We have been advocating and organizing for a system of care with a focus on health needs, disability rights, social service supports and research for Ontarians living with MCS (“ES/MCS”), ME (“ME/CFS) and FM since 2010, some of us much longer than that. In that year, we initiated a major, multi-component study process with Ontario’s Ministry of Health to produce a business case for an Ontario Centre of Excellence in Environmental Health. You can find the business case and it’s research documents here: https://recognitioninclusionandequity.org/resources/.
When implementation of the detailed recommendations of this process did not follow, we pushed for, and participated in a second study process, the Ontario Task Force on Environmental Health (2016-2018), which produced an interim report, Leadership Now and then a final report, Care Now. When its recommendations were also ignored, we consulted extensively on a yet to be released implementation report, submitted to the Minister of Health in 2021 but never released.
After in-depth research and study, both large study projects found that to create care capacity in Ontario and meet needs along the continuum of care, since no care at all is present, many steps were needed. And central to the success of all of them would be the creation of a three-tiered system of care, embedded within our health care system, to provide the expertise, resources and sites for the hundreds of thousands of Ontarians who desperately need such a system to address their health, disability and social support needs. Ontario has been handed
the blueprint for this system by two major study projects; it simply needs to move forward to implementation.
The most detailed version of this blueprint emerged from the first, two-year study process (2012-2013) funded by the Ministry of Health and the Ontario Trillium Foundation to develop a business case for an Ontario Centre of Excellence in Environmental Health. Patient experts from the ME and MCS communities played a leading role in that study. (Read about how this came about and what happened afterwards by clicking here. This model, though without the detailed implementation guidelines – departments, staffing, site prep, sequencing of stages, budget – was again validated by Care Now, the final report of the second study process, led by the Ontario Task Force on Environmental Health.
The three key components of the proposed system of care that we need now are:
This would be both hospital and university affiliated, though medically independent. It would provide advanced clinical care for the sickest patients, develop education curriculum for medical schools, hospitals and post-grad studies, act as a referral centre for other physicians in the province, and develop ongoing policy to ensure capability is present for our people along the entire continuum of care, from primary care to end of life. It would pro-actively liaise with other agencies to advance disability needs and rights. And it would also work to create a research agenda – epidemiological, clinical and basic – and work with the partners best suited to this research. It would be a chemically-safe space for MCS patients and it would be led by physicians with clinical experience in the most advanced diagnostic and treatment methods.
Between six and ten of such clinics are needed at regional centres where specially-trained primary care physicians work in a chemically-safe space to deliver front-line, hands on care to our groups, much closer to home than Toronto. State-of-the-art diagnostic services, treatment plan development, treatment procedures (e.g. IV infusions, sauna depuration), informed prescribing and key allied health professional services (e.g. physiotherapy, chiropractic, acupuncture, counselling or psychotherapy) would also be provided in a safe space. Staff in these clinics would also act as referral sources and supports to local health care agencies, such as hospitals, home care, long-term care and individual family physicians.
Every community needs a minimum of physicians who are “condition-literate” and can at least identify, diagnose and, where knowledge, resources and safe sites are present, treat the three conditions. These physicians, where needed, can liaise with the nearest regional clinic and/or Toronto centre for more advanced assistance and referral.
The blueprint for this system of care remains the model for how Ontario can meet the needs of our people. It is the standard by which we will review and evaluate all subsequent reports by the Ministry of Health. Moreover, we think that advocacy groups representing all co-occurring chronic, complex and environmentally linked conditions – including people with electromagnetic hypersensitivity (EHS), Lyme disease, Long-COVID and mold and mycotoxin illness – have a massive interest in uniting behind this vision if they want effective, appropriate and accessible care – none of which exists in the public system today.
We are now waiting to see whether this vision has been the basis for an as-yet not public implementation report, Laying the Groundwork, submitted by Public Health Ontario to the Minister of health in the summer of 2021.
Click here for a history of the process and links to its key documents. Click here for a link to the major report Putting the Chemicals Back into Multiple Chemical Sensitivity.
