that we want to move towards good luck, but away from the realm of luck, "Let's have our needs and situations addressed."

You also said, "Our medical system has failed Lyme disease patients; I was dismissed by doctors." Others said, "It has cost us our retirement. The doctors said, "We do not have Lyme disease here." We saw specialist after specialist. I need my health. I want to take my life back. Doctors looked at each individual symptom, and not everything as a collective. I was told it was a spider bite, even with the bullseye rash."

Others who presented last night said, "I was treated with ignorance and denial. We need reliable tests and confident doctors. We're seen as a drain on the medical system. I was told it was all in my head. We need a made-in-Canada solution. "

Some of you said, "When nothing showed up in the blood work the doctors stopped testing. I was advised to leave my Canadian health system and get treatment in the U.S." Now, there's common themes that seem to be emerging, and what we tried to do to the best of our ability, and of course this is not comprehensive and I'm just giving you the very brief tip of the iceberg, but under the banner and theme of surveillance we heard that there's significant under-reporting and many more Canadians are suffering from Lyme disease. So, for those of you discussing surveillance that seems to be an issue that was raised last night. Under diagnostic and treatment guidelines, many doctors are not recognizing Lyme disease and refusing to test. Early detection is essential, some of you said, and the burden of disease increases if it's not treated early. There's a notion that you raised, relative to co-infection and multiple strains that they need to be acknowledged and tested for. And, of course, the recurring theme: we need made-in-Canada guidelines now. Other common themes related to education and awareness is those who shared their stories last night said that Canadians are not aware, and there needs to be far more prevention and recognition of the symptoms.

You also said that the medical practice is not as informed as it should be. Lyme disease stigmatizes patients, those who have it, and we must change this. We need simple, accessible, standardized information that's appropriate for what's going on in Canada and infecting or involving Canadians, of course. There's a Lyme disease tool kit that really is necessary for all health care professionals.

So, ladies and gentlemen, I know there are many, many more ideas and stories of wisdom, determination, and courage that were shared with us last night, and please join me in, again, thanking those who had the courage to share them with us.

Now, for the next part of the conference. This afternoon, we're beginning the deep dives in the specific themes of guidelines, best practices, education, awareness, and surveillance. Those of you who have chosen guidelines and best practices will be working in here, beginning in a few moments, and your facilitator will be Lise Hebabi, to my right, to your left. In Fremain-Guiges down the hall, beyond the washrooms, for those of you who are going to be working on education and awareness, and your facilitator will be Kathleen Connelly, who's in the back of the room now, for those of you who are going there. Kathleen Connelly. And across the way in the overflow room, Rideau Falls, for those of you who will be discussing surveillance, and the facilitator there is Alain Rabeau. So, folks, I wish you a great afternoon. We're not going to, in the interests of giving you as much time as possible, we're not going to be coming back here this afternoon, but we'll be starting back up here tomorrow morning, where I'm going to be asking your facilitators to share the key things that emerged in your session, so that we can all benefit on what has gone on in each other's sessions, because we will be attending one session at a time this afternoon. So, without further due, I would invite you to move to your sessions now, and I wish you a great afternoon, and we'll see you back in here tomorrow morning at nine o'clock. Good afternoon, good discussions.

[Open mic - background noise for several minutes]

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