The Myalgic Encephalomyelitis Association of Ontario (MEAO), along with others, has been working on a plan to get proper health care and supports established for the hundreds of thousands of people in Ontario who are affected by the “often overlapping, commonly disabling and sometimes life-threatening conditions of ES/MCS (Environmental Sensitivities/Multiple Chemical Sensitivity), ME/CFS (Myalgic Encepahlomyelitis/ Chronic Fatigue Syndrome) and FM (Fibromyalgia).”
A quick, easy summary document of the features and benefits of the OCEEH business case proposal for a comprehensive network of care and support has been sent to every MPP in Ontario. Here it is for you too (copied from the PDF 2014 OCEEH IN A NUTSHELL), so you can encourage your local elected representatives to support it in Ontario, and to support similar plans everywhere else in the world:
ONTARIO CENTRE OF EXCELLENCE IN ENVIRONMENTAL HEALTH (OCEEH)
‘IN A NUTSHELL’
“Five percent of Ontario’s population is affected by the often overlapping, commonly disabling and sometimes life-threatening conditions of ES/MCS (Environmental Sensitivities/Multiple Chemical Sensitivity), ME/CFS (Myalgic Encepahlomyelitis/ Chronic Fatigue Syndrome) and FM (Fibromyalgia).
As of 2010, over 568,000 Ontarians had been diagnosed with one or more of these conditions. This number grew from 439,000 in 2005, as reported in Statistics Canada’s Canadian Community Health Survey. It demonstrates prevalence comparable to diabetes, heart disease, cancer and effects of a stroke. These are very widespread conditions, and the 2010 figures are likely underestimates.
Recognition, diagnosis and treatment of these serious conditions are absent from Ontario’s health care system at present. Even though a commission of enquiry recommended services be put into place for ES/MCS as long ago as 1985, exclusion, discrimination and stigmatization of those living with these conditions have been the rule; and Ontario has lost physicians seeking to help these groups.
Currently, well over $150 million per year in health system costs is spent to service these patients in a fragmented, inappropriate and/or harmful fashion – i.e. is completely wasted. This does not include many high costs to society such as preventable disability costs, lost earnings to patients and families, lost taxes – these additional costs are estimated to range into the billions. Also, this does not take into account the often crippling, uninsured medical costs borne by these patients and their families alone, such as drugs, special nutrient supports, or the provision of safe housing.
In October, 2013, a major, two-year study funded by the Ministry of Health and Long Term Care and the Ontario Trillium Foundation submitted a Business Case and extensive supporting appendices to the MOHLTC outlining a plan of action – ‘solutions’ – for a system of care, provisionally called the Ontario Centre of Excellence In Environmental Health (OCEEH)
The hospital- and university-affiliated OCEEH would:
– develop the continuum of care from prevention and primary care to highly specialized care and long term care for these groups
– address the social determinants of health, including shelter and supportive housing – a critical component
– facilitate a cultural change to acceptance for these conditions as chronic disease and disabilities
– build or redevelop safe health care facilties where those with ES/MCS can receive care
– influence social policy to equitably include and address the needs of these groups
– create and support a leading-edge research and education infrastructure
Costs will be offset by significant savings thanks to timely access to the right care at the right time.
STRUCTURE AND FUNCTIONS THE OCEEH
– PILLAR ONE develops a system of care to meet the full range of health and social needs of individuals with these conditions – people-centred care, integrated, coordinated, comprehensive, and provided by interprofessional teams.
– PILLAR TWO works to remove systemic barriers to health equity so that patients and their families can lead full and productive lives. The goal is to ensure that these conditions are recognized as chronic diseases and disabilities with normal supports so that are treated in an equitable manner to other major chronic conditions; and to help government and health care understand and improve the impact of many common-use chemicals on human health.
A ‘PYRAMID’ AND A ‘HUB AND SPOKES’ – 3 LEVELS
– A specialized ‘hub,’ hospital- and university-affiliated, providing diagnosis and treatment for the most complex cases with referral to the hub by any and all physicians; leading a research program; developing education for health professionals, public sector staff, the general public and patients; and policy department to work on barrier removal and general policy alignment.
– 6-10 specialized primary care ‘spokes’ linked to regional CHCs, directly providing trained primary care and serving as resources for local primary care physicians
– Linkages with, and education and support for, individual primary health providers throughout the province, eventually supporting all providers for basic diagnostic and care capacity.
OBJECTIVES OF THE OCEEH
RECOGNITION INCLUSION EQUITY = NORMALIZATION OF CARE AND SUPPORT
– People receive appropriate, evidence-based, comprehensive, interprofessional primary health care with appropriate health and social services; and access to trained specialists for complex cases
– Services are available at the right place, at the right time, from the right provider.
-All health professionals receive formal training, integrated into their foundational education, and all primary care providers are trained to assess, diagnose and treat/manage these conditions
– Services are delivered using protocols and guidelines, informed by evidence; where evidence does not yet exist, a major research program will contribute to developing new knowledge
– Management for more complex conditions is available closer to home
– Safe treatment facilities are created for those with ES/MCS
– Efforts to create safe housing , including emergency shelter, supportive housing, long-term care homes and safe hospital reception, are a top policy priority
– A spirit of enquiry, innovation, and evaluation pervades.
RESULTS OF THE OCCEH
– The patient experience will be transformed – patients will have access to effective, appropriate care and will no longer have to encounter multiple layers of stigma and discrimination
– Serious illness and injury among those who are at the greatest risk of declining health can be prevented and/or and delayed and/or mitigated, with benefits to patients, families, communities and to the province as a whole
– Recent investments in strengthening the primary health care system will be leveraged – the majority of patients will receive care from their primary care provider, who has acquired the required skills and knowledge
– Effective and available social supports, critical to these groups, will be built on and adapted
– A learning environment that can have positive spin-offs for many chronic conditions will be fostered
– Value and sustainability will be delivered through efficient use of resources, including through prevention and appropriate care for patients with environmentally-linked conditions.
Ontario Centre of Excellence in Environmental Health Interim Steering Committee
c/o Association of Ontario of Health Centres
500-970 Lawrence Ave W, Toronto ON, M6A 3B6
For more information – 416-735-9886
This is long overdue, and needs a lot of support to make it happen.
Please share, write, and make calls voicing your needs and support.
In early November, MEAO is holding a Community Engagement Day Event at Queen’s Park. On the agenda is a status report from the Minister of Health, the Premier has been invited and supportive health officials and OCEEH interim steering committee members will provide updates on a number of aspects of the project. There will also be several MPPs in attendance delivering messages of support.
From the email MEAO sent out:
HOW YOU CAN HELP TO GET POSITIVE ACTION FROM GOVERNMENT
Support from patients, families, friends, health professionals and other interested citizens is unequaled in ‘message power’ to politicians. Now is the time to make your voice and your needs known. So at this critical juncture please take a moment to let your politicians know
· about your situation and needs
· that this proposal is critical to your well-being and
· that you expect significant and positive action in approving and implementing the OCEEH business case proposal.
If you feel well enough, or if your family or friends can help you, please phone, write, fax or email, with a request for support to the OCEEH business case, and, if possible, your own story and your needs to:
· the Minister of Health and Long Term care and ask him to pass the business case proposal for the Ontario Centre of Excellence which has been in his department since last October. Contact information:
Hon. Eric Hoskins, Minister of Health and Long Term Care
10th Floor, Hepburn Block
80 Grosvenor St
· and to your own MPP and ask him/her to support the business case proposal for the Ontario Centre of Excellence in Environmental Health, already with the Minister of Health and Long Term Care.
To obtain the email address and phone number of your own local MPP, go to:
Contact MEAO for more information:
Previous blog posts related to this initiative:
Report: RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW
Ontario Centre of Excellence in Environmental Health Project
I would appreciate any help you can give me on purchasing a winter coat for my sister, who has MCS. She cannot tolerate wool or down. She finds most coats are overloaded with chemical odours. We live in Toronto where one needs a warm winter coat.
So sorry to hear of yet another person who is freezing because of a lack of safe clothing. There are far too many of us. Please give your sister a warm cyber-hug from me.
Coats and clothing are a real challenge, one that I haven’t been able to solve myself – I don’t tolerate synthetics or cross contamination (2nd, 3rd hand fragrances for example).
Plus a lack of finances, shoppers who could purchase, order, detox, and or return if needed…
When I used to have a washing machine, I could detox some coats by washing them several times (many coats do stand up to this, except for losing some of the water repellant coatings they may have had – I experimented on quite a few from Value Village and Goodwill before they were using air “fresheners” everywhere).
I have been using a really old, thin, (and ugly) synthetic coat I had for dog-walking, as it was the most detoxed one I had, but I still needed to dedicate a thick cotton shirt to wear under it so as to not contaminate my safe clothes, and I usually need to wear my mask outside anyway, if I go further than the bird and squirrel feeders.
If I wear this coat for longer than 15 minutes, my fibromyalgia is really triggered, plus I get really cold, as it isn’t a thick coat.
Some day I’d like to order an organic wool coat. I have no idea about what the least toxic synthetic or cotton coats might be.
Maybe someone who reads this has some ideas?
Here’s a great resource for textile issues, you can look into certifications and maybe you can find some manufacturers that way. However, as a recent comment mentioned, most coats do have the toxic water resistant finishes on them these days… http://oecotextiles.wordpress.com/