LYMPHEDEMA CARE IN ONTARIO: A lymphedema therapist's perspective
This is the first blog I have written in the advocacy section of my website. I have been treating people with lymphedema for seventeen years at the time of writing this piece and have, over the years, provided awareness and education for people at risk for and who have lymphedema through support groups, workshops at local libraries and cancer support centers. I have helped other professionals gain some knowledge about lymphedema by guest speaking at a few conferences, speaking to upcoming registered massage therapists and informally through phone conversations with health professionals who call my office for information. During the Covid-19 shutdown I had a few months to gain perspective on where the state of lymphedema treatment and knowledge in Ontario existed and the following reflects my evaluation in the form of a SWOT (strengths, weaknesses, opportunities, and threats) analysis. This blog is, of course, only my opinion.
Introduction
Early research articles since the late 1990s have talked about lymphedema, its underrecognition and the importance of its treatment for the physical, psychological, economic and social health of the individual who had this condition. In the early 2000s research focused on breast cancer related lymphedema, its risk factors and various elements of conservative treatment such as exercise and manual lymphatic drainage massage. In 2009, Canada began its journey of discovery and advocacy with the establishment of the Canadian Lymphedema Framework. Following the UK and the US in their endeavors to bring light to this chronic condition of swelling, they have continued to raise awareness to Canadians, both lay persons and professionals through annual conferences, performing and presenting research and providing education through their Pathways magazine geared for both healthcare professionals and people with lymphedema.
Ontario used to be the leader in this progressive movement of education and awareness about lymphedema thanks to the work of the head of the Ontario Lymphedema Association at the time who initiated the annual conferences in Toronto, Ontario. Awareness campaigns brought about new lymphedema therapists being trained and the creation of lymphedema programs in a select few hospitals for the treatment of breast cancer related lymphedema and primary lymphedema. However, in the last ten years some programs for lymphedema have been lost by either attrition or cutbacks leading to a lack of funded lymphedema care.
Since 2010 more researchers are involved in finding out how the lymphatic system works as well as how the lymphatic vessels and surrounding tissues are affected by a constant state of edema. Surgeons have explored new ways to help the lymphatic system function through lymph node transfer and lymphovenous anastomosis (LVA) procedures. Presently, Ontario has a few surgeons that are performing the LVA procedure. Internationally, researchers are shedding light on how the lymphatic system heals after surgery for breast cancer and some are trialing medication to help those with later stages of lymphedema. A major problem within the lymphedema treatment realm is that the assessment and diagnosis of lymphedema is based on subjective (the symptoms that the patient tells the healthcare professional they are experiencing) information and the history of events leading up to the swelling occurrence. The lymphoscintigraphy or lymphangiogram is supposed to be the gold standard test for diagnosing lymphedema, yet the test is not widely available in Ontario. Another issue within the lymphedema treatment realm is that while the International Lymphedema Society (ILS), the United Kingdom, American and Canadian Lymphedema Frameworks purports that the treatment of lymphedema should include skin care, exercise, manual lymphatic drainage and compression therapy, medical professionals have not adopted this paradigm of treatment due to lack of supporting evidence. There is more research done on exercise (predominantly related to breast cancer treatment) and compression therapy. Therefore, the full realm of treatment is not being recommended for patients. Further to this, most research surrounds cancer related lymphedema and does not include those who develop this condition for other reasons, creating a disparity in care for people with non-cancer related lymphedema. Other than private clinics, there are no funded lymphedema clinics in Ontario for these people.
The Purpose of a SWOT Analysis
Healthcare systems evaluate programs for effectiveness, efficiency, acceptability and equity. These are run in-house and not usually shared with the general public. Hence the lack of information provided by my internet searches for evaluating a lymphedema care program. Healthcare does not typically use the SWOT analysis as data used is quantitative (outcome measurement) and qualitative (patient surveys) to see if their program is useful. A SWOT analysis is typically performed by businesses that wish to identify strengths and weaknesses, threats and opportunities specific to their current business practices for improvement purposes. As I was performing this task for my business during the Covid-19 shutdown of 2020, I expanded it to look at the current situation in Ontario for the provision of lymphedema care. The outcome of which left me both defeated and excited for the possibilities of the future.
S Here are the bulleted points to my SWOT analysis of lymphedema care in Ontario.
STRENGTHS
Research is evolving to inform practice.
Recognition of breast cancer-related lymphedema has taken a foot hold as is the recognition of the inter-play of varying causative factors (scar tissue, radiation, lymph node removal, obesity and individual patient factors such as genetics and prior lymphatic vessels status).
There are a few education-based hospital programs for cancer related lymphedema and the beginning of surveillance for lymphedema as a proactive measure.
WEAKNESSES
A reactive approach is taken to lymphedema instead of a proactive one.
Lymphedema treatment related to non-cancer causes is not researched. Beyond compression, knowledge about lymphedema treatment is lacking.
Canadian data surrounding lymphedema prevalence is extracted from American statistics. The number of Canadians/Ontarians afflicted with chronic lymphedema is largely unknown.
Ontario has fallen behind Alberta with regards to the recognition and treatment of lymphedema.
Very few healthcare practitioners are available to treat lymphedema according to International best practices and many who are fully certified do not utilize the full scope of the evidenced based practice guidelines.
Lymphedema training is done in Ontario on a sporadic basis leading to timely training as a barrier.
Lymphedema treatment is not funded except for the cancer-related education centers within large city hospitals. This leaves individuals to pay out of pocket for services at private clinics that may or may not be covered by third-party health plans.
Self-employed, seniors and those without health benefits are left vulnerable to a choice between getting help or paying for necessities such as food or utilities.
Long standing chronic edema/lymphedema can lead to wounds or cellulitis infections and mobility hindrances. These ultimately increase the healthcare burden.
Lymphedema is a source of disability when left untreated. There is a profound inequality in the treatment of lymphedema and access to care.
Evidence has shown in breast cancer related research that quality of life is negatively impacted within lymphedema patient groups.
OPPORTUNITIES
Proactive programs that utilize education and measurable data to detect lymphedema early.
Unlimited research possibilities to obtain Canadian data.
Education of healthcare professionals
Community education programs
Funded or partially funded treatment option exploration.
Consistent assessment and diagnostic protocols.
Equal access to care for ALL who have lymphedema.
Opening dialogue for consistent care pathways for people with lymphedema.
Education for healthcare professionals on all aspects of lymphedema management.
Reducing the healthcare burden associated with complications of lymphedema.
Improving quality of life of individuals with lymphedema.
THREATS
Lack of Canadian based research
Funding models of care put lymphedema lower in priority for care.
The current paradigm of care for chronic conditions focuses on prevention and is not utilized for lymphedema.
There are no consistent assessment or diagnostic tools available for lymphedema.
Cutbacks to existing healthcare pose a great threat to the initiation of funded lymphedema care.
Current lymphedema care providers who retire or migrate to other job positions are not being replaced.
THE PRESENT STATE OF LYMPHEDEMA CARE IN ONTARIO
CONCLUSION
Lymphedema is a chronic condition of swelling that if left untreated can affect an individual’s physical, mental, economic and emotional health. Over the past seventeen years I have had the pleasure to encounter some very resilient people who have advocated for themselves and navigated their way to see me out of their own persistence to conquer their lymphedema and its consequences. While awareness within the academic and health professions is increasing through word of mouth and research, there needs to be more action taken to reduce the burden on the healthcare system, but ultimately the burden lymphedema places on those who must endure it. Call me a dreamer, but this is my vision for the future of lymphedema care.
Ontario will have OHIP funded lymphedema clinics.
Research for care will have more Canadian data to inform practice.
People with lymphedema from all causes will be treated equally.
A proactive focus on prevention and early detection will become the mainstream practice.
Clinicians will collaborate with each other.
Competition of service will be eliminated.
More lymphedema therapists will be educated and available to serve not only urban, but also rural areas.
Lymphedema care will be consistent and follow all best practice guidelines.
Lymphedema care will involve every measure to enable people to manage their swelling on their own.
HOW TO ADVOCATE FOR LYMPHEDEMA CARE
1. Contact your local member of parliament.
2. Join the Lymphedema Association of Ontario
3. Join the Canadian Lymphedema Framework
4. Join lymphedema advocacy and support groups
5. Speak with your doctor about lymphedema
6. Educate others about lymphedema
7. Take part in or create an event for Lymphedema Awareness Month (March)