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Avis Favaro

How far do you have to go for healthcare? Down the street? To a hospital in another town? How about to an entirely different province?

We’re going to hear about the personal costs of going the distance for healthcare. With an important new report by the Canadian Institute for ºìÁì½í¹Ï±¨ Information, it shows that 1 in 11 Canadians admitted to hospital have what’s called a high travel burden, meaning there’s no clinic, no hospital, often not even roads, to get them to the medical care they need, like Paula and her son Noah from Nunavut.

Paula Alorut

There’s not much equipment up north. The nurse in charge retired. We would have to fly down where there’s available doctor.

Avis Favaro

Her young son developed sleep problems, obesity, diabetes, and is partially blind now in one eye. But help was achingly far away from her family, over 2,000 kilometres from her community.

Paula Alorut

I had to leave my other kids and my family to go get my baby treatment. It was hard.

Avis Favaro

And there are doctors like Radha Jetty, trying to help families of these children who must travel from Canada’s north for care at the Children’s Hospital of Eastern Ontario, where there’s a specialized clinic.

Radha Jetty

It’s very difficult. Inuit children, their families, have to leave their home, their support systems, their land, their culture, their families. And so while they are far away from home, we need to ensure that we try to support these families to access the care that they need.

Avis Favaro

Welcome to the Canadian ºìÁì½í¹Ï±¨ Information Podcast. I’m Avis Favaro, the host of this conversation.

A note, the opinions expressed here don’t necessarily reflect those of CIHI, but it is an open discussion.

And this episode looks at how over a quarter of a million Canadians admitted to hospital travel hundreds, even thousands of miles, at large personal and systems cost. It’s just starting to be identified, all with an eye to making improvements for patients and the health system.

Thank you so much for talking to us on the podcast, Paula.

Paula Alorut

You’re welcome.

Avis Favaro

Our first guest is Paula Alorut, mother of five, but her particular concern is her youngest, Noah. He suffers from several serious medical problems, from sleep apnea that’s triggered problems breathing, and obesity that likely triggered type 2 diabetes. He’s just six years old and weighs over 160 pounds, but is now getting care at CHEO in Ottawa.

Okay. Paula, let’s start off with the story about your son, Noah. Can you tell me when you started to notice that he needed more intensive care?

Paula Alorut

By the time when he was a little three-year-old, me and my son, 20-year-old son, started to notice that he sleeping is off. He had to wake up Noah here and there because he had sleep apnea, obese, and airway was so small that they had to do urgent tonsils and androids (sic) [adenoids] out two years ago.

Avis Favaro

How did you feel when you heard that?

Paula Alorut

I didn’t know what to do because I was going through a breakup with my long-term relationship, which was abusive, and so I couldn’t know what to do.

Avis Favaro

Oh, Paula, I’m so sorry. And I understand that you lost another child 11 years ago. It was a boy whose name also was Noah.

Paula Alorut

He was born premature with very large heart murmur, and he survived four years and nine months, and then influenza, the flu had him. And he has health problems almost the same way as my first Noah. So it’s hard to see. If I lose another child, it’s just going to be more devastating because he resembles my first Noah so much.

Avis Favaro

I am so sorry you have been through all of this. I totally understand. You want to do anything you can to keep him healthy and let him live his full life.

So when you discovered that your new baby, Noah, was getting sicker, was gaining weight, and had symptoms of not being able to sleep, and he needed help, was there medical help available near where you live?

Paula Alorut

I was getting more concerned about Noah’s health. I didn’t know who to ask and where to go. And then my nurse friend on Facebook, Marilyn, she messaged me on Facebook asking to see if it’s okay for her to mention to the doctor on what’s going on with Noah’s condition. And I said, yes, please do, because I know for a fact that we have to see the nurse, local nurse practitioner first, and then nurse would be sending information to the doctor, and then it would be finally put in the list.

But this was urgent, and the doctor was leaving that same afternoon. So I managed to dress him up. I got a ride from family friend, got dropped off, and that’s when Dr. Sindu noticed that it’s urgent. We are going Ottawa soon. That was two years ago, March, that he was seen up north. And then by April, within a few weeks, we went down here April 17, 2023. And then they found out that he has sleep apnea and other illness.

Avis Favaro

Oh, that would have been scary.

Paula Alorut

Oh, it was really scary.

Avis Favaro

So how difficult was it for you to get to the health centre? Is it close to where you live?

Paula Alorut

No. We didn’t have no snowmobile or a four-wheeler to go to the health centre. For me to walk with Noah, it was like 20 minutes. For me to have him on that sled, I would have to dress him up. Even though he’s not feeling well, trying to dress him up, it was very hard because he was running out of breath constantly.

Avis Favaro

Mm-hmm. So it was physically difficult. So when you heard he needed urgent medical help, you realized he had to go far away.

Paula Alorut

Yes. Like Ottawa is like a second home for me. I delivered my first Noah here. And then, a year-and-a-half later, I delivered another baby that was premature, and then Noah. I have no family here. Just few, far distants that are not close to me. And if I try and get help through medical, wanting my spouse or relative to come in, it was hard.

Avis Favaro

I can tell by your voice. So what kind of medical treatments has he received?

Paula Alorut

He’s been taking metformin for the past year. And—

Avis Favaro

And that is for type 2 diabetes?

Paula Alorut

Yes. For him to try and lower his weight down. And for now, I’m getting—maybe in two, three days, I’ll be going for ENT appointment follow-up with him. So from that, I’ll find out currently what’s going on with his ears, nose, and throat after getting surgery two years ago.

Avis Favaro

And then the other problem you mentioned is that, probably linked to the diabetes, he’s having problems seeing with his eyes. What did they tell you is happening there?

Paula Alorut

His left eye is basically almost blind. And he was prescribed with glasses two years ago. And he is a big baby, like big kid. I myself is like 140 pounds, and he’s like 160 pounds, six years old.

Avis Favaro

This is a big, long journey for you.

Paula Alorut

Oh, yes.

Avis Favaro

Has the clinic there at CHEO, that is trying to facilitate the medical treatment and travel that’s involved, helped you at all?

Paula Alorut

Yes. They’ve helped me and my boys a lot. So my middle kid was left alone up north with my parents for almost two years when Noah was coming down here for medical on and off.

Avis Favaro

And so is he still there? Or is he with you—

Paula Alorut

No.

Avis Favaro

â€Â£´Ç·É?

Paula Alorut

They all came down in November. So everyone, all my three boys are here now with me.

Avis Favaro

Excellent. Do you want to go back home to Nunavut?

Paula Alorut

No. No. It’s too much. Why bother being up north when Noah has health issues, and I wouldn’t want to lose another kid? No. I have a job, full-time job here now, so—

Avis Favaro

Oh, you do? What—

Paula Alorut

Yeah.

Avis Favaro

—what are you—what are you doing for work?

Paula Alorut

I’m taking care of Nunavut clients that are coming here for medical.

Avis Favaro

Well, that is certainly appropriate. Right?

Paula Alorut

Yes.

Avis Favaro

So you know what they’re going through.

Paula Alorut

Yes, I do.

Avis Favaro

And one of the reasons we’re doing this podcast, Paula, is because we’re talking about the travel burden. What do you want people to know, I mean, about solutions?

Paula Alorut

To make sure, even though a small community, to have an available doctor most of the time, because what I can say is we have maybe 26 communities in Nunavut, and there’s only one city that we have to go fly down for medical.

Avis Favaro

So one of the solutions, you would say, is more health professionals, doctors, nurses, nurse practitioners in—

Paula Alorut

Yes.

Avis Favaro

—more communities.

Paula Alorut

Yes.

Avis Favaro

How urgent is it?

Paula Alorut

For my community, it’s been urgent for the past five years. After the nurse in charge who was working there for 20 years retired, they can’t find any nurse in charge because of the hours of availability and how far it is.

Avis Favaro

You’re dealing with people who come down from Nunavut for care. Are you seeing some very troubling stories about what the lack of care or the difficulty getting it is—

Paula Alorut

Oh, yeah.

Avis Favaro

—causing people? Yeah. Give me some examples.

Paula Alorut

Like most of our clients for the past two, three months is like from a town, Clyde River. So that community needs to be more improved, more taken care of, even though it’s a small community. And lately, more babies being brought down here during wintertime is what I noticed. And then—

Avis Favaro

With RSV? Or pneumonia?

Paula Alorut

RSV, pneumonia. Babies from newborn to two-year-old is what I’ve been noticing.

Avis Favaro

Got it. So it’s really primary care you’re talking about that they need—

Paula Alorut

Yeah.

Avis Favaro

—more of, so that they could prevent some of these things?

Paula Alorut

Yes.

Avis Favaro

Do you feel that the Ottawa—the hospital, the Children’s Hospital of Eastern Ontario, CHEO, has been more culturally sensitive to you and your family’s needs?

Paula Alorut

Yes.

Avis Favaro

And that helps?

Paula Alorut

It helps a lot.

Avis Favaro

Why?

Paula Alorut

More people like nurses and health professionals has more understanding of my family.

Avis Favaro

Do you feel hopeful?

Paula Alorut

Oh, yes, I do.

Avis Favaro

What’s your hope?

Paula Alorut

My hope is to get better health benefit to kids up north sooner than later and have a wonderful life. Just be grateful for how far you can go through, even though it gets really hard at times. I’ve gone through so much, but I’m still surviving. I’m still standing. Just keep having a good faith and hope. If you can’t do that, talk to someone, just let it out, don’t keep it inside, is all I can say.

Avis Favaro

Thank you so much, Paula.

Paula Alorut

You’re welcome

Avis Favaro

From the bottom of my heart, I really appreciate it.

Paula Alorut

You’re welcome.

Avis Favaro

CIHI’s data shows that some provinces, like Ontario and Quebec, have the lowest travel burden, while those in northern territories have rates up to 14 times higher. This data is important because it can help provinces and territories decide where services should be located and how to better serve patients.

Our next guest is Dr. Radha Jetty, a pediatrician who, for a time, worked in Nunavut. She now leads the Inuit Child ºìÁì½í¹Ï±¨ and Nunavut Program at CHEO. She’s also one of Noah’s physicians.

Thanks for coming on the podcast.

Radha Jetty

Thank you for having me, Avis.

Avis Favaro

What do you see in terms of the challenges and the difficulty of having to make this move and be somewhere else for a year or two?

Radha Jetty

It’s very difficult. Inuit children, their families have to leave their home, their support systems, their land, their culture, their families, and access care in an environment that is so far from home. You know, there may be other challenges in terms of cultural differences, language differences, and not just challenges in support. They’re also not able to always maintain employment. And so that means that, financially, they’re also very stretched.

Having a Nunavut health card and needing to live outside of Nunavut may also provide some barriers in terms of accessing certain services that may only be provided or easily accessible to Ontario residents. So we also need to understand the complexities of what it’s like to access care outside of your home territory.

Avis Favaro

Your own story started a few years ago, where I think you had this fork in the road where you could have gone and practised medicine as a pediatrician somewhere else. But you chose Canada’s North. Why did you make that choice?

Radha Jetty

Well, it was really interesting. I always had this desire to, you know, to try to provide care to those who need it most. And at the time, you know, I was very interested in travelling and working overseas and working with individuals, families who are very vulnerable or experiencing high vulnerability and high levels of health inequity.

However, during my training, I had the opportunity, both during medical school and residency, to go to Canada’s North.

Avis Favaro

To Nunavut.

Radha Jetty

To Nunavut. The first time was actually in northern Quebec, in Puvirnituq. And the second time, as a pediatric resident, I had travelled to Iqaluit and lived and worked there for one month during one of my rotations.

Avis Favaro

What did you see?

Radha Jetty

Well, it was during that time that I realized that I did not need to travel and cross an ocean to provide the care to individuals who need it most. We have individuals who are experiencing significant health inequity right here in Canada, right in our own backyard. Children and families who experience such significant poverty, food insecurity, children who live with high levels of medical complexity, with high levels of medical fragility, who do need to access care, you know, at pediatric centres like CHEO.

And so it was during that rotation that I realized that I wanted to stay here in Canada and do the work that I needed to do right here at home.

Avis Favaro

Fair to say it embedded itself in your heart?

Radha Jetty

Absolutely. And I think, when I finished my training and I had the opportunity to actually create a position for a pediatrician in Nunavut and make Iqaluit my home for a few years, it was a very special time in my life.

Avis Favaro

Wonderful. When you were there, you saw the burden of having to deliver healthcare up there, but also what it means for a patient.

And part of what ºìÁì½í¹Ï±¨has done in this report is looked at the burden that 1 in 11 people—this is all over Canada—have this burden of having to travel somewhere for care.

Radha Jetty

We definitely saw a lot of children who needed to leave Nunavut to access the care that they needed. I can remember a case where there was a child who was diagnosed with leukemia, and children who live in rural and remote areas often need to leave their homes, not only for weeks or months but sometimes years. Sometimes, they’re not able to return home altogether if they are—their medical situation’s very fragile.

And we worked very hard to try to be innovative and try to provide care closer to home. And I think that was the exciting part of living and working in Iqaluit at the time and trying to be creative and, you know, develop new models of care that could try—that could potentially keep kids and their families together close to home.

Avis Favaro

And that led to the clinic at the Children’s Hospital of Eastern Ontario. Pronounce it for me and what does the name mean?

Radha Jetty

So the clinic’s name is the Aakuluk Clinic. Aakuluk is a term of endearment that, you know, parents will often use with their children, with their family members. It’s a term of affection, a very warm term.

And we wanted to use this name for our clinic, you know, to highlight the level of care and concern that we have when we approach families who are far away from home, needing to access care here at CHEO and in Ottawa.

Avis Favaro

What do you do to help them ease this travel burden from Nunavut to Ontario?

Radha Jetty

You know, for over 25 years at CHEO here, we’ve been caring for some of the most medically and socially complex children from Nunavut. We also have been working with a number of partner organizations here in Ottawa, who are also—who also provide care and, you know, met the unique needs of Inuit children, their families from Nunavut.

Avis Favaro

How do you know that it’s easing the burden of this medical travel?

Radha Jetty

I don’t know, you know, if we can answer that particular question. Our clinic really is trying to support the children who have to be placed in medical foster care due to their fragility and are separated from their families. And so we are really trying to support both the families of origin and the foster children and the children who are in that care.

And we also provide care to families who are detained in Ottawa for long periods of time. And so one of our priorities is to try to help children and their families be repatriated back to Nunavut as soon as it is possible.

Avis Favaro

Mm-hmm. And you’ve helped bolster the clinic up there. At the time you were there, you were the only pediatrician.

Radha Jetty

Well, that’s right. Back in 2008, there was no full-time pediatrician position in Iqaluit, Nunavut. And it was important for me to try to explore, to advocate for the creation of a position for a full-time pediatrician and to develop a pediatric—a formal pediatric program.

And now, there isn’t just one position but multiple positions, multiple full-time pediatricians who call Iqaluit home, which I think is a great success.

Avis Favaro

Does that make you feel?

Radha Jetty

You know, I feel very happy. I feel … I guess the reason why I’m hesitating is that I think it was a long time coming. You know? I think that it takes a lot of work to ensure that we provide equitable care. And, you know, I think there’s a sense of satisfaction that we are moving forward. I still do feel very strongly that we still have a long way to go as well to really, truly provide equitable care.

Avis Favaro

You and your team conducted a study to see how this program and this transfer of patients between Nunavut and Ottawa is working. What did you find?

Radha Jetty

Yes. So we did this study to try to understand what were the strengths and the challenges of the Aakuluk Clinic. We were very happy to know that many families felt that—families and providers felt that the clinic was working towards trying to include Inuit culture and language into the care provision, that we really focused on trying to build trust, that we were trying to develop long-term relationships with patients as well as other providers.

Avis Favaro

Do you think this is a recipe for easing this travel burden?

Radha Jetty

You know, I think part of the burden of travel is the challenge that the families experience when they are so far from home. And they’re in an environment where there’s a different culture. They might be experiencing racism. There is a difference in language. And all of this creates a significant amount of stress for these families. They might be experiencing depression.

Avis Favaro

Must be hard. Right? They’re there not because they want to be.

Radha Jetty

Exactly. And, you know, we also hear from other institutions in the city, hospitals, the boarding home, the Ottawa Police Service. They’ve reported high levels of safety concerns as a result of this distress. And I personally have worked with families and, you know, seen families experience the consequences of not being supported during the distress.

There was an unfortunate suicide of a parent during this unfortunate time. There was a situation of child abduction. I worked with a family where, unfortunately, there was a situation of sexual maltreatment of a child while they were unsupervised. It’s a very stressful environment to be displaced when they have to access the care that they need. And the families don’t have a choice.

Avis Favaro

Like these events that you talk about happened before the clinic officially existed?

Radha Jetty

Well, you know what? They’re still ongoing. But we do find—and, you know, that’s what we see from the data of the study—is that, you know, the families and the providers are experiencing more support as a result of this clinic. So I think we’re doing something right with the clinic. And, you know, we would like to ensure that we have the resources that we need to continue moving in the right direction and, you know, providing the care that the families need. But we still have a lot of work to do.

Avis Favaro

It sounds like it’s been a win-win in the sense that the clinic—or Nunavut, has more pediatricians because of it but, also, you’re able to give people, when they come here, more support.

Radha Jetty

Yes. I feel that, you know, in the last—in the last few years, we’ve made amazing and impressive gains. And that’s why data is important. And when we develop innovative models of healthcare that are providing positive results, we need to be able to accurately study that, track that, report that, share that, disseminate those results.

And we hope that, you know, other centres will be inspired by, you know, the success that we’ve experienced. And I’m excited to potentially even have collaboration across the country to try to create more robust models of healthcare.

Avis Favaro

Thank you so much, Dr. Jetty. Appreciate it.

Radha Jetty

Thank you, Avis.

Avis Favaro

Dr. Jetty will be presenting data on the successes of the clinic in the coming months, trying to show the value of a service to help bridge the distance gap and help Indigenous and remote patients get proper and equitable care.

And there’s much more on the travel burden report on the website at cihi.ca. That’s C-I-H-I-dot-C-A. And please subscribe to our podcast on your favorite player.

I’m Avis Favaro. Talk to you next time.

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