What you will find in this section:
- Seeking care for the chemically sensitive in Ontario
- The Task Force on Environmental Health 2016-2017: analysis of its report and, in the side bar, see its recommendations.
- The words of sufferers: what it’s like to seek care for severe chemical sensitivity, or other health problems when you have severe chemical sensitivity. These voices come from a ground breaking community consultation and qualitative study done in Ontario in 2012, included in Sections 3 and 4 of Recognition, inclusion and equity – The time is now: Perspectives of Ontarians living with ES/MCS, ME/CFS and FM (Varda Burstyn and MEAO, 2013).
- The Real Solution: The Ontario Centre for Excellence in Environmental Health project and papers 2012-2013
If you’ve landed on this page to learn more about the Ontario process, but don’t think you know much about chemical sensitivity, why not start on the Chemical sensitivity page? Click here to get you there.
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 within our public health care system.
Take a look at these numbers:
There has, however, been an official recognition of the disabling aspects of severe chemical sensitivity, medically and legally reflected in policy for the Canadian Human Rights Commission, many provincial human rights programs, and very explicitly in Ontario. With this comes a theoretical conferral of basic human rights as defined under Canada’s Charter of Rights and Freedoms, and disability rights within that framework. The problem is that when no-one – including employers, schools, worker’s compensation boards and even human rights commission mediators and court judges – know about a condition, it is nearly impossible to get equal treatment before the law — any law.
In fact, so massive is the gap in medical, health, social and legal services where chemical sensitivity is concerned that it puts into question the notion that Canadians truly have a universal health care system. We had one once, perhaps. 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.
In the sidebar you can find the testimony of patients who have struggled to live with severe chemical sensitivity here in Ontario. You can read about their many negative experiences; but, important, you can also read about how positive experiences were with trained physicians.
Here, let’s not systemic problems that exist in the current state:
- Family doctors are the gatekeepers to the rest of the system. Yet there is no training for physicians in chemical sensitivity and there are no dedicated doctor’s offices that are safe for the chemically sensitive. So going to the doctor can make you more sick than before you went; many people stop going. Going to a hospital is even worse. Going to a hospital can kill you.
“The first visit has to be in the office, then they’d decide if they can do a home visit after. They’re not open to Skype or anything like that. They don’t have a fragrance-free office, and they said they can’t guarantee safety for a home visit, and they won’t even do the home visit unless I come into the office. ‘What we can offer you is an appointment to come in to see us where we’ll discuss it.’ I said, ‘so you’re offering me a chance to become completely disabled and possibly not be able look after myself … you’re offering me a chance to be assaulted, basically.” LMS MCS
- Even completely disabled sufferers can’t get appropriate supports in daily life, supports accessed by all others with recognized disabilities.
“Right now, I am totally stuck in bed. … My family doctor and I are frustrated with CCAC – they don’t really listen to what I need. They only give ten hours for someone that has no family support and is bed-ridden. Basically I get a diaper changed every 24 hours — I am going to try not to cry here. I have to sit in my urine, which is very uncomfortable to sit in urine for 24 hours and wait for someone to come and change me. For eating I get one meal a day. … That is basically what my life looks like now. I keep telling people I need fourteen hours but they say no, that ten is the limit.” TJ FM ME MCS
- Family physicians are supposed to help coordinate and navigate care through a complex system of specialists on the one hand, and social supports on the other. But few do. Some family teams have social workers for this function, critical to peole who are often cognitively impaired and unable to easily communicate. But many of these folks are also ignorant and incapable.
“When I got to a point where I couldn’t help myself anymore and I needed help. I asked the doctor if I could see a social worker. … That is a really hard step to take, because you’re admitting … you’re really sick and as hard as you’re trying you can’t get it together. What’s important in life is people and you can’t get to the people because the basics of life are taking what you have … You finally get the courage to go to a social worker and then … how humiliating it was and how I was spoken to! … This happened with three different social workers so I’m not just saying one. I had to have somebody with me for the social worker to be nice. I don’t know what else to say – to be professional – maybe that’s a better word.” MaryLou ME FM MCS
- Though having a safe breathing envelope is considered the absolute, rock-bottom precondition to stabilization and improvement – which means that a safe home is really a medical device, not just shelter from the storm – there is no recognition of this in any place in Ontario: not in medical practice, or social housing, or medical modifications to homes tax exemptions. And this makes the very act of finding shelter a complete nightmare for a great many people who live with chemical sensitivity.
“That was a terrible journey. …It progressively became worse as I deteriorated. But … the City of Toronto Housing, when they got letters from my doctor saying I needed to be transferred, and even to the point where the doctor said I was concerned even about my life, that I could I die in … the available housing … Because I didn’t fit into their criteria that was, like cancer, they said the only thing they could do was put me on the waiting list which is ten years, that I couldn’t get special consideration for transfer. … I was … being kept in relapse because I couldn’t get to a place where I could be stable. So that was psychologically really awful, being in relapse and knowing that you don’t have to be. … It’s been very sad. Almost every avenue where I’ve needed support or help, the initial and continued response was no response that helped me get a foot up.” MaryLou ME FM MCS
This truly egregious situation of a void in care and support across the continuum of care and across systems 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 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
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. Such people often have the “co-morbid” (co-occurring) conditions of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM), recommendations for which the Task Force also has responsibility.
It bears repeating many times that the number of people in Ontario diagnosed with MCS tops 250,000 and with all three conditions combined, exceeds 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 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 represents, I have written three items that you will find on this site:
- The first is “Varda’s quick take” on the task force’s 2017 recommendations.
- The second is “Déjà 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.
- The third is a compilation of the recommendations from three seperate and distinct high level Ontario study processes on care and support for people with chemical sensitivity – MCS RECOMMENDATIONS, ONTARIO, 2017, 2013, 1985. Note: this task force is the 3rd government effort funded and tasked in the last 32 years – first in 1985, then in 2013 and again in 2016.
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 FM – Steering 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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