Friday, September 19, 2014

New Patient-Driven Arthritis Charter in Canada

To mark Arthritis Awareness Month, the Canadian Arthritis Patient Alliance (CAPA) has released the Arthritis Charter, created by people who live with arthritis for people who live with arthritis. What is the Charter? Dawn Richards, Vice-Chair of CAPA, graciously agreed to answer some of my questions

What is the Canadian Arthritis Patient Alliance and what does it do?
CAPA, as we call ourselves, is a not-for-profit, patient-driven organization that strives to represent Canadians living with arthritis. It’s been around since 2001. We advocate for all things arthritis, to educate and raise awareness, and for access to treatments (drugs and otherwise), often through partnerships. For example, we have recently submitted patient input to the Common Drug Review, which is part of getting a drug approved for provincial formularies. We represent the patient perspective about why it’s important to have new options to treat arthritis, and that even though some of these treatments are very expensive, in the long run, allowing people access to these medications is a good thing. Having a person who is able to have a job, contribute to their family, take part in social activities, etc., costs society and our healthcare system far less overall than what the actual pharmaceutical treatment costs.

What is the Arthritis Charter?
The Charter is a bill of rights and responsibilities that helps people with arthritis understand the kind of care they should expect to receive from their healthcare providers, as well as remind them that they are active partners in their care. I see this as reminding us patients of the important role we play in our care.

How and why was the Charter developed?
A Canadian Arthritis Patient Bill of Rights was drafted in 2001, led by the Arthritis Society, and with input from many arthritis stakeholders. Since 2001 so much has changed! Biologics have changed the landscape of care, inflammatory arthritis is being aggressively treated before joint damage, our population has aged and the healthcare system is close to maxed out.  As well, our society has decreased its attention span - we’re bombarded with messages from different media. Maybe most importantly, we’ve seen a ‘new’ kind of patient emerge - one who’s no longer so patient. We’re much more educated about our illness, and eager to be part of our care.

We saw all of these things as an opportunity to update the Bill of Rights, now called the Charter, and to remind people that they need to play an active role in managing their disease. We’ve created long and short versions of the Charter – one that gets to the point for those of us with really short attention spans (!) and a longer one with more detail.

It’s also an opportunity to remind people that even though we often don’t have control of arthritis, there are some things we can do to feel a bit of control over our lives with it. That may sound like an oversimplification, but I know that I have zero control over my disease, except taking my medication how it’s prescribed, asking my healthcare team questions, and being smart about how I approach my life with arthritis (e.g., when I need a nap, I take it, and when I travel, I figure out how my meds are getting there with me). That’s what I mean about control.

What are the important things CAPA learned through developing the Charter?
The Canadian arthritis stakeholder landscape has a lot of players – patient organizations, a charity that represents people with arthritis, physician and healthcare provider organizations, and an umbrella group, and yes, pharma is a part of that group, too. It was important to get buy-in from all of these organizations. We were also able to leverage these organizations’ outreach capabilities, and even people like you who generously tweeted about our survey to gain feedback and input about our Charter’s first draft. 

There is a strong arthritis community in Canada, and we were wonderfully reminded of this each time we asked for help for support of any kind. Without our stakeholders’ support, we would not have been able to achieve the creation of this Charter.

Was there a particular moment that stood out or was meaningful for you personally?
I was project manager on the Charter since we started on it back in January. At times this felt like ‘the project that would never end,’ but I’m just so pleased with what we’ve been able to achieve with really minimal resources. I think it was the day when I was stuffing envelopes, poster tubes, and sticking address labels on things that I felt what we’ve actually achieved. I hope it’s in my rheumatologist’s office, because if it’s not, he will be asked about it! We’ve developed something that is important, useful, and has input and support from the community. It’s still not going to end, either, because we’d like to see the Charter in places like pharmacies and physio/occupational therapy offices. So I see that as phase 2.

Please tell The Seated View readers about the upcoming Arthritis Alliance of Canada conference in Toronto.
The Arthritis Alliance of Canada is the ‘umbrella’ organization for all arthritis organizations in Canada, raising awareness about arthritis and its burden. It’s a pro-active organization that brings groups together to share best practices across the country. It represents a united front for arthritis, especially when it comes to talking to government and helping policy-makers and decision-makers understand the burden of arthritis on Canadians.

The 2nd annual conference is held in Toronto October 30-November 1, 2014 and it’s a free event. This year, it’s held in conjunction with the Gairdner Awards. For non-science people, these awards can be seen as a prelude to Nobel prizes - many Gairdner winners have gone on to receive Nobel prize recognition for their work. This year’s winners were instrumental in developing the first biologics used to treat people with inflammatory arthritis. They’ll speak at the Alliance conference. You can find more information on the conference here (PDF) and you can register on the Arthritis Alliance website. The audience will include researchers, patients, clinicians, pharma, and all stakeholders. Hopefully some of you will join us! 

Thanks for taking the time to tell everyone about the Charter, Dawn. It's a wonderful thing. I'll be at the conference at least one day - looking forward to it!

Tuesday, September 16, 2014

Island Sunset

Last month, both The Boy and I got a new camera. Naturally, they need to be exercised fully and this was when I looked at my list of adventures. Because yes, I do have a list of exciting longer range excursions for The Boy and I to do before winter hits. I'm organized that way. Mostly, it makes him whimper.

Prominent on the list was heading to the Toronto Islands to take pictures of the sunset over the city. We did some research — because we're both that kind of person — and a nifty app told is where the sun would set and when. Ideal viewing location was Ward's Island. My Mandatory Rest Period got cut short, dinner was a slapdash affair, and then we hurried to catch the ferry. The sun was low, doing all sorts of wonderful things to the clouds and the water.

We had plenty of time to scout the area and enjoyed looking at all the Island cottages on our way. It's a completely different lifestyle and I wanted to live in most of them.

We found the perfect spot just as the Golden Hour started.

It's one thing to plan your adventure so you can be there during the Golden Hour. It's quite another to see exactly why it has that name

As the sun moved lower, everything turned orange, including The Boy and I. Part of the plan was to ask my beloved to photograph my hands with a camera for the Show Us Your Hands! September Picture Project (the theme is work), but I was alarmingly orange in the photo that I resembled one of the cast members on Dancing with the Stars gone amok, so... Well, nevermind.

It was beautiful.

And then, at 7:41 PM, the sun dipped below the top of the skyscrapers. That didn't mean it was the end of the show, though.

We watched the sky slowly darkening and the city gradually turning on the lights

And then, it was full dark. We kept playing with different settings on the cameras, getting different looks. I'm still not quite sure what I did, but somehow I managed to get two completely different views of the city. I'm looking forward to be able to do this on purpose!

I've started talking to The Boy about a winter adventure of seeing the sunrise. He'll need some convincing.

Thursday, September 11, 2014

Eating out with Food Allergies: Do’s and Don’ts for Restaurant Staff

Eating out when you have food allergies is an adventure akin to playing Russian roulette. 

Funnelcake at the fair. Thankfully, no nuts in the booth.

It's not Russian roulette because restaurants don’t try to accommodate you — they do – but because the staff in restaurants have a varying understanding of what food allergies mean. Just for fun, I’ve gathered three examples from recent experiences at restaurants to illustrate my point. If you are a restaurant owner, chef, or server, feel free to use these as educational materials for your colleagues.

Know the Ingredients of the Food
I don’t eat out often, but when I do, I tend to go to one of a few restaurants in my neighbourhood where I’ve found a dish or two that I can eat. One of these dishes is a very yummy calamari that is normally served with a small container of hot sauce and a similar container of garlic mayonnaise.

When I order food, I always tell the server that I’m allergic to eggs and nuts and they let the kitchen know. Despite this, 95% of the time, my order of calamari comes plated with both hot sauce and mayonnaise.

You’d think people working in the food industry would know that mayonnaise contains eggs…

Be Aware of the Nature of Food Allergies
Last month, I had a meeting held in a fairly fancy location. How fancy? It has a dress code of business casual. It is perhaps a sign that I have worked from home for a very long time that I didn’t really know what that meant and had a hard time finding an outfit that qualified.

The meeting included a dinner from a neighbouring equally fancy restaurant. As is usually the case with events that include food, I ate from home. It’s a lot easier and less risky. Upon hearing of my food allergies, the very nice hosts of the meeting talked to the restaurant staff about accommodating me. A lovely woman came to talk to me and we got into a detailed discussion of my allergies to make sure they could accommodate them. There were no nuts listed on the menu, so that was a good sign. I asked about peanuts, as well — I’m not sure I’m allergic to them, but better safe than sorry.

“There are no peanuts in the kitchen,” the lovely woman said, which was greatly encouraging.

“What about the satay sauce?” I asked, having checked on my phone and learned that it is a peanut sauce.

“Oh,” she said, “it’s on the side.”

Apparently she didn’t know about cross contamination and that some people are so allergic they can’t be near certain allergens without risking an anaphylactic reaction.

Controlling Liability? Think outside the Box
I recently attended a conference that included meals. The staff at the location bent over backwards to accommodate me so I could enjoy the food and be safe. Partly because they were very good at customer service and partly because the location had rules prohibiting outside food to control issues of liability.

We discussed bread and pastries and they specified that although they would be very, very careful, they couldn’t guarantee that the bread was safe. No worries, said I, I’ll just bring a couple of slices of bread that I know is safe. This was when I was acquainted with the abovementioned rules.

This was also when I suggested that the risks (and therefore liability) inherent in me eating the bread they made, the safety of which they couldn’t guarantee, was perhaps higher than me bringing in a slice of bread that I knew was safe.

Tuesday, September 09, 2014

Our Hands Can! Community Stories — August 2014: Food

We are experiencing some technical difficulties with the Show Us Your Hands! website and emails. Please bear with us. You can reach Show Us Your Hands! through our Facebook page and on Twitter in the meantime. You can also reach us at suyh14ATgmailDOTcom.

What can your hands do with food? That was the Show Us Your Hands! Picture Project theme for August and it really hit a chord in the community. We received a lot of terrific submissions on our Facebook page. Our Advisory Council reviewed them all and selected their favorite to win the prize for August, a copy of Kim P. Miller’s terrific book Living with Juvenile Arthritis: A Parent’s Guide. See who won later in this post.

Here is a small selection of the August submissions:

Kelly gave us a two-for-one submission of her and her husband’s hands holding coffee cups. She said “Coffee is surely part of the food pyramid in my life! This is a picture of my husband and I, who both live with autoimmune arthritis, sharing a walk on our anniversary!” We agree completely, Kelly. Coffee is essential.

When Martine posted her submission, she also gave us a good tip. When writing the story to go along with her photo, she explained “I just finished preparing my yearly garlic paste - I grow my own organic garlic, and preoare a paste with olive oil. I freeze it in little quantities and voilĂ ! Ready for all culinary experiences, all year-round.” Great idea, Martine!

Kim posted a terrific shot of her hands peeling shrimp for special occasion. This was a very important step in making shrimp Alfredo, the dish her son had requested for his birthday dinner. Happy birthday to your son, Kim!

This month, we also wanted to show you the face (and hands) of one of our Advisory Council. Andrea Sarullo posted this creative collage of heard eating sushi, one of her favorite foods.

And the winner of the prize for August is AnnLouise! She said “This is my croquembouche - the first time I've been able to bake since being hit hard and diagnosed earlier this summer, just a week after my 20th birthday.” That’s is seriously impressive creation, AnnLouise! Congratulations on being this month’s winner! Send us an email at suyh14ATgmailDOTcom to get your prize.

Do you want to go participate in the Picture Project? The theme for September is “work.” This isn’t just about paid work, but also anything you do as a volunteer or in your home (yardwork and housework counts!). Here’s what you do:

Take a photo of your hands at work, doing anything productive. Post it on the Show Us Your Hands! Facebook page and tag your post with #showusyourhands.

And that’s all! Submit as many photos as you’d like. At the end of the month, our Advisory Council will choose their favorite. The September prize is a signed copy of Danea Horn’s wonderful book Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness. Thank you for donating your book to the Picture Project, Danea!

We also should let you know that by submitting a photo, you give Show Us Your Hands! permission to use the photo and your name in our community programs, such as the monthly Our Hands Can! Community Stories.

To see the other entries in our Picture Project, hop on over to the Show Us Your Hands! Facebook page. While you’re there, why not submit a photo yourself?