'Life-saving conversations': How to advocate for yourself in the health-care system

In the midst of what Manitoba's health minister has called "the most significant change in the health-care system in a generation," a pair of experts on patient advocacy have advice on how to ensure you're getting the best care you can.

"Patient advocacy, or as we like to call it, self-advocacyis invaluable anytime," said Laurie Thompson, executive director of the Manitoba Institute for Patient Safety.

"Possibly in particular when there's changes to the system that are making people just a little uncomfortable with where they should go and what they should do."

Next week, the emergency room at Winnipeg's Victoria General Hospital will become an urgent care centre and Misericordia's urgent care centre will shut down the first big moves to realize a dramatic change to the city's health-care system announced earlier this year by the province and the Winnipeg Regional Health Authority.

Under the changes, Health Sciences Centre, St. Boniface Hospital and Grace Hospital will become the primary hospitals offering emergency services in Winnipeg.

The emergency room at Seven Oaks General Hospital will also be converted to an urgent care centre in 2018. Concordia Hospital's emergency room will close altogether next year.

With changes coming to where many Manitobans will access their health care,CBC News spoke to Thompson and another expert to get their tips on how to advocate for yourself in the health-care system.

Recruit an advocate

Thompson said the most important advice she can provide is to find an advocate to accompany you when you meet with your health-care providers, and to do it before you actually need one.

Sandi Kossey, senior director of strategic partnerships and priorities for the Canadian Patient Safety Institute, echoed thatsuggestion.

She said it's important to have a friend or family member "asa support, certainly, but also somebody who can remember, and another pair of ears to listen to some ofthe conversation, [who] can take notes or can even ask some of the questions on behalf of the patient."

Your advocate should be someone you trust and preferably someone you've known for a while, Thompson said. Neighbours, parents, children, siblings or friends are all options to consider.

A successful candidate should be someone you think is a good listener but who you also trust to speak up with questions or concerns, she added.

• My Patient Advocate Agreement: Manitoba Institute for Patient Safety

When you've identified the person you want to be your advocate, you need to sit down and have an honest conversation about your expectations, Thompson said.

She recommended using a downloadable patient safety agreement, accessible on the Manitoba institute's website, to guide the conversation.

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Come prepared

Self-advocacy can start before you walk into the doctor's office, with making a list of your health concerns and questions to take with you when the time comes, Thompson said.

"It's important that people are informed, and they can be informed before they go into an encounter with their health provider by making a list of their concerns," she said.

The Manitoba institute has online forms you can use to help do that, she said, and your advocate can be part of the process, too.

• S.A.F.E. Toolkit: Manitoba Institute for Patient Safety

If you don't have time to write out a full list, Thompson said it's also helpful to simply identify your single biggest concern.

Bring information

In addition to your list of questions and concerns, Kossey said you should walk into the hospital with a record of your personal health information.

"You know your health best. You know if any medications have been changed, if you've had any symptoms, if you've had any other referrals or seen any specialists," Kossey said.

"It's really important that you have that personal information with you so that you can share it."

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Whether it's recorded digitally on your phone or handwritten on paper, Kossey said it's useful to have the information in written form to make sure you don't forget anything in the moment.

"Something that maybe a care provider asks you, you may not think is relevant or related, but sometimes those details will help improve your care and the safety of your care," she said.

Ask the right questions

The mantra of the Canadian Patient Safety Instituteis "ask, listen, talk," Kossey said.

"That's really important encouraging patients and their health-care providers to have important conversations about their health and about keeping themselves safe during their care," she said.

Kossey and Thompson both stressed the importance of asking the right questions when you're with your health-care provider.

The Manitoba Institute for Patient Safety has prescribed three general questions through its It's Safe to Ask program that will give a place to start:

• What is my health problem?
• What do I need to do?
• Why do I need to do this?

"Those three questions can really set up a conversation and then it goes from there," Thompson said.

The Canadian institute has also developed its own list of questions to ask that are specific to medication, Kossey added.

"Both patients and health-care providers can use them as a basis for having conversations, life-saving conversations, about safely using medication," she said.

Those questions are:

• Have any medications been added, stopped or changed, and why?
• What medications do I need to keep taking, and why?
• How do I take my medications, and for how long?
• How will I know if my medication is working, and what side effects do I watch for?
• Do I need any tests and when do I book my next visit?

Follow up

After your appointment, Thompson said it's good to get into the habit of writing down what you can about the meeting and any information about the next one.

"When you come out of a health-care interaction, be it the pharmacy or the emergency or wherever, write down what you think you heard," she said.

"Write down your discharge instructions. You may, when you get home, inreviewing that, have other questions. So write down those questions."

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If you want those questions answered before your next appointment, Thompson said you should feel empowered to calland ask for more clarity.

If your question concerns medication, Thompson recommended calling your pharmacist she's done it multiple times.

If the question is better posed to a doctor, she suggested calling the office and leaving a message with your physician. You may have to wait slightly longer to get an answer, but many physicians check messages at the end of the day, she said.

You can find more resources about patient advocacy online through the Manitoba Institute for Patient Safety and the Canadian Patient Safety Institute.