#TalkOverRA – Why It’s Important To Advocate For Yourself

About #TalkOverRA

#TalkOverRA encourages Canadians living with Rheumatoid Arthritis to have more meaningful conversations with their health care providers to discuss resources, new treatment targets, and their own personal goals that can support better quality of life for Canadians living with RA.

Why is this important? Well here’s something to take into consideration… 

Rheumatoid Arthritis Facts in Canada

  • The onset of rheumatoid arthritis usually occurs between 30 to 50 years of age – when people are in their prime working years.
  • Up to one-third of patients can be work-disabled within two years of disease onset, if the disease is not properly managed.
  • RA comes with an estimated total annual economic impact of $2 billion in direct healthcare costs—which includes doctor visits and hospitalization costs—and over $3 billion in wage-based productivity costs in Canada.  

Why is it Important to Talk About treatment Goals With a Rheumatologist? 

While Rheumatoid Arthritis is an incurable disease, remission is where disease activity is at the lowest and the impact of the disease on daily life becomes more tolerable. I think that is every patient’s goal to achieve and definitely my goal I strive to achieve on  daily basis. Your rheumatologist can help you achieve that goal but it’s definitely a journey and takes a lot of work but worth it.  I’ve partnered with the #TalkOverRA campaign and created a series of blog posts to help you with having more meaningful conversations with your rheumatologist. 

Why is it Important to Advocate for Yourself? 

It’s important to advocate for yourself so you can achieve your goals with treatment, to speak up when something is not working for you and  to ask the questions that matter to you. If I didn’t speak up about what I was experiencing I wouldn’t be here today where I am now – emotionally and physically. 

Learning to Advocate For Yourself – What to Do When You Don’t Feel Heard

Is it time for a second opinion or transfer of care? How can someone get a second opinion? What can a patient do if they feel their doctor isn’t right for them or listening?

To get a better understanding of this topic I spoke with  Dr. Diane Lacaille, rheumatologist in Richmond BC and Scientific Director of Arthritis Research Canada about what to do if a patient wants second or opinion or transfer of care. You can view me interviewing her daughter and her at the 2020 Canadian Rheumatology Conference here.

First, Dr. Lacaille explains the difference of a second opinion and transfer of care and how to get either. ” A ‘second opinion’ is when you may have a very complicated case or someone’s who is not responding to our usual treatment or has a very complicated course for whatever reason, and you just say “you know, I have a good relationship with you. I am happy with my relationship with my rheum but things are not clear and what if we just had another person have another look at this?” They would be looking at it with an outsider’s eye, which often is good because it is a different perspective to look at this and see whether they have any other ideas on either the management of the diagnosis. That is a ‘second opinion.

Or it might be a second opinion where you may have RA but you might be getting a complication and there might be another rheum who specializes specifically in that manifestation (some specialize in ultrasounds, back pain, etc).  That is a ‘second opinion.

Most rheums will be okay with a second opinion and you’ll get a better second opinion if the files from your rheum are transferred to that other person because they will see the bigger picture better, as opposed to just getting a snapshot and not knowing the history. The rheum might ask the relevant question of that other person and provide the information that’s necessary to really get a good second opinion.

I think patients are often afraid of asking for a second opinion, and most of us are comfortable with it. Some of our colleagues specialize in certain specific things and we are quite happy to use them for those specific things. That is how we work as a community.

A ‘transfer of care’ is if you feel the relationship is not working and you want to transfer care, that’s okay. It is important that you have a good fit with your doctor. It doesn’t mean that the doctor is not a good doctor. It’s really about that doctor/patient relationship and needs to be a good fit. In both cases you are going to need a referral to another rheum by your family doctor but you need to approach it differently.

When you want to transfer care, you do need to approach your family doctor. It’s up to you and it depends on the relationship with the rheum. You might want to first talk to your rheum if you feel like you are not being heard. It is a little like any relationship. Before you end a relationship, you might try to mend it. So you might want to first talk to your rheum and say “I am not feeling fully heard here.” It may be a communication issue. Your rheum is not communicating with you in a way that meets your needs and once you have talked about it, you might be able to change that. But if it does not change, or you are not comfortable even approaching that, then you might want to directly just switch rheums. That is a discussion you need to have with your family doctor and explain why you feel it is not a good fit and that you are not comfortable with the rheum and that you would like to transfer care to somebody else.”

How can patients become their own advocates today?

#TalkOverRA has created a printable PDF to help guide you get the conversation started with your rheumatologist about your treatment goal. Visit the #TalkOverRA website to find the printable PDF and get talking to your rheumatologist today. 

Are you ready to #TalkOverYourRA?

Next part of the #TalkOverRA blog post series to help my other Rheum-Mates have more meaningful conversations: #TalkOverRA – When Should You See Your Rheumatologist. 

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