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NEWS - JULY 2016

A Day in the Life of a Patient Advocate

By: Linda Wilhelm

A good percentage of New Brunswick Federal Ridings cover a large geographical area and are rural in nature and Fundy Royal and New Brunswick (NB) Southwest are no different. I live on the far boundary of NB Southwest, closer in proximity to Fundy Royal. Fundy Royal is also the riding that I was the Liberal candidate in the 2011 election. If not for a severe flare of my Rheumatoid Arthritis (RA), I very likely would have run again in 2015. Alaina Lockhart took up the challenge and despite rural NB being historically Conservative - she won - although it was one of the last ridings to be declared on election night.

I know Alaina through our previous community activities and since her election in October she has been working tirelessly for our region by being available to her constituents (and in my case, a neighbouring constituent). I met with her and her assistant Sherry on February 29, 2016 in her constituency office in Hampton, NB about ten minutes from my home. Alaina is very aware that I have severe RA although I brought some information about arthritis that BC CAPA Board Member Don Mohoruk had pulled together. The purpose of the meeting was to introduce her to some of the issues facing people living with arthritis such as: 

  • the lack of a national, comprehensive pharmacare program to fill in the gaps for those having difficulty accessing necessary medications,
  • the insufficient research dollars given to arthritis compared to other diseases, and
  • the need for the federal government to make patient engagement a priority.

 

I noted how the Conservative government dissolved Health Canada’s Office of Consumer and Public Involvement (OCAPI) which provided a focal point for patient engagement in Health Canada’s day to day activities. We discussed the importance of patient engagement and the gap that exists without OCAPI.  Since our meeting, I have mentioned this point a few times on her social media account. I have yet to meet with my Member of Parliament, Karen Ludwig, but I have been in touch with her office and I hope to meet with her in the near future.

I encourage CAPA Members to contact their own MP to Make Your Voice Heard as they were elected to serve you and you need to let them know what your concerns are.

This is the second article in a series about CAPA members approaching their local Members of Parliament (MP) as part of a campaign we launched to Make Your Voice Heard. If you have approached your local MP, e-mail us and tell us how it went!

 

Going Global with the Arthritis Patient Charter @ EULAR

By: Dawn Richards

On June 8, 2016, I made a presentation called "Development & Use of a Canadian Arthritis Patient Charter" at the European League Against Rheumatism (EULAR) Conference in London, England. I was part of a session called Patient Organizations in Action, as part of the track of the conference hosted by People with Arthritis and Rheumatism (PARE). EULAR is one of the largest rheumatology conferences in the world with more than 14,000 participants this year. 

The presentation summarized how CAPA worked with stakeholders to develop a Canadian Arthritis Patient Charter as well as the results of a survey.  You may remember responding to a survey that CAPA produced about the Patient Charter in May of this year. The survey sought your opinion on your awareness of the Charter and how you use or think you might use it in your own care. We had 72 responses to our survey, about half of you were aware of the Charter through CAPA, the Arthritis Society, or seeing it at your rheumatologist's office. Those of you who feel the Charter helps your care, indicated it was because the Charter has prompted you to:

  • ask your healthcare providers about your care,
  • look up information on-line or in other resources, and
  • take a more active role in managing your health.

Those of you who were unsure of how the Charter could help your care felt this was because you were not aware of it, were unsure of its purpose or you felt you received good care. Feedback was provided that the statements in the Charter were well-crafted.

Based on this information, we are looking in to ways we can continue to raise awareness of the Charter. Like you, we feel it's an empowering document, rather than one that is meant to point out any shortcomings. CAPA does use the Charter in its advocacy-based activities with politicians and policy-makers and will continue to do so.

  

Updating the Treatment Guidelines for Rheumatoid Arthritis

By: Glen Hazelwood & Laurie Proulx

The Canadian Rheumatology Association is updating their recommendations for the treatment of rheumatoid arthritis. The recommendations will be updated to include the best evidence available since the development of the guidelines in 2011/2012 but will include an important new element – the consideration of patient preferences. As patients know all too well, treatment options require a trade-off of benefits, risks, dosing options and other factors. The updated treatment recommendations will incorporate these patient considerations when choosing a treatment option.

The project has successfully secured funding through a grant from the Canadian Initiative for Outcomes in Rheumatology Care (CIORA). CAPA is a proud supporter of the project and will be involved throughout the project to ensure the perspective of people of living with arthritis is fully considered. We also plan to assist in the development and distribution of a survey to ensure we hear from the larger community of people living with rheumatoid arthritis.

If you want to receive updates on the progress of this project and stay informed of future opportunities, please send an e-mail to the project coordinator Pauline Hull (pauline.hull@ucalgary.ca) and the CAPA Board of Directors at contact@arthritispatient.ca.

 

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