by Jaymee Maaghop, CCSN Public Policy Assistant
The Canadian Cancer Survivor Network hosted its second All-party Cancer Caucus meeting with members of the Ontario legislature at Queen’s Park, Toronto on March 21, 2018, with participants continuing discussions on the topic of rehabilitative services for the side effects of cancer and its treatments. There were many new faces at the table, and participants engaged in a robust exchange on strategizing how to address the lack of cancer rehabilitation services and trained experts who could provide it in the Ontario healthcare system.
Studies show that there is a serious need for cancer rehabilitation services and programs. In particular, a survey conducted across Canada found that there are only twenty formal cancer rehabilitation programs that exist, as Jaymee Maaghop, CCSN’s Pubic Policy Assistant, explained.” Yet in Ontario alone, there are about 500,000 cancer survivors, and approximately one million in the whole of Canada. Researchers have also found that there is no database available on these services, which makes it even more difficult to gain access to much needed rehabilitation and care for the side effects of cancer and its treatments.
There is clearly a need to address this shortage of cancer rehab programs in order to provide appropriate care to patients, survivors and caregivers,” Maaghop added.
Prior to the second All-party caucus meeting, CCSN met with representatives from Cancer Care Ontario (CCO) to learn about how CCO is implementing rehabilitation, which is part of the Ontario Cancer Plan for 2015-2019. Jackie Manthorne, CCSN President & CEO, reported at the Caucus meeting that “CCO’s role is to set guidelines and best practices. They cannot mandate or control cancer rehab services across the province. Therefore, access is still not available to most patients and survivors.”
CCO has been conducting research on the quality of rehabilitation services and programs and using this information to make recommendations for improvement. Ontario’s Auditor General’s 2017 Annual Report highlighted that “as many as 40% of cancer patients require help from specialized professionals in addition to their medical treatment… [However] more than half of the 14 regional cancer centres did not have a dedicated psychiatrist, occupational therapist, psychologist, or physiotherapist on site.”
Dr. Jennifer Jones, Director of the Cancer Rehabilitation and Survivorship Program at the Princess Margaret Cancer Centre in Toronto, pointed out that “the focus has been to cure the disease and our funding envelope has been to diagnose and treat the disease. But it has not been at all to deal with any of the issues post treatment. Unlike other chronic diseases where it’s the disease process itself that causes disability, with cancer it is actually the treatments that we give to people that cause disability. People often will come into our cancer system quite healthy, doing well, working, and being able to do whatever it is with their grandchildren and their families. They go through our cancer system and we spit them out at the end, disabled, impaired, unable to work, and unable to do those things, and we don’t have anything to deal with that or help them to get back to the way they were. As a result, cancer survivors have higher rates of unemployment, long term disability, healthcare utilization, and social
“Many cancer patients will develop a disabling fatigue from treatment. For a good majority of these people, once treatment ends and over the first couple months post treatment, that will go away and slowly get better. But there is a substantial minority – about a third of patients – that have persistent fatigue that doesn’t go away for some reason, and we don’t know why. And it’s not like a fatigue like you and I might feel when we had a bad sleep, or overdo it at the gym, or just had a really busy day. Even with rest, it doesn’t go away. It’s sort of like an in-your- bones type of fatigue. And it impairs people’s lives very significantly so they are unable to work or do the things they want to do.
“I think our cancer system does a good job in terms of surveillance for cancer spread. We may actually overdo it. What we don’t do a great job of is intervening for the consequences of cancer treatments and persistent and late effects and managing those. We also don’t do a great job of coordinating care between the community and other specialists in our cancer system,” Dr. Jones added.
MPPs and patients concurred with Dr. Jones that because our cancer system is heavily focused on illness and treatment, there has been no attention given to recovery. An additional major problem identified was capacity building, as there is a lack of expertise and consistency because of how healthcare professionals are trained.
Colleen Dunphy, Interim Manager for Collaborative Practice and Education at St. Michael’s Hospital in Toronto, added, “One of the things that we’ve never defined is the basic competencies to prepare someone to provide physiotherapy in a cancer rehabilitation setting. What training enables you to say that yes, I am competent to see patients and survivors with cancer? No one has ever looked at that.
“There are general competencies to say whether you’re qualified to work in oncology or not, but it’s up to each healthcare professional to self-declare whether they feel competent. And we’re talking about oncology as this one homogenous group of patients, but we know that prostate versus breast versus head and neck cancer is totally different diseases with totally different symptoms,” Dunphy added. MPPs were stunned to learn about this gap in education and expertise. Scientists in the roundtable discussion stated that fortunately, the expertise is already there. The challenge is developing a consistent learning program, distributing it and training more people about cancer rehabilitation.
The Cancer Rehabilitation and Survivorship Program at Princess Margaret Hospital
The Princess Margaret Hospital (PMH) Cancer Rehabilitation and Survivorship (CRS) Program in Toronto helps survivors at all stages of their cancer journey. The goal is to screen and treat cancer-related impairments to improve survivors’ physical and psychological outcomes.
Each survivor referred to this program receives a comprehensive cancer rehabilitation assessment. A personalized care plan is then developed based on their identified impairment and level of disability. For patients with moderate to high disability, care may include one on one group interventions with the CRS team and collaboration with the Toronto Rehabilitation Institute Musculoskeletal Rehabilitation and Multi-System Program (MSK) services when required.
Patients with lower levels of disability are referred to community services. In March 2016, the CRS program launched an in-person group based 8-week multidimensional Cancer and Rehabilitation and
Exercise program (CaRE@ELLICSR) with the aim of restoring and optimizing function, well-being, and quality of life to those with cancer-related impairments.
Patients enrolled in CaRE receive an individualized exercise program designed to match their abilities with their goals. The 8-week program consists of weekly one hour group exercise classes followed by a one hour education session. The educational sessions provide information designed to teach survivors how to self-manage the most common persisting issues, including fatigue, cancer-related cognitive impairment, healthy eating, managing emotions, and setting goals. These sessions are delivered by specialists in each area.
Each participant graduates by completing a final fitness test to assess their progress and discuss goals and strategies for continued exercise and self-management. Patients are then booked for follow-up appointments three and six months after graduation to monitor progress, reassess goals, and make exercise program adaptations as needed.
It is important to note that the Survivorship Program at PMH has the only cancer rehabilitation specialist in Canada. His name is Dr. Eugene Chang.
Presentations were followed by a congenial but spirited discussion among MPPs, patients, caregivers and scientists about the ways and means of ensuring that more survivors have access to cancer rehabilitation and how this could be funded and implemented.
Manthorne informed the Caucus that CCSN will be asking a question about cancer rehabilitation as part of its pre-election questions to MPPs from political parties before the June 7, 2018 provincial election, and asked MPPs to share information provided at Caucus meetings to their colleagues.
The third meeting of CCSN’s All-party Cancer Caucus will be held in fall 2018.
MPP members of the All-party Cancer Caucus:
- Liberals: John Fraser, Ann Hoggarth, Ted McMeekin, Soo Wong
- Conservatives: Jeff Yurek, Michael Harris, Lisa Thompson, Bill Walker
- NDP: France Gélinas, Percy Hatfield, Monique Taylor
CCSN and cancer community representatives:
- Jackie Manthorne, President & CEO, CCSN
- Mona Forrest, Secretary, CCSN Board of Directors
- Jaymee Maaghop, CCSN Public Policy Assistant
- Dr. Jennifer M. Jones, Director, Cancer Rehabilitation and Survivorship Program, Butterfield Drew Chair in Cancer Survivorship Research and Senior Scientist, Princess Margaret Cancer Centre, UHN, and Associate Professor, Dept. of Psychiatry, Faculty of Medicine, Dalla Lana School of Public Health (Cross Appointment), University of Toronto
- Colleen Dunphy, Interim Manager, Collaborative Practice and Education – Phys Med, Health Disciplines Practice and Education, St. Michael’s Hospital
- Eileen Dahl, breast cancer patient and caregiver
- Doug Nugent, prostate cancer survivor
- Kathy Nugent, caregiver