Imagine you’ve just been diagnosed as HIV-positive. Things may seem overwhelming but amid the swirling emotions you know you need to stay focused enough to find a doctor who can help you with all the coming life adjustments.
You may already have a doctor, but they may not be prepared to deal with your newly complicated health status. You may be researching various clinics and specialists in your area, hoping to find a little peace of mind going forward. But finding doctors can be like dating: You have no idea how a relationship will develop until you take a dive, headfirst, into the icy waters of unpredictability and long-term healthcare.
Consider John. “I got my diagnosis at a walk-in-clinic, where I think the doctor was just waiting to give this prepared speech about how nothing is going to change, how I’m still gonna live a completely normal life. I just sat there and blinked. Went home, went online and started reading. Within an hour I was terrified beyond belief.”
For many the struggle with the medical system begins at ground zero. “There’s no question of some pretty awful stories of how a diagnosis was communicated by a physician or healthcare practitioner who just didn’t have the knowledge or sensitivity to do it well and understand the significance of that kind of diagnosis,” says Toronto People with AIDS Foundation (TPWAF) executive director Murray Jose.
John got his first doctor recommendation through his internet research. “I ended up chatting with a guy online who pointed me at Maple Leaf [Medical Clinic] and they took me on immediately when I told them I was newly diagnosed. I was on cloud nine.”
But, as with the ups and downs of dating, sometimes a new relationship with a doctor doesn’t work out the way we hope.
John couldn’t get comfortable with his new doctor and after several misunderstandings arose he became frustrated. John tried to switch doctors within the clinic, only to discover he was no longer welcome there at all. (No one from the Maple Leaf Medical Clinic responded to multiple requests for an interview to discuss John’s situation.)
What could John have done to prevent this from happening? How will he find a new doctor and clinic he is satisfied with? Is there any recourse for him to take in the meantime?
“It’s hard in some of the settings,” says Jose. “There is not necessarily somebody who is managing the clinic with any authority to go back to the physician and say, ‘You know what? You did this incorrectly,’ or ‘This has come back to us and your actions were interpreted this way. Let’s talk about how we make sure that patients more clearly understand your intent next time.’
“Clinics tend to be physician partnerships… so that can make it difficult to know how to raise a concern,” says Jose. “If you’re looking at somewhere like St Mike’s [Hospital], those have structures where there is a hierarchy where you can take a complaint forward… and be heard.”
Jose, who has worked in the HIV/AIDS field since 1994, notes that different doctors have different styles and that it can be a matter of shopping around until you find one who’s right for you.
“Certainly there will be different approaches, and sometimes it’s clinic-wide approaches and other times it’s physician approaches around how much testing, how much secondary services people are referred to. And it doesn’t necessarily imply better or worse care, or better or worse results in health.”
In other words one person’s Medusa might be another’s Adonis. Take Dave, for example, who saw the same doctor as John, but with very different results.
“I knew I needed a doctor who would know what to do and help me through this,” says Dave. “Luckily the day after I tested poz I went to ACT [the AIDS Committee of Toronto] and to PWA, to register with them, to talk to a counsellor, pulling on the resources of both wonderful agencies. When I told the wonderful people at ACT that I had just tested poz the day before they jumped into action and set me up with a counsellor for the following day. Man, was she a godsend…. She had a list of doctors that specialize in HIV, and it is from that list that I found my doctor — a wonderful doctor, as is the rest of the team at Maple Leaf.”
But if he hadn’t been happy with the recommendation Dave says he would’ve kept looking. “If a doctor has a problem with the gay thing then move on,” he says. “If a doctor has a problem with the HIV thing then move on.”
ACT’s communications coordinator Andrew Brett says it’s okay to try out a few doctors before settling into a long-term relationship.
“We recommend that you ask for a 45-minute appointment with three or four doctors before you make your decision,” he says. “Have a list of questions prepared to ask the doctor, and you may want to consider bringing along a friend to the appointment. Ask the doctor for a trial period before committing to them.”
Although referrals and recommendations are a great way to find a doctor Jose notes that newly diagnosed may not have the connections to know who to ask.
“[It’s] not easy if you are newly diagnosed,” says Jose. “You are not necessarily wanting to jump into social situations with other people with HIV/AIDS, but as you start to get connected with other peers who are living with HIV and start to hear some of their stories… it’s a good way to get anecdotal information about who might be good for you. And someone who is good for me, might be the total wrong choice for someone else.”
Finding the right fit — a doctor you click with — is essential to the mental state of newly diagnosed patients, says Jose.
“Definitely one of the most important things in the relationship is the relationship itself: How you interact with your physician and how you can trust them, how confident you are that they’re taking care of your health…. So helping individuals to figure out what’s the relationship they want with their doctor is essential,” he says. “Some want their physician to just be confident and tell them what to do; others want to be involved, want to understand and want to actually make the decisions with the physicians.”
“Having an open and honest relationship with your doctor can be the most important thing for your health,” agrees Brett. “What that means will depend on what you need in a doctor to make your relationship work. No one is obligated to stay with a physician they’re uncomfortable with.”
Jose adds that the right doctor may be the GP you already have. “You want to make sure you can have a physician that… you’re going to be confident in and if it’s a GP that doesn’t have HIV-experience, you aren’t necessarily worse off,” says Jose, adding that there are support systems specifically set up for doctors without experience handling HIV to help them give their patients the right care.
Like finding love, finding the perfect doctor is easier said than done. The search — for all Canadians, let alone those with specific health issues — is filled with daunting reports of shortages.
“It’s difficult to find medical care anywhere, but specific to HIV/AIDS is an area that continues to have its own challenges,” says Jose, “so to some degree it’s a reality check around making sure you have access to a GP.”
Jose notes the situation is much worse for HIV-positive people living elsewhere in the province. “It’s very hard to find healthcare outside of the city…. In Toronto it’s safe to say that more of the general practitioners who may not be familiar with HIV/AIDS but are at least aware enough to have some of the sensitivity and at least know where to turn to get the knowledge. I don’t think that’s as present in the rural communities.”
For those finding it difficult to navigate the medical system TPWAF has a treatment access coordinator whose job is to facilitate access — everything from referrals for medical care to access to medication through the Trillium Drug Program. One of the tools the coordinator uses is a list of physicians accepting new patients.
“At this point in time a person can expect to see a doctor within a couple of weeks,” says Brett. “This can change daily depending on the physician’s patient load.”
In the end finding the right doctor requires the same tenacity as dating. There is someone out there who’s right for you and it is essential to avoid becoming discouraged and to keep looking until you’re satisfied.
“Don’t panic,” says Dave. “Always remember this: HIV is only a part of you… it’s not you. Remember it’s your health and now more than ever you have to find someone who you can talk to and not be afraid saying things to. If you don’t feel that way with your doctor then there is no harm looking for another.”
“You’re not a statistic,” says John. “Screw the numbers. This is about you and you need to stay focused and not cut corners, aim for the best because you deserve it and don’t settle.”