Here is my report - posted on Millions Missing Canada Facebook page - after meeting with the Health Minister on Wed... (ETA whole document so folks don't have to access Facebook) Building Bridges and Laying Foundations Building relationships is hard! Getting the meeting with Minister Petitpas Taylor has been many months in the making. The short story is three of us had each individually managed to garner an invite from the Minister to meet with her about ME: Jeffery Smith because he’s universally lovable, and Sabrina Poirier because she’s disarmingly charming, and myself because I’m more of a ranting loudmouth. Collectively, it is a result of executing an inside / outside advocacy strategy to apply pressure with both the carrot and the stick. The three of us understand and value the importance of building relationships with the government in order to effect change, so we combined our invites into one meeting. Sabrina, our ME Patient Ambassador for IMHA/CIHR, worked hard to set up not one but two meetings (part 1 as prep for part 2) — first with the Minister’s Policy Advisor via video conference a couple of weeks ago, and then with the Minister herself. Once we secured dates and location, we then reached out to the patients and allies from across Canada who have been working collaboratively on building ME research capacity, to help prepare and participate in the meetings: Paul Lohnes, Alison Rae, Rahul Shetty, Claudine Prud'homme, Christiane Garcia. Jeff and I flew from Toronto to Moncton and met with Sabrina, who had driven from Nova Scotia. Lots of horizontal time at the hotel recovering from the travel, going over strategy, and resting up for the next day. The Minister’s constituency office was a stone’s throw away from the hotel, but none of us can walk a stone’s throw without destructing, so we drove of course. We met up with New Brunswickers and ME patients Carol Stevens and Stephanie Perry for final prep and then met with the Minister. The Meeting We chatted with the Minister before we got down to business and as the other ME patients joined via video. She told us a bit about her time as a social worker with the RCMP and I asked how she dealt with the secondary trauma that may come from that work. The Minister says she has the ability to separate her work and personal life, so she doesn’t ‘take it home’ with her at the end of the day. We all did quick self introductions to the Minister, and very briefly shared some ME history and facts, like: the WHO classification of ME as neurological 50 years ago...yet little progress since over 580,000 Canadians diagnosed according to 2016 data Canada has the highest ME rates in the world...yet near zero research funding four different researchers have found ‘something in the blood’ of ME patients We also talked about the fraudulent science that said ME is psychological and how this has lead to the lowest quality of life, lowest income, lowest food security, lowest health care...and highest suicide rates. We told the Minister about how our financial, medical, employment and social needs are not met — that we rarely get the Disability Tax Credit or CPP-D, or access to appropriate and safe housing, or home and community care. Mixed organically throughout the meeting were powerful and compelling anecdotes from patients. The Minister asked us how long it took us to get a diagnosis, and this prompted stories from all. Not surprisingly all our stories about diagnosis had themes of doctor denial, medical trauma, and experiences of discrimination, marginalization and misogyny. We shared about the different levels of severity of ME. I told the Minister how I’ve worked closely on advocacy with Barb Fifield for over 3 years but have not heard her voice because she’s too ill. We shared about Ryan Fisch who is bedbound and the death of Justin Noble, and how their families and friends have had to point donations to the US for ME research, because there is no ME research in Canada. We shared about how we can rarely get access to off-label medications because doctors are afraid of losing their license. We also shared about how many patients have to travel to the US — and pay out of pocket to contribute to their economy — for diagnosis and symptom treatment. Recognition, Inclusion and Equity In terms of moving forward, our themes were recognition, inclusion and equity, and we talked about what that might look like: if ME was funded equitably for research, it would be about $90 million a year, if the Minister held a press conference to validate ME as biological, much of the medical harm we experience would stop the next day, if the Minister were to speak to her colleagues about our CPP-D, DTC, etc. issues, it would help our community access those support programs. During all this, the Minister listened attentively and interjected with her own questions that were more about our experiences than about policy. On reflection, policy should be tailored for patient need and experience, and presumably that was why she asked those questions. The Minister seemed genuine in her responses and comments, and was obviously empathic, so I definitely felt heard. At no point did I feel that this meeting was perfunctory, or that we were just being placated. Minister Petitpas Taylor has promised to work with her staff and get back to us to discuss and collaborate on next steps. The Minister had said earlier in the meeting that she was a woman of her word. Admittedly she followed through on her invitations to us. So with that in mind, and the relationship we’ve been developing, I expect her to keep her word. Having said that, the federal election is fast approaching and that means the government will be (even) slower in its ability to implement changes. And depending on the outcome of the election, we may have to start relationship building over again if another party comes into power. Forward Looking The federal election is a factor largely outside our community’s control, except for our individual election votes, and we made the point that 580,000 pwME and our families represent a very large number of voters. While this meeting with the Minister is high profile to our community, the real work of building relationships has been ongoing since the Montreal conference in May last year. Collaboration — within community and with government — is key to getting ME on the bureaucratic agenda. We know that if we want to move the ME agenda forward in government, we must have the right people with the right interpersonal skills, in the right roles, to build working relationships in order to make all the changes we need for inclusion, equity and recognition. Moving the ME agenda forward is really about changing how the institutions of government and medicine treat ME and people with ME. No small feat, and it can’t be done overnight...unless we overthrow the government, but none of us are well enough to throw any thing. How You Can Help This was a pivotal meeting for our community and the fruits of our collective labour is to be seen in the weeks and months ahead. An immense amount of time and energy has been expended to get us here, and more time and energy will be needed to keep up the momentum. Key to that momentum is the participation and support from each of you, our ME community — it is vital to our collective cause. If you're advocacy minded, and have a strong desire to be part of the team that ushers in key change for the Canadian ME community, email us with your background and skills. Building constructive and working relationships with the government is hard work and time consuming, and while we donate our time and energy to making the conditions and supports for ME patients better in Canada, there are travel and accommodation costs that cannot be avoided. Donations would be greatly appreciated to help share this burden: https://www.gofundme.com/MillionsMissingCanada #MyalgicEncephalomyelitis #EncéphalomyéliteMyalgique
I'm so glad the meeting happened, and went well. Thank you for the very well organized, thorough approach, and for taking our message to the Minister. It was great for members of our community to be able to meet directly with her. I hope the government does understand ME effects almost 600,000, as well as their families and friends. Not to mention the frustrated physicians and other health workers who cannot provide meaningful help for these hundreds of thousands. Thank you @ScottTriGuy, and your colleagues for persevering, the well organized and thoughtful presentation and for all your ME advocacy work! Will the Minister be following up with your group? Any more meetings planned with her? Thank you very much for this, and I hope we see positive changes in the near future. Cheers!
Thanks @DokaGirl We anticipate she will confer with her staff and give them direction - we'll more than likely continue to work with the policy advisor we've been working with for months - but the federal election in the fall may shake things up / slow things down. The next step is to see what direction she gives her staff, that'll be an indicator of her intent / ability in the election context. Regardless of the election, in August we're anticipating a favourable (fingers crossed) decision for the submission for CIHR funding for a ME research network. She seemed to like to hear that that project was a focal / collaborative point for the 3 national orgs.
Thank you for your sustained efforts @ScottTriGuy . Persistence is so important for finding a solution and apparently you and the rest of the team does not give up that easily. Good Luck !
Thanks @NelliePledge and @mariovitali I agree, persistence, or the current popular term 'grit', is a big factor. The other key factor is building a working relationship with the govt - not everyone appreciates or values its importance. People like working with people they like, it is human nature - fortunately (and intentionally) Jeff and Sabrina were my partners and they are both naturally charming.
@ScottTriGuy - it is very important to have a working relationship with the government. It's been difficult for the ME community to do this for a number of reasons. One practical one is the names on the seats may change every 4 years, or even more frequently. Staff changes in vital government offices may also be frequent. Continuity is just one barrier. There are, as we know many more historical and current barriers. Governments hold a lot of the cards. Funds, design of education (along with the colleges, and educational institutions), media connections, etc. The community cannot do it all. It's been such a circular problem. To get the medical establishment on board, we need governments to be on board, but it's been exceedingly difficult to get governments on board. Difficult to know where to step into that circle, and start working on it. You and your team have accomplished an important step. I hope the Health Ministry will make a significant improvement soon. Thanks again!
Totally concur @DokaGirl Our patient community has no resources, and very little health - it absurd that we have to do so much to get the govt to do their job - if only I was dictator!
Scott and all, many thanks indeed--this is really great news! Don't know if I can be of any help--am now 86, and that and ME don't leave me much of anything, but I try to more or less keep up with the resarch, and can still write a bit. Chris
