Consumer impressions of the ACAP Summit

There were so many compelling consumer voices at the ACAP Summit. Where does one begin?

I remember Joyce Greene’s fierce description of the arthritis epidemic among aboriginal Canadians and her resolve to do something immediate and constructive about it; Jean Legare’s eloquent apostrophe to the working of his hands—a hymn of sorts to this vital human tool for interaction with the world; Lori Peterson’s cheerful, enduring courage; Mary Kim’s delightful sense of humour about her nearly Olympian record of surgeries; and Pat Carney’s colourful, inspirational garden. And there were so many more. What wonderful people---I felt privileged to be in their company.

U.S. President John Kennedy kept a sign on his desk that said, “Oh God, thy sea is so great and my boat is so small.” All of us who sail the oceans on the “SS Arthritis” know that feeling of being insignificant, of being overwhelmed by the disease. The sea is very great. But our boat--- filled as it is with the very best of crews and fellow passengers--- is not small. It is as large as our collective courage can make it ---and that is very large indeed.

Gordon Whitehead Person with arthritis and Summit delegate

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At this Summit my opinions are not only welcome, they are expected. This is a first!

Mary Kim Person with arthritis and Summit delegate

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The Summit on Standards for Arthritis Prevention and Care felt like the first time people with arthritis were truly “driving the bus”. When everyone with arthritis stood during the opening plenary session to have their disease acknowledged, I saw how the power of recognition could galvanize a community. I will never forget those moments of applause for my friends and colleagues who have provided fearless and tireless energy to help 4 million other Canadians live better lives with their arthritis. “Rocking the joint” never felt so good and so promising!

Cheryl Koehn Person with arthritis and Summit delegate

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Now you are asking me to pull something out of my very challenged memory! Here are two that come to mind:

• Only by making patients equal stakeholders in every aspect of health care decision-making will they be able to share responsibility for health care outcomes.

And,

• It is time that we stop letting patients off the hook and make them equal partners in their health care, which brings with it equal responsibility.

I don’t believe that I have ever given a presentation or attended a conference where I haven’t stated the above comment, in some form or another and used it in context, of course. To be equal partners, patients must have every treatment option available, in order to choose what is appropriate for them. The first observation applies primarily to decisions on health policy, but it is also personal. The second properly refers to personal health care decisions---decisions on treatment options should be made between a health professional and the patient—as partners.

Linda Wilhelm Person with arthritis and Summit delegate

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Scientists can tell you "why" arthritis is so devastating, and explain the chemical changes happening in cartilage and synovial tissue. Policy makers can tell the audience how much it affects the Canadian economy in medication and health care costs. But, the people living with arthritis are the only ones with experience who can share their perspective with others on what it’s like to live with this disease. This is exactly what was expected from the consumers attending at the Summit. This is why the Summit was such a success: consumers share their experience and presented their perspective. They were expected to do it and they did it loud and clear.

Jean Légaré Person with arthritis and Summit delegate

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My impression of the Summit was of great energy – energy that filled rooms and focussed everyone on the single and important task of developing the Standards.

The presence of strong representation from Juvenile Arthritis and aboriginals was a first for this type of arthritis stakeholder meeting. The biggest shortcoming was, as always, the near absence of family physicians.

The preparation for the Summit was outstanding. The draft standards added value to the workshop discussions. It was great to have Health Canada participants involved as the workshop facilitators and for those who had prepared the draft standards to hear directly from the participants.

My overall impression? Tremendous energy, great focus, and a will to work together to get the job of developing Standards done.

Awe-inspiring!

Anne Dooley Person with arthritis and Summit delegate

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To say that I was excited about going to Ottawa for the Summit is to put it mildly! Not only was I going to have the opportunity to make worthwhile contributions to the future goals and Standards for treating my personal life-long “albatross”, but I was going to visit our Canadian capitol—a place I had not been to before!

The sun shone beautifully the entire time I was in Ottawa and I think the sun also shone warmly and brilliantly on the Summit, even though we were indoors. It is truly an understatement just to indicate that there were meetings during the Summit, there were also pre-Summit meetings, evening get-togethers, lunch meetings, coffee-break “touch-downs”, -and those were the ones that were pre-planned! And even in between these occasions, we all made connections and contacts with people we had e-mailed on numerous occasions or with whom we shared a common goal. Now they all had faces. It was wonderful to finally meet these people!

The speakers during the first morning were very inspirational. Cheryl Koehn led the “charge’ with three fellow arthritis patient advocates. We felt their sheer determination and will that these standards for prevention and care would be developed by us and would be implemented. And when we broke into the first small groups in the afternoon to review the committee’s suggestions for the Standards, the expectation was that consumers would participate.

I have always been quite shy in a large group of strangers (more than 4 people), at least, that is my historical perception of myself. Not any more! I think I discovered my voice at the Summit, or perhaps, it is more that I suddenly realized that I truly did have a lot to say, because I did know much more about arthritis than I imagined. And perhaps, I can also say, in some of the small group sessions, I was occasionally shocked to realize that some of the participants did not know what I have lived, that it was not common knowledge or common sense to everyone.

And now I truly believe that we, as consumers, must be involved in the decisions that governments make about our care and we must lead them to make appropriate, humane, and sustainable decisions. The compelling phrase: “Nothing About Us, without Us” is not a wish, but an imperative.

Delia Cooper Person with arthritis and Summit delegate