After mapping out the typical breast cancer journey in the Northwest Territories, one group is using its research to chart a path to holistic care.
The NWT Breast Health/Breast Cancer Action Group is initiating a two-year demonstration project, testing out newly developed cancer survivor care plans and peer support groups for patients in Fort Smith and Fort Good Hope.
“What we’ve found was that it was very interesting, nobody’s ever documented what the experience is (from) diagnosis through to treatment, to survivorship,” said Rosanna Strong, a spokesperson for the Action Group. “From that information we came up with 18 recommendations on how to improve, making that journey a little bit easier and a little bit more attainable for people here.”
Those recommendations consider every step of the journey, from diagnosis to treatment, after-care to palliative care. They have now been included in the GNWT’s new Cancer Strategy, tabled during the final sitting of the 17th Legislative Assembly.
“We came up with three recommendations that we would be pursuing,” she said. “One of them was survivor care plans for the North; another one was peer support programming throughout the North; and the other one was coming up with a document about the rights and responsibilities of being a cancer patient,” Strong said.
A survivor of breast cancer herself, Strong said the project is “close to her heart.”
“You’re basically in survivor mode and you just do anything you have to do to take care of the physicality (of it),” she said. “A lot of times, the emotional side just gets put in the background and the research is saying that people that go through cancer suffer a little bit from PTSD so it’s a huge shock to your body and it’s a huge shock to your mind as well.”
Consistency is key
The new cancer survivor care templates, modeled after others from Alberta and Manitoba, aim to make the healing process more straightforward by involving the patient in their care and making information more accessible.
The group is also working with the Department of Health and Social Services to integrate the program into its new electronic medical record system, so care remains consistent whether the patient is working with a nurse practitioner in their home or a doctor in Yellowknife.
“You can work together on your goal-setting, you can work together on talking with some of the side effects and who is going to do what for the next little while,” Strong said.
According to the Action Group’s report, between nurses, oncologists, family doctors and so on, there are often more than 20 healthcare professionals involved in one person’s treatment. However, no one position is responsible for navigating the system and coordinating care, especially once treatment is complete.
“Once we have gone through the treatment and everything, we’re sort of left adrift. Every six months we do go and see our oncologist or whatever, but other than that, we have no support group that we can go to,” said Louise Fraser, one of the Fort Smith-based program coordinators, also a breast cancer survivor.
This is why we wanted to start a group here.”
Once it starts – maybe in December – the group will be open to patients and their families.
“Then you get the two sides of the story,” Fraser said. “These men are affected through their mothers, their wives or whatever, their family. They want to know how they can be supportive and they want to know more about what is out there for people who do have cancer so they can understand and be more compassionate.”
The Action Group is coordinating the demonstration in partnership with HSS, Lutra Associates Ltd., individuals in the community, healthcare providers, local government, survivors and regional health authorities.
So far, the project has secured funding until January 2016 and fundraising efforts are underway to find support to finish the project in 2017.
“HSS has been very generous and gave us $70,000 to operate for this year,” Strong said, “but we need $72,000 (more) to complete the first part of our demonstration project.”