SARAH CLEARS A PATH
Sarah Telford, 19, of Merrickville is receiving palliative care for leukemia, but her tireless efforts are resulting in changes at CHEO that will make the hospital more accessible for future patients. ‘I can change things for the next kid,’ she says.
Just before the elevator doors opened at Children’s Hospital of Eastern Ontario, Sarah Telford playfully, but pointedly, picked up a nearby yellow caution cone — the kind that warn of wet floors, spills and whatnot — and placed it in front of the elevator. When the doors opened, the elevator’s lone occupant, hospital CEO Alex Munter, was compelled to negotiate his way around the obstacle as he exited, no small feat considering that he was in a wheelchair.
For Telford, a 19-year-old Merrickville resident whose leukemia has forced her to spend vast swaths of her youth at CHEO and who now must use a wheelchair as well as the oxygen and intravenous tubes as she receives palliative care, such hurdles are all too common.
Determined to address many of the accessibility issues she’s faced at CHEO, she invited Munter recently on a wheelchair tour of his own facility.
That the chief administrator agreed to participate was significant to Telford. “It means that the hospital does care,” she said. “And they do. They do their best. They just need people to point out things.”
Telford has already had some success in retrofitting the hospital. Following her observation that the Medical Day Unit lacked an automatic door opener, one was installed last year, among the nearly 1,800 improvements the hospital made during the year. On Wednesday, she urged Munter to open that same door on his own, as she had to do on numerous occasions before the wheelchair-accessible opener was put in place.
“I’m proud of getting that done,” she beamed as he struggled with the door.
Effecting change was initially a slow process, she recalls, as her ideas took time to climb the hospital’s organizational chart. “I don’t think my early emails got to (Munter), but slowly my Interlink nurse, Marilyn, and my oncologist, Dr. Johnson, and my caseworker, Kay, everyone sort of pushed it a little more up the chain. And once we got it to Alex, it was like ‘No problem. Let’s do it.’”
Telford pointed out other deficiencies to Munter, including tables that are too high; patient washrooms that can’t easily accommodate wheelchairs; terrible customer flow in the hospital’s Oasis coffee shop; and waiting areas where her parents, Don and Lynn, have had to rearrange furniture to make room for their daughter. On the 4 North ward, where oncology in-patients are treated, she pointed out the Tub Room, sometimes the only place where she can wash. Its door doesn’t lock and the room itself is no longer actually part of the wing, situated on the wrong side of the security doors.
Along the way, she also pointed out areas where welcome improvements have been made, such as the installation of electrical outlets at a more convenient height.
And while a hospital official took notes, Telford suggested some solutions that could be easily and inexpensively implemented. Families, for example, are currently given a single access card to the ward, but what if Dad goes out to run an errand and Mom subsequently wants to go to the cafeteria to grab a coffee, or take Sarah to the Tub Room, beyond the security doors, for a shower? Why not simply issue families a second pass? Telford asked.
“That’s a really good idea,” replied Munter.
Telford also sits on the hospital’s accessibility committee and its youth forum, advising officials on how patients’ and families’ experiences can be improved.
Among the larger projects she’d like to see is the construction of a 4 North rooftop patio. Cancer patients undergoing chemotherapy, she notes, aren’t permitted out of the ward to walk through the hospital to get some fresh air outside. “We can’t go outside unless we jump off the roof. That outdoor space is something that 4 North really needs, and I want to make sure that every kid on 4 North can use it.”
Her father, Don, agrees, saying that an outdoor area would greatly benefit patients such as Sarah who, after living on the ward for months on end, eventually tire of reading and watching reruns of M*A*S*H. Many patients, he says, have already indicated interest in seeing a patio built. “But none has pushed as hard for it as Sarah.”
According to Munter, it’s because of Telford’s lobbying that the hospital is now looking into how much a patio would cost to build and operate.
Most of the hospital, he adds, was built in 1974, and so there are numerous issues to address, and he’s glad for Telford’s vigilance.
“Sarah has really touched people’s hearts, and she’s very clearheaded about what she wants to accomplish, and I think there’s a lot of respect for that throughout the organization.
“We’re trying to empower every single person in the organization — staff member, physician, patient and family — to come up with ideas on how to make the place better,” he adds. “But another part of that is honouring the voices of patients and families and respecting their experience. Sarah is telling us we need to do better, and we need to listen to that.
“I spent 45 minutes in a wheelchair, and that’s not a lived experience. That’s a fleeting glimpse into other people’s lived experience. But it certainly gave me a very tactile impression of this issue.”
Sarah hopes that continues. “I’ve been here in and off for seven years,” she says. “There are a lot of nurses and other people here that I’d call family, and this is just about getting around and some things that are really annoying.
“Once I got old enough, I wanted to be able to use my voice to change some of those things. I can’t change that I’ve got cancer. I can’t change that I’m in a wheelchair. But I can change things for the next kid, so that they have an easier time.”
I can’t change that I’ve got cancer. I can’t change that I’m in a wheelchair. But I can change things for the next kid, so that they have an easier time.