Navigating Healthcare: Appointment Strategies to Access Care

Intentional Sharing

• We can be conscious about what and how much we choose to share with practitioners. Here is how one person worked through this challenge.
  • “At some point, I realized I don’t owe them that explanation [about my gender]. Now, I will only talk about it if it is relevant to the treatment I am receiving. Otherwise, I just let them be uncomfortable. I’ve learned that I need to protect my own comfort before I try to protect the comfort of providers. I’m not going to be mean to them. There’s a point, where you have to think about what you need from these people because it’s supposed to be healthcare for you.

Navigating Discomfort

• If we are uncomfortable answering a practitioner’s question, we can consider:
  • Asking for more time (e.g. I’d like some time before I answer.)
  • Declining (e.g. I’m not comfortable answering that.)
  • Asking about the relevancy of the question (e.g. Do I need to answer? Can you share why that is relevant for my care today?)
  • Asking about the impacts of your answer (e.g. How might my answer impact my treatment? What are the legal implications involved?)

Checking in with Ourselves

• We can take a moment during our appointments to check in with ourselves. If we are comfortable doing so, we can consider communicating our needs and experience with our practitioners.

Support

• Many of us find it helpful to have someone we know in the waiting room or with us during the appointment. This may be a friend, family member, trusted nurse, etc. Here is what some folks shared with us about this form of support:
  • “Bring someone you trust with you. It feels safe. Safety and support, knowing that I’m not doing this alone. Again, really going back to the community.”

Asking Questions

• Some of us also find it helpful to ask questions. Here’s how one person described this:
  • "With questions, you can get to know how much the doctor knows. When you ask more questions, it takes the heat off of you.”

Communicating our Needs

• Advocating for ourselves takes time, energy, and practice. Many of us struggle to self-advocate especially in the context of healthcare and power imbalances. Here are some options we can explore to communicate our needs.
  • “I brought a list of questions and I want to read it.”
  • “Having time to think helps me remember.”
  • “My pronouns are ___. Can you write that down on my chart?”
  • “Can you slow down?”
  • “I understand you have a busy schedule. I still have unanswered questions.”
  • “I want to know about all of the side effects of this treatment before I decide.”
  • “I want to know what all of my treatment options are.”
  • “It’s important to me to be able to bring a friend to my appointments.”
  • “Last time I was here, we focused a lot on _. I find it more helpful to focus on _ instead.”
  • “I’m going to take some time to make my decision and I will let you know.”

Communicating our Discomfort

• Here are some options we can explore to communicate our discomfort.
  • “No.”
  • “I’m not ready to talk about that.”
  • “That isn’t a good fit for me.”
  • “I’m not comfortable with that option. What are alternatives?”
  • “I’ve tried that before and I didn’t like it. What else can I try?”
  • “I’m not sure if I’m doing this right. Can you explain it again or show me?”
  • “Please stop using ___ pronouns. I use ___ pronouns.”
  • “What are my rights as a patient?”

Requesting Documentation 

• If doctors are dismissing our concerns, we can request that they document this in our file. Here is what one youth shared with us about this approach:
  • “This is something that is being in discussion around disability politics and fatphobia right now. As fat people, we have a lot of our concerns dismissed, especially if we are presenting more femininely, racialized, etc. This is a tactic I learned that when this is happening, this is a great way. They can’t actually dismiss you. But when they do, actually putting it into your file means that this is their professional take on this. And they have to explain why they didn’t do this thing. The problem is though, you can say this, but they might not do it.”

Code-Switching

• Some of us find that code-switching (changing how we speak, act, and/or dress) makes it more likely for doctors to listen to us. Here’s what one person shared with us about code-switching:
  • “When you’re marginalized, you need to make things palatable, unfortunately, for doctors to take you seriously. Sometimes, you even have to learn the right way to say it so you don’t offend their sensitivities.”

Declining Care & Changing Practitioners

• We may feel pressure to continue care, even when services are not affirming. In some cases, we might want to decline care or change practitioners. Here are some phrases we can use if we can decline care:
  • “This isn’t working for me. I want to book with Dr. X instead.”
  • “I would like to change practitioners.”
  • “I don’t think we’re a good fit. I’d like to book with someone else.”
  • “I don’t want these options. I’m deciding not to continue care.”

Trusted Others

• If we are able to, we can consider asking a trusted person to come with us to our appointment. We can also consider asking them to take an active role. This can look like having them read out any questions we may have or advocating with us if practitioners dismiss our concerns. Here is what one person shared with us about having someone with them:
  • “It’s nice to have someone there because it’s calming. I also feel stronger in my voice. If somebody else is there to witness the healthcare provider’s interaction with me, and I’m advocating for my needs, I feel that I’m a lot less likely to be brushed off or to have the healthcare professional argue with me or try and tell me differently because someone is there witnessing.”

Patient Solidarity

• In some cases, we have found advocacy support with other patients. Here are one person’s experiences with patient solidarity in a psychiatric ward.
  • “I went in when I was 17 the first time, which is younger than is even supposed to be allowed in any of these wards. And so many people took me under their wing and were like ‘Okay, we’re all kind of fucked up here. But we can all protect each other.’ It really changed everything.”

Community Support

• As we move through healthcare systems, other patients may need and ask us for support. While healthcare systems are responsible for providing care, we also recognize that we may want to and benefit from supporting each other. Here are some examples of community support one person shared while at a psychiatric ward. 
  • This person spoke about finding ways to help others get access to the outdoors, culturally relevant care, and how they provided Mandarin translation for another patient. They also spoke about patients creating systems to trade food, starting yoga and beading classes, and sharing movies and snacks with other patients.
  • “I really saw in the ward how we could all help each other while dealing with all these problems that got us there. We were still capable of showing each other care, even though we were dealing with other things...The first few times I went into the ward, I had no idea what was going. The way that I figured out what was going on was by talking to other people, not doctors and nurses because they don’t even have the time. I ended up doing that quite a bit for people because I was staying there for so long. Patients would come in and they were scared. They didn’t know what their rights were or what they could expect- which is very little. It felt gratifying for me to be able to explain the situation. ‘This is when you can say no, this is not appropriate. What you can expect when you’re certified.’”

It can be challenging to know if we feel safe around our practitioners, especially when we have not had many or any previous experiences of this. Here are some questions we can ask ourselves to explore our experiences.

Interactions

• What about their tone, body language, and personality is inviting or makes me uncomfortable?
• How do they respect my physical space?
• Do they ask for and use my name and pronouns?

• Do they ask and inform me before they do something?
• Do they validate my concerns?
• Do they respect my decisions?
• Do I feel judgment when discussing certain topics?
• Do I feel rushed, or do they spend the time to get to understand me?
• Do they share all of the options available for treatments?
• Do I feel pressured to make certain decisions about treatment?
• Can they explain concepts in an easily understandable way?
• Do they ask if I have any questions?
• Do they take notes and am can I ask to access them?
• What is my gut feeling telling me about our dynamic?
• How does this dynamic compare to other experiences with practitioners?
• Are they clear about what forms of insurance they accept or reject?

Physical space

• What kinds of décor is in this space?
• Do they have any stickers or brochures that might indicate safety? (e.g. pride stickers)
• How easily accessible is the exit?
• Are there other practitioners in this space?
• Do they have harm reduction supplies available (e.g. Narcan kits, free safer sex, injection, and smoking supplies)

Practitioner identity, experiences, and values

• Do they share any of their identities or experiences on their website, in-person, etc?
• Do we share any lived experiences?
• What experiences practicing or serving in the community do they have?
• Have they shared their approaches to practicing (e.g. anti-oppressive, harm reduction)?
• How comfortable are they discussing systemic harm and systems of oppression?
• Do they acknowledge the power dynamics in patient-practitioner relationships?
• Do they initiate conversations about feedback and accountability?
• How does this practitioner incorporate holistic and de-colonial understandings of health?
• What channels for individual and community accountability are available to me?

Other sources of information

• What experiences have other folks in the community (e.g. friends, family, peers, Elders) had with this practitioner?
• Are there online reviews (e.g. Google, Reddit) that I can find for this practitioner?