ES/MCS in Ontario

What you will find in this section:

  • Seeking care for the chemically sensitive in Ontario
  • The Task Force on Environmental Health 2016-2017 – report and analysis
  • The Real Solution: The Ontario Centre for Excellence in Environmental Health project and papers 2012-2013

Seeking care for the chemically sensitive in Ontario

At first as a trickle in the late 1940s, then as a small stream in the 1950s, then as a river, growing faster and broader into the 1970s and 1980s, the number of people who began to present to doctors with severe chemical sensitivity – so severe that it was causing great physical suffering and forcing them into extreme isolation – grew and grew and grew. Today, we know of nearly a million people living with the condition in Canada, which makes this one of the largest groups of severely and chronically ill people in the country. But aside from one diagnosing and treating clinic near Halifax, and one diagnosis-only clinic in Toronto, there are no physicians or facilities to provide basic health care to this huge group of people.

In fact, so massive is this gap that in puts into question the notion that Canadians have a universal health care system. We had one once, but it stayed stuck in a time warp and never made it into the 21st century, to deal with new forms of sickness caused by 70 years of living with a massive proliferation of new chemicals.

This is not for lack of trying by people with this condition. To read the history of their efforts in the province where I live (for Americans, health care is a provincial responsibility here); and to learn about the absolute refusal of successive Liberal governments in Ontario to this date (fall 2017) to implement recommendations of investigative commissions and studies, you can read my Déjà vu All Over Again (pdf link to]. It will also provide you with an analysis of the first report from the ongoing Task Force in Environmental Health, released in late September of this year. More discussion of the task force, and the major study that preceded it, follows.

 

 

The Task Force on Environmental Health 2016-2017 – report and analysis

(Downloadable reports and Varda Burstyn’s analysis below the fold…please scroll down)

In late September 2017, Ontario’s Ministry of Health and Long term Care released the Phase 1 Report of the Task Force on Environmental Health. This task force was created to make recommendations with respect to meeting the health needs of three groups of people whose diagnoses are excluded at this time from care and support: Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS) – a condition of toxic injury. This is where small amounts of toxic chemicals in everyday products set off serious reactions – even life threatening ones – even at levels not noticed by (though still harmful to) others.

Such people often have the “co-morbid” conditions of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM), recommendations for which the Task Force also bears responsibility.

It bears repeating many times that the number of people in Ontario diagnosed with MCS tops 300,00 and with all three conditions combined, 550,000, far out-numbering those with HIV-AIDS or MS, for example. and nine times as numerous as those with Alzehimer’s. The task force – a step in a process whose latest stage began in in 2009 and has had numerous phases – began its work in June of 2016, and was given a three-year mandate. Another report is expected after the next provincial election, in 2019.

To make sense of what this report contains and represent, I have written three items that you will find, just below. It may be helpful to know that, with a couple of other senior colleagues, in 2008 I was the initiator, then eventually the lead overall project consultant of what turned into a multi-year, multi-stakeholder study process. By 2012, that process included significant funding from the health ministry for the collaborative of stakeholders that had developed and included the Association of Ontario Health Centres to establish an “Ontario Centre of Excellence in Environmental Health” (OCEEH for short). This two-year process produced a number of important documents [jump to the docs] that addressed system problems, and, in my view, set the bar for what is required to achieve recognition, inclusion and equity. There was a long, unjustified interregnum between November 2013 and June 2016, addressed in my Déjà Vu piece, below, and then the current Task Force was established. I was a member of the task force until February 2017, when I resigned.

The material I’ve gathered in all the other sections of this environmental health kit will help you to understand what lies behind the epidemic of chemical sensitivity this task force is meant to address. But to understand the content and context of the Task Force itself, I have prepared the following to help people make sense of what led up to the report and what lies ahead in Ontario:

Good But Insufficient: Report Needs Meaningful Gov Action – my short editorial on the strengths and weaknesses of the Interim Report.

Deja Vu All Over Again – History, analysis and context, and the real challenges ahead, showing where the Phase 1 Report stands along a 32-year trend line of government neglect and broken promises.

Recommendations from three Ontario Task Forces on Care and Support for People with Chemical Sensitivity: MCS RECOMMENDATIONS, ONTARIO, 2017, 2013, 1985. This Task Force is the 3rd government study group funded and tasked in the last 32 years – first in 1985, then in 2013 and again in 2016. To understand what really unites or separates the recommendations of the three processes at a glance, read the above piece.

Roy Thompson Hall has adopted a fragrance free policy to accommodate people who are chemically sensitive, showing leadership and a desire for all to “share the air,” thanks to an initiative taken by an MCS activist and their enlightened response.

Now that millions of people have become scent-sensitive, policies such as these are the only way to enable large numbers of people to live, work and play together.

The task force should be addressing issues such as these.

The REAL Solution: The Ontario Centre of Excellence In Environmental Health (0CEEH) Business Case And Supporting Documents – 2012-2013

To learn what was contained in the 2013 reports for that “Ontario Centre of Excellence in Environmental Health” – a proposed network of sites to deliver a comprehensive, systems-based, and likely-to-succeed set of solutions – you can peruse the documents submitted by the Steering Committee for that project in 2013. These proposals are what many patient and provider advocates, including on the current task force, are still striving to have adopted, because these are the solutions that are truly needed.

The Business Case Proposal – Recognition, inclusion and equity: Solutions for people living in Ontario with ES/MCS, ME/CFS and FMSteering Committee of the OCEEH Business Case project, November 2013. This contains the bones of the OCEEH proposed network of services, with estimated costs and staffing, and a phased plan for implementation. Abut 50 pages. Download OCEEH Business Case_Executive Summary

The OCEEH ‘hub and spoke’ model of care delivery – achieving recognition, inclusion and equity. 

Recognition, inclusion and equity: The time is now – Perspectives of Ontarians living with ES/MCS, ME/CFS and FM. Varda Burstyn for MEAO and the OCEEH project 2013. This major report contains the recommendations for which the Business Case Proposal created an operational plan. It presents a new and historic qualitative survey of patients’ experiences in Ontario, their needs and the (yawning) gaps in service, and provides particular analyses of women’s, children’s, and stigmatization issues. It then presents in-depth the proposed model of care and delivery system to address both health and accessibility (disability and human rights) issues for barrier removal across government and the public sector. Download Recognition, Inclusion, Equity: Patient Perspective, Complete 

The proposal for the Ontario Centre of Excellence in Environmental Health was for a network of both specialized and primary care facilities and services – a ‘system within a system’ to house, integrate and build capacity.

The Quantitative Data, Erika Halapy, Epidemiologist, with Margaret Parlor, Statistical Analyst and President, ME/FM National Action Network, 2013. A first-ever compilation and analysis of statistical findings in Canada and Ontario, based primarily on Statistics Canada findings. Download OCEEH_Quantitative Data Report

Chronic, Complex Conditions: Academic and Clinical Perspectives, John Molot, MD, FRCFP, 2013. The clinical appendix to the business case package, this document presented the then current thinking by physicians and researchers, and recommendations for clinical services.

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