As the province opens back up and things slowly return to normal, it is important for us to advocate for the continued use of tele-health. Patients and clinicians alike have experienced the benefits of tele-health, and through this blog I want to share those experiences with you so you understand why, once the pandemic ends, tele-health should remain intact. We are working to show people that tele-health is not a last resort or something that we used in the pandemic just to get by, but is a way to offer care which supports both patients and clinicians. If you have been following my blogs or tuned into our webinar last month you may be familiar with some of the benefits of tele-health I have previously discussed, but I also want to share the patient perspective. From now until the end of the summer, a portion of my blogs will be dedicated to a Patient Perspectives series in which I tell the stories of how tele-health has impacted real families and real patients from various backgrounds.
Today I am kicking off our series with the Nagel family. You may remember Dana from our webinar last month! This past week I sat down to chat with Dana and her oldest child, Emma, about the ways tele-health has made a difference for their family. The Nagels reside in Leduc, travelling around 45 minutes to a little over an hour for appointments in Edmonton, which are a frequent occurrence for their family. Emma, who is nearly 18, has two rare diseases, MCADD (a genetic, life-threatening metabolic disorder) and Complex 1 Mitochondrial (a genetic disorder which can impact the nervous system, heart, and skeletal muscles), a combination which has never been seen before. The Nagel’s second daughter, Sophia, passed away due to MCADD when she was very young. Their son Cameron is 10 and was born prematurely. He suffers from many complex medical conditions including spina bifida, muscular dystrophy, and aspiration issues. The complex medical needs that Emma and Cameron have mean that a large portion of the family’s life revolves around appointments, surgeries, medications, and other medical procedures.
Tele-health has enabled the Nagels to save time and money, given them more family time, and helped them manage the medical needs of their children more flexibly.
Before the pandemic, the Nagels hadn’t ever used tele-health for an appointment. Instead, to get ready for their in-person appointments at the Stollery or Glenrose (which often occur multiple times a week), the family would rearrange their day-to-day activities to make the appointment work. This meant Dana and her husband Richard, who both work full time, would have to make up work outside of normal hours and the children would have to catch up on missed school work, leaving little room for family time. Dana gave a glimpse into what her day is like when there is an appointment:
"For an appointment at 11:00 in the morning, when my parents can help, I will go to work very early in the morning. I usually leave around 3:15am to start at 4:00am. My husband would do all the medical care in the morning for the kids and get them off to school and go into work late, which would mean he would have to work late to make up the hours. My parents would pick whichever child had an appointment up at school and drive them to the appointment. I would leave work about 10:00am to drive to the appointment to meet them and find parking. We would go to said appointment and always have a long wait for the doctor or clinic appointment. Some clinic appointments you see many doctors, nurses, and specialists. The appointments can last 4-5 hours. By the time we would get home, it would be late. We would eat a quick supper and I will have to login to work to make up the time I’ve missed, while my husband deals with meds, medical procedures, and bedtime. I work until 11:00pm-12:00am, fall into bed and get up the next morning to do it all again."
The amount of preparation that goes into each appointment is almost unimaginable. It takes hours to arrange and coordinate work, school, and the help of Dana’s parents, along with the travel time to the appointment, traffic, finding and paying for parking, ensuring all the necessary foods and medications are packed, getting the children situated in their wheelchairs or walkers, and finally making it to the waiting room. Dana estimates that for each appointment, before a doctor even sees her children, there are about 3 hours of time spent getting ready, sometimes all for just a quick 5 minute follow-up appointment.
Not only do the Nagels need to spend an enormous amount of time on appointments and related activities, but they also have to spend a lot of money. In the past 13 years the Nagels have gone through four vehicles and spent tens of thousands of dollars in gas, parking, and vehicle maintenance. Last year they spent over $6000 on parking alone, and these are just the travel costs.
Another big expense has been tutoring for Emma to keep her caught up on school work. In the last 7 years the family has spent thousands of dollars on tutors because of the amount of school missed due to appointments. Emma has just recently graduated, which is a huge accomplishment for any child, but especially for a student who one year missed over half of her math classes due to her medical appointments. Right now, Cameron finds it easier to catch up because of his age, but he has missed out on many recesses, gym classes, and field trips to attend important appointments.
Now that you have heard a little of what everyday life is like for the Nagels outside of the pandemic, let me tell you how tele-health has impacted them and benefited their family.
Emma told me that, initially, she was anxious for her first tele-health appointment because she was used to seeing her clinicians in-person, in the clinic, and didn’t know how it would work through the screen. After the appointment though, she was confident in the process and thought it was actually a better option for her follow-up appointments, where the clinician just has to talk with her and does not need to do a physical examination. Since this initial realization the family has found many benefits to tele-health appointments.
Since the onset of the pandemic, Dana estimates between Emma and Cameron they have had around 20 appointments, but have only needed to go to the clinic for 3 of them. This is a huge difference. If we use the estimate that each appointment requires 3 hours of preparation time, that means the family has saved 51 hours of packing, organizing, travelling, parking, and waiting for appointments. That is 51 more hours for the family to enjoy some quality time together, instead of catching up on work or school assignments.
The family has also found that tele-health allows them to manage the kids’ appointments more flexibly, and to book them so that it works best for them to minimize the time missed from school, work, or other activities. For the children, an appointment has gone from taking them out of school for a whole day to making them miss only one period, if that. For Dana, it means she and Richard do not have to rearrange their work schedules to get the children to their appointments and make up for the missed work in the evenings. This flexibility has also helped with clinician communication.
Dana says that communication between doctors is one of the biggest hurdles when you have children with multiple diagnoses. Cameron has been waiting for a multidisciplinary meeting with all of his clinicians from various clinics for close to two years. A few years back, for a multidisciplinary meeting of Emma’s, one of her main clinicians actually returned home early from her honeymoon in order to make the meeting work! The shift to tele-health enables these meetings to happen more easily as the clinicians do not all have to gather in one place.
Dana also spoke about how tele-health is allowing her to be a mom again, not just a nurse. Tele-health is giving the Nagels back their family time and allowing Dana to make memories for her children they can look back on and remember “more than just the medical stuff” their parents did with them. Dana described that it is a hard balance between getting to be the mom who can bake cookies and play Legos and read before bedtime, while also doing wound care and slowly putting medications down the children’s G-tubes so it doesn’t hurt. When this balance is disrupted by something like an appointment, it makes Dana feel like she can’t be a mom because she needs to be the nurse, and there isn’t any time left for the fun things.
For the Nagels, tele-health appointments are a small thing that makes a huge difference. Dana remarked that having as little as 3 of their normal 10-12 appointments a month moved online would change things for them. It would mean 3 more days that Dana can be a mom and create memories with her children.
There is no question that tele-health has been time saving for the Nagels. They save that 3 hours of prep and travel time for each appointment. Virtual appointments save Dana the stress of worrying about the countless “what-ifs” of traffic, poor road conditions, if she allowed herself enough time, if she’ll be able to find parking, or if she packed enough food. It also means that the family does not need extra help from Dana’s parents to coordinate things. With tele-health, an appointment is almost negligible for Dana in terms of the time it takes out of her day - it is like a coffee break or going for a walk during her lunch hour, taking very little time to get back into what she was working on beforehand.
It also saves the Nagels money. There is no cost to the family associated with a virtual appointment, aside from having an internet connection available. This leaves the money normally spent on vehicle maintenance, gas, parking, and tutoring to be saved, spent elsewhere, or to offset medical expenses.
I think Dana said it best when she ended her presentation during our webinar by saying “tele-health and tele-medicine could be life changing and life saving.” The Nagels are just one example of how virtual health is making a real difference for patients and families. While Dana admits that tele-health may not be appropriate for every type of appointment, there are plenty of cases where it is a good or even preferable alternative to an in-person appointment, especially for families who need to travel for their appointments.
Tele-Rehab 2.0 aims to help families like the Nagels in rural communities and long term care facilities so that they can receive care safely during the pandemic, and beyond. We hope that our project can allow patients to save the time, money, and stress that often comes with an appointment in the city, and give them access to specialist care in a safe and sustainable way. We know that virtual care is here to stay - and if we work together, we can make sure it is the best care possible.
Special thanks to Dana and Emma Nagel for speaking with me and sharing your experiences so freely. Your story is so valuable to our work and to the future of healthcare.