CCSN’s first Alberta All-party Cancer Caucus:
Searching for rehab as a cancer survivor
Studies on gaps in cancer rehabilitation services for survivors show that it is a nationwide problem, which is why Jackie Manthorne, CCSN‘s President & CEO and Jaymee Maaghop, CCSN’s Public Policy Assistant, travelled across the country to Alberta to host its first All-party Cancer Caucus meeting with MLAs in Edmonton on May 8. Five MLAs representing four parties attended the Caucus meeting, along with two cancer patients, a caregiver and CCSN reps. Alberta is the second province in which CCSN has established an All-party Cancer Caucus, with two successful Caucus meetings of MPPs already held at Queen’s Park in Toronto.
Participants in the Alberta Caucus meeting identified the lack of rehabilitation services for cancer survivors and the importance of psychosocial support throughout the cancer care continuum for patients, survivors, their families and caregivers.
CancerControl Alberta (CCA) is a division within Alberta Health Services, established to operate provincial cancer facilities, outpatient clinics, and programs. Jaymee Maaghop, CCSN’s Public Policy Assistant, interviewed CCA and found that CCA’s primary role is during cancer patients’ treatment. After treatment, CCA collaborates and consults with primary care and community-based teams to facilitate supportive care, including rehabilitation, psychosocial support and social work services for survivors. “But CCA does not have the mandate to directly supervise the provision of services for survivors, and because of that, they do not take full responsibility for primary care and community care partners for post-treatment,” reported Maaghop.
A common issue in both Ontario and Alberta is the absence of formally defined credentials for specialists in cancer rehabilitation. But Dr. Margaret L. McNeely, a physiotherapist and Associate Professor in the Department of Physical Therapy at the University of Alberta, states that while this may be the case, physiotherapists and speech language pathologists receive more training in oncology rehabilitation in Alberta than in any other province. “Fortunately, in terms of cancer rehab and exercise, Alberta is actually the province that generates the most research evidence,” said Dr. McNeely.
Research generated from studies on cancer rehab in Alberta has shown that cardiovascular disease is one of the side effects that cancer survivors may experience after treatments. Dr. McNeely argued that, “cardiovascular disease now occurs as a focus in some of our cancer treatments. Some breast cancer survivors are more likely to die of heart disease than of breast cancer.”
“Side effects like lymphedema are called late-appearing and often don’t appear until months or years after cancer treatments end. But once patients finish treatment and are discharged to their community, there is little or no awareness about the treatment for that condition. How then do survivors access those services? Or in the case of patients who live in rural or remote communities, there may not be anybody there who actually knows how to treat it.”
However, all hope is not lost. Dr. McNeely is leading the Alberta Exercise Program (ACE), an exercise rehab project for cancer survivors. Dr. McNeely and her team at the Cross Cancer Institute have discovered that patients and instructors in the community can be taught rehab for chronic conditions using a self-management approach. The ACE will be implemented across the province, but at this point, it is not a permanent program. For more information, please click here.
Sharon Dixon (pictured left with Jackie Manthorne), an Edmonton-based head and neck cancer survivor, a strong, vocal candidate for those affected with the disease and its long term effects and a member of CCSN’s Head and Neck Cancer Advisory Council, wants to see more provincial support for the ongoing healthcare needs of head and neck cancer survivors. She was working for the provincial government when diagnosed, and has never been able to return to her job. Sharon detailed her eight years of hardship with recovery, including going through bankruptcy, the loss of her home and her struggle to pay off her debts and to heal physically and mentally.
“My cancer has not come back after 12 years, but that doesn’t mean I’m not sick,” she told MLAs. “I suffer with post-traumatic stress syndrome (PTSD). I suffer with anxiety and depression. I have been suicidal. I’m on medication. I’ve tried to get help from psychologists and psychiatrists but they just brush me off. They don’t take my condition and my concerns seriously. It’s been very difficult.”
Sharon pointed out that one issue is the lack of specialized counsellors to deal with anxiety, depression and PTSD that cancer patients and survivors face. “These issues are not only my issues. They are the issues faced by other Albertans diagnosed with head and neck and other cancers.”
Cheryl Petruk (pictured right), caregiver for her husband, who has a non-curable blood cancer, highlighted the necessity of psychosocial care for patients, their families and caregivers. “Cancer patients in Alberta receive excellent care and we have a phenomenal set of cancer centres. And the physicians are world class. But we are lacking in one area: the psychosocial treatment, which should be included not only for the patient, but also for their spouse and children. As a care partner, I have struggled with guilt. Why him and not me? There have been times during my husband’s journey when my emotional state has not been good, and our adult sons struggle with guilt and they are not sure how to help their dad.”
Dr. McNeely then added that, “We do have specialized services but there are certainly issues in terms of access. We have wait lists and services are not necessarily provided in all communities.”
This echoed concerns raised by Stewart Campbell, a prostate cancer patient who is the treasurer of PROSTAID Calgary/Prostate Cancer Canada Network Calgary Society. He argued that while rehabilitation services are readily available in Calgary through Alberta Health Services, the Prostate Cancer Centre and private specialists, this is not the case in rural communities.
MLAs were very supportive and appreciative of the information that was delivered to them in the meeting. They look forward to having more discussions on the issue of rehabilitation for cancer survivors post-treatment.
CancerControl Alberta also sees CCSN’s All-party Cancer Caucus as complementary to their efforts in remodelling the framework of supportive care and rehab medicine for patients and survivors in the province of Alberta.
The Canadian Cancer Survivor Network welcomes opportunities to work together with patients, caregivers, survivors, MLAs and CancerControl Alberta to improve access to cancer rehabilitation in Alberta.
MLA members of the All-party Cancer Caucus
- NDP: Dr. Bob Turner, Jon Carson, Deborah Drever
- UCP: Leela Aheer, Rick McIver, Tany Yao, Nathan Cooper
- Alberta Party: Greg Clark
- Liberals: Dr. David Swann
CCSN and cancer community representatives
- Jackie Manthorne, President & CEO, Canadian Cancer Survivor Network
- Jaymee Maaghop, Public Policy Assistant, Canadian Cancer Survivor Network
- Margaret L. McNeely, Physiotherapist, Associate Professor in the Department of Physical Therapy, Department of Oncology, University of Alberta and Alberta Health Services Cross Cancer Institute
- Cheryl Petruk, Caregiver and Chairperson, Canadian Myeloproliferative Neoplasms (MPNs) Patient Advocacy Group
- Sharon Dixon, Head and Neck Cancer survivor
- Stewart Campbell, Prostate Cancer patient, Treasurer of PROSTAID Calgary/Prostate Cancer Canada Network Calgary Society, Former Executive Director of PROSTAID Calgary/Prostate Cancer Canada Network Calgary Society
The next All-party Cancer Caucus meeting with members of the Alberta legislature will be held in fall 2018.