GUEST POST BY NEGIN NIA
The pandemic has spurred an outpouring by patients about their frustrating healthcare experiences. We’ve gotten accustomed to hearing about misdiagnosis, late diagnostics, health professional shortages, long waits in emergency departments and outright dismissal by medical professionals.
These escalating problems have led to more patients aggressively and proactively advocating on their own behalf. Women have especially grown accustomed to being their own advocates. While it’s positive that so many are advocating for the quality and safe care they deserve, it is not as simple for everyone.
Jennifer, a military mother from Ottawa, became her own advocate when the system pushed her to the edge. She’s dealt with migraines, shingles and other chronic conditions that have become worse because of lack of care or misdiagnosis.
“I honestly feel like if I wasn’t my own advocate I would be completely done for … I have not been able to work in years,” she said.
Doctors in the past had taken her pain seriously and were well-versed in women’s health issues. But, when doctors she trusted left their practices, she had to become her own Dr. Google.
“They don’t want you to be a Google doctor, but patients are truly forced to be their own advocate and also educate themselves … now I go into my appointments with a list of questions and I tick the box for every single symptom that I have.”
Ramya Prabhakar, a women’s health physiotherapist from Surrey, has dealt with a lack of quality healthcare for over seven years. She recalls two major incidents that required her to become her own self-advocate.
In 2014, she went to the hospital for a kidney stone procedure. She was in so much pain but was kept at the hospital for five days without proper testing or examination. The nurse gave her the wrong medication which led to multiple complications including slurred speech and bleeding. Five years later, she went to the same hospital because she was pregnant and bleeding. The nurse told her to take a seat and that she was “only one of the 20 women waiting with the same complaint.” A few hours later, she started to develop severe fever and chills.
“The baby was gone, but at this point, I had to save myself,” Prabhakar said.
Prabhakar recognizes that being a healthcare provider herself has helped because she is familiar with medical terminology and symptoms. Still, she was shocked by what had happened to her.
“My only fear is someone who does not have this expertise, and is required to become their own expert … something like this could kill you.”
Dr. Videsh Kapoor, a family physician in Vancouver and a Clinical Assistant Professor at the UBC Department of Family Practice, said that certain barriers – language, race, socioeconomic status, disabilities and so on – may reduce how much information one may clearly hear and receive in a medical setting.
The 2019 BC Women’s Health Foundation report, In her Words, also highlighted how newcomer immigrant women experience a decline in health over time because they do not know how to access services. The report also showed that those speaking English as a second language may not have as much support.
Kapoor said it is important to prepare for when you might need help in a medical setting.
“The way to do that is to advocate and say ‘I want to be heard, and these are the things that I might need, I might need to translater, or I might need more time… ‘”
There might be things that you are going to need in advance and as an advocate for yourself, one thing you can do is prepare. Hospitals right now do have a fairly diverse population of workers. That might not be the case in the rural communities as much but in cities, there are some hospitals that have patient advocates and translators available,” she said.
Kapoor said besides people with language barriers, those with mental health conditions, lower socioeconomic status, the LGBTQ+ community, and people with disabilities may face the most challenges and also be stigmatized the most.
“When the system is stressed, a lot of stuff goes by the wayside but we need to think of ways to mitigate so people, and especially these groups, don’t fall through the cracks.”
Negin Nia is a multimedia journalist from B.C. reporting on the intersections of health, social change and community. Her articles have appeared in The Globe and Mail, CBC News, and the Healthy Debate. Her personal essay about her experiences with the medical system can be read here.
Follow her on Twitter here: @_neginnia
I am a retired MD. Have had recent personal experiences with hospital system including two days ago. I think it’s a mistake to focus on the marginalized as this will shift the focus away from dealing with the true cause which is the high pressure, lack of time and resources which the clinical staff labour under. Of course this will affect marginalized patients more but it truly results in impaired communication with most patients. What we don’t need so much is enhanced immigrant/ ESL/ LGTBQ resources which will silo care: we need more staff with more time. They do the best they can!