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News - February 2017

A Day in the Life of a Patient Advocate 

By: Annette McKinnon

I teamed up with Canadian Spondylitis Association President, Michael Mallinson, for a visit to our Member of Parliament Nathaniel Erskine-Smith. We are in the same riding and are both acquainted with him. We did not want to wait until too late in the summer because he and his wife are expecting a baby in mid-August.

We presented the PowerPoint slides that the Arthritis Alliance of Canada (AAC) prepared, outlining the role of the Arthritis Alliance of Canada (AAC) and talking about the current burden of arthritis in Canada. This involves the numbers of patients affected now and in the future, the direct health care costs for Osteoarthritis and Rheumatoid Arthritis, as well as the loss of productivity which was over $20.5 billion in 2010.

The AAC did a survey about the way patients feel about these issues, so we were able to lay out public opinion along with the facts and figures. MP Erskine-Smith was very interested in the facts and figures and took notes. He mentioned that his mother has hip osteoarthritis, so he has personal knowledge of the effects of OA.

We were talking about two main points – homecare for those with chronic illness and help and accommodation for people to remain employed. Nate asked us "What do flexible work arrangements look like?" He wanted to know what was being done in this area in other countries, and mentioned the National Disabilities Act and the protections that disabled people do have under the act.

He wondered about specific legislative changes to accomplish improved homecare and to keep people with arthritis employed. He would like figures on costing and coverage for work arrangements and an idea of the costing for homecare. One thing he mentioned was his experience in meeting people who "want you to care" and then his response in considering what can be done.

Overall we had a pleasant and productive conversation and I felt that Nate really listened to us and will follow up when he has more figures from the AAC.

Cassie & Friends Society holds largest JIA event in Canada 

By: Jennifer Thompson

In October 2016, Cassie & Friends welcomed over 350 kids, parents, caregivers, siblings, healthcare professionals and volunteers to their 8th annual Family Day conference for Juvenile Arthritis and other Rheumatic Diseases - the largest such event ever held in Canada.

The 2016 conference theme was "Hand in Hand," celebrating C&Fs commitment to provide kids and families with the chance to connect, learn and have fun in a supportive environment. Kids and teens enjoyed a fun-filled day of supervised activities & outings, while parents participated in educational and social sessions lead by healthcare professionals. Topics included presentations on medications, anxiety, physical activity and sleep issues.

Parents who attend Family Day say it's a great place to meet other affected families, an important source of quality information and that it improves their ability to care for the child. The event was attended by the entire Pediatric Rheumatology team from BC Children's Hospital as well as researchers form the BC Children's Hospital Research Institute - a true "hand-in-hand" partnership to ensure children and families affected by arthritis receive the best possible care and outcomes.

Next year's event will take place on Saturday, October 14, 2017 at a soon to be determined location in the Vancouver-area. Families from BC and beyond are welcome to attend. To learn more about the event and what it means to families, you can check out their 2016 Family Day video here.

For more information about Cassie & Friends Society, please visit www.cassieandfriends.ca.

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