Hundreds of thousands are sick – and after 33 years, Ontario government again declines to implement basic measures of care
“These three environmental health conditions typically have a devastating impact on the individuals affected. Unfortunately, our health care system too often has not helped them to the extent they need. The report of the Task Force sets out a course that will begin to remedy this. I look forward to seeing the Minister’s response to our report, and urge him to respond quickly and decisively. There is a need for strong leadership.“ Neil Stuart, Vice-Chair of the Task Force.
Few people have any idea of the number of people in Ontario afflicted with the debilitating, painful, often co-occurring and even life-threatening conditions of Environmental Sensitivity/Multiple Chemical Sensitivities (about 250,000), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (about 155,400) and Fibromyalgia (about 222,300). But it turns out that, in total, there are a whopping 650,000 of them (Statistics Canada 2010 and 2014 figures are roughly the same). Consider that these numbers place people with these conditions in the top 5 major chronic disease categories in Ontario and in Canada – 9 times more than the number of people living with Alzheimer’s disease, and 8 times more prevalent than Crohns. These sufferers and their families carry a huge burden of illness because in addition to the physical punishments they endure, they also face neglect, inappropriate treatment and stigmatization in Ontario’s health and social service systems; these, in turn, are the results of ignorance, obsolete ideas, inertia and lack of capacity.
For the province as a whole, this number of sick people creates a phenomenal, but unseen drag on the provincial economy and public purse. For it turns out that Ontario pays hundreds of millions of dollars in wasted revenue every year for what’s known as “inappropriate utilization” (aka ignorant, wasteful and even harmful treatment) – money that badly needs to be redirected to do good instead of harm and the amount lost due to lost productivity among patients and families dwarfs this figure.
The report released on Sept. 28, 2017 – though only under pressure from patients and opposition parties, by the Ministry of Health and Long Term Care’s Task Force on Environmental Health – has the potential to make the invisible people living with these conditions visible – at least to the ministry, if not yet to the public, since there was no announcement to publicize the event. The report begins to describe the vacuum in care, social support and human rights that patients with these three conditions face, and makes eight important early recommendations to government to get the larger process of developing care underway. Another report will be submitted in 2019, a long way off, and well past the coming provincial election.
The report recommendations (see below) are all needed and very important – they are preconditions, a foundation if you will, to actually creating care and support services. This also means they are scant – numbering only eight – and insufficient to the larger project. But they are critical first steps. In a nutshell they include the following:
The Minister of Health and Long-Term Care should make a statement recognizing ME/CFS, FM and ES/MCS (chemical sensitivity) – a promise he made, in person and in public, in November of 2014. This should “reinforce the serious debilitating nature of these conditions and dispel the misperception that they are psychological; and it should include a commitment to improve care and education, [and] develop a system of care for people.” This recommendation deserves a mighty cheer and immediate implementation, since it is decades overdue and has so many other important consequences. But, stunningly, the official response that came after the report was released did not include this recognition.
- The report further recommended the government to “fund three academic chair positions, one for each of the conditions, in clinical environmental health at leading Ontario universities.” How can doctors learn about these conditions without education? Answer: they can’t. But, a no-go on that recommendation either.
Refusing to acknowledge reality does not make reality go away. Refusal to act by omission is still a refusal to act.
- The Task force advised the “modernization of the Ontario Health Insurance Program (OHIP) fee code system to ensure all three conditions are recognized.” There is no overstating how important this step is. Without diagnostic and service codes, chemical sensitivity – the one condition not represented already – will continue to be invisible, stigmatized, undiagnosed and certainly untreated. This recommendation has been on the books since 1985. And the Minister’s response? No, thank you.
- The Task Force told the province to fund a process of expert conferral to develop “clinical case definitions and clinical practice guidelines to support standardized, high-quality, patient-centred care.” Again, without these, nothing can happen as far as establishing care is concerned. This recommendation, akin to motherhood, has also been on the books since 1985. The minister’s message in his “Health Bulletin”: the province “plans to provide support for a group of experts to develop consensus on clinical case definitions,” but without any explicit commitment to a specific process, the personnel of the dedicated body, timelines or the all important budget.
- Further the task force recommended immediate policies “to make hospitals and long-term care facilities safe for people with these conditions.” Astoundingly, they are not, and are especially dangerous for the chemically sensitive. The Minister declined to accept this recommendation through the usual tactic of omission, even though such safety is actually guaranteed by disability and human rights law in Ontario.
- Finally, the task force recommended the province continue to fund only two fellowships in care for these conditions, at the modest, diagnosis-only Environmental Health Clinic at Women’s College Hospital, until further recommendations can be delivered regarding health provider education. Please note everyone: this recommendation was accepted, but it was only a renewal of previously funded positions; it was not “net new” anything.
To understand how basic the Task Force recommendations are, let’s draw an analogy: they are like the life-saving oxygen that paramedics administer in an ambulance to keep alive a very badly injured patient until they are able to reach a hospital where more extensive – and adequate – help can be administered. The Task Force should be applauded heartily, therefore, for spelling them out and calling for leadership to implement them. At the same time, this oxygen is only a stop-gap measure. Also needed for survival is comprehensive, intensive care on all fronts – which is to say at all points along the normal continuum of care – to keep the patient alive after getting to hospital, and follow-up care so the patient stays alive.
So what we have in the Task Force is a group of advocates and civil servants who have felt so constrained by the government’s prolonged refusal to implement years of recommendations that they considered they could recommend – at this point – only stripped down, emergency measures. And the Minister and his deputy and senior bureaucrats – probably the real decision makers here – and the Premier, who must have vetted the response, have decided that even the life-saving first aid measures will not be supported. Pull the plug on the patient, let him suffocate, while claiming to be doing due diligence and taking more time – measured in an additional geological eon – to “consider” the report.
In fact this response is so unconscionable that it boggles the mind.
If you understand the history of this task force (again, you can check it out), then this latest response by the government is only the latest in a chain of what now looks like a true “bait-and-switch” strategy – the “bait” being multi-year inquiries and recommendations flowing from them; the “switch” being the government’s repeated refusal to implement them.
A classic ‘bait-and-switch’ maneuver. Photo Credit – Sourceon.com
And the greatest perversity, indeed, tragedy, is that because of the nature of chemical sensitivity, as well as the other two disorders, people who get them at a severe level can’t fight back – they’re too sick, and sick for years and decades! And they can’t raise money for advocacy organizations, because of the myth that they’re hypochondriacs and emotionally troubled, not felled by biophysical disorders. And since both the environmental and women’s movements have never taken up these disorders – very foolishly, in fact, but that’s a story for another blog – hundreds of thousands of people are sick, without care, without public health policies that prevent the toxic injuries that made them sick. Their situation makes a lie of “universal health care.”
And another big red flag…
Photo credit: OneDesk
As well, though beyond the scope of this brief commentary, a striking and important problem with the motivating text and the recommendations – and again, a product of government constraint on the task force – is that they utterly fail on the very environmental health dimensions the task force bears in its name. The report shows disturbing inadequacies analytically, and in terms of measures needed by patients with severe chemical sensitivity. Yet it is the chemically sensitive patients and expert advocates who have driven the quest for government recognition and action since 1985. The severely chemically sensitive suffer the greatest forms of societal isolation and most dangerous lack of access to care, by far. It was for them that the original, if exceedingly modest, Environmental Health Clinic at Women’s College Hospital was first set up in 1996 by a New Democratic and, following on, a Conservative government.
The solutions are at hand, but the government refuses them time and again
What is important to know is that the Ministry actually declined to implement a 2013 plan for how to provide the needed comprehensive care; a plan that emerged from a process the Ministry funded, led by a multi-stakeholder steering committee of physicians, health administrators and expert patient advocates. This process produced an extensively researched and documented business case proposal, based on an extensive community consultation, qualitative and quantitative research in Ontario and other jurisdictions, and presented in an exhaustive supporting report, plus several other supporting documents. This report and the business case proposal provided an overarching, “systems” plan with a proposed model of care and care delivery system, phased and costed at $26 million dollars for implementation over five years. This would amount to about $50 per diagnosed Ontarian as a modest upfront investment – barely a rounding error in the $55 billion ministry budget – the province could save hundreds of millions of dollars every year.
It is a very black mark indeed on the Wynne government that its health ministry did not validate and implement these recommendations when they were first submitted in early 2014, even though promises for fast-track implementation had been made in 2012. Instead, the health ministry delayed any action by three more years, and then it struck yet another investigative body – the Task Force – to begin from square one. Only this time, its recommending body came without a budget or expert staff, and a radically reduced and fragmented mandate.
The government did this despite the fact that both the Conservative and NDP health critics strongly and repeatedly voiced their support for the 2013 recommendations, in the legislature, in public meetings at Queen’s Park and in letters to the health minister.
So the takeaway for the moment: the “small-start” recommendations of this Interim Report are all good and absolutely necessary, as far as they go. They should be strongly supported, and anyone who reads this assessment is urged to write to the health minister and the Premier with this message.
At the same time, the most recent and grotesque refusal to adopt the most basic measures to achieve the stepping stones for access to care is a betrayal of trust. Only a public statement from Ontario’s health minister accepting these recommendations, committing funds to implement them in an expedited fashion, and committing to much more extensive actions in the immediate future based on the 2013 business case recommendations, can reverse course, show good faith and, indeed, competence. A lot of people who can’t mobilize but can vote will be looking for both when they next go to the polls.
One last thing…
There are only a few government processes ongoing right now around the world pro-actively seeking to develop health system responses to assist people who are seriously chemically sensitive and the provincial government in Ontario, Canada is in the midst of one of them. So, what its government task force is doing in this province – or not doing! – is important globally, not just locally, because it could set an example of needed steps for millions of suffering and excluded people. But – as hundreds of thousands wait to see – will it?
Varda Burstyn was the major policy speech writer for the Hon. Frances Lankin, Ontario’s Minister of Health in 1992, and has written and consulted extensively on environmental health. She was the initiator, then lead consultant of the project develop a business case proposal to establish an Ontario Centre of Excellence in Environmental Health in 2012 and 2013.
Thanks to Stephan from https://confinedtosuccess.com/ for the great image!
BACKGROUND: RECOMMENDATIONS FROM THE PHASE 1 REPORT TASK FORCE ON ENVIRONMENTAL HEALTH 2017
Recommendation #1 – Change the Conversation
Recommendation #1. 1 Make a formal public statement recognizing ME/CFS, FM and ES/MCS: The task force recommends the Minister of Health and Long-Term Care make a statement recognizing ME/CFS, FM and ES/MCS. The statement should reinforce the serious debilitating nature of these conditions and dispel the misperception that they are psychological. It should also include a commitment to improve care and education, develop a system of care for people living with ME/CFS, FM and ES/MCS, and provide support for caregivers.
Recommendation #1.2 Establish academic chairs focused on ME/CFS, FM and ES/MCS
The task force recommends that the Ministry of Health and Long-Term Care (ministry) fund academic chair positions in clinical environmental health focused specifically on ME/CFS, FM and ES/MCS. The chairs should be located at three different academic health science centres across the province. A key criterion in selecting/awarding these chairs should be a demonstrated commitment to champion improved care for those affected by these conditions.
Recommendation #1.3 Modernize the K037 fee code to include all three conditions
The task force recommends that the ministry re-initiate the process to modernize the Ontario Health Insurance program (OHIP) fee code K037 in collaboration with physician and patient experts to ensure it recognizes all three conditions.
Recommendation #2 – Develop a Common Understanding of ME/CFS, FM and ES/MCS
Recommendation #2.1 Develop clinical case definitions and clinical practice guidelines to support standardized, high-quality, patient-centred care. The task force recommends that the ministry establish an expert panel to reach consensus on clinical case definitions and clinical practice guidelines for each of the three conditions. The expert panel, which should include people with lived experience as well as input from expert advisors outside Ontario, should meet periodically to review updates in the science on each condition, evaluate the evidence and assess progress in managing the three conditions.
Recommendation #3 – Lay the Groundwork for a Person-Centred System of Care
Recommendation #3.1 Establish detailed clinical care pathways to support the development of an evidence-based system of care. The task force recommends that the ministry provide funds to support the development of clinical care pathways for people with ME/CFS, FM and ES/MCS and map out an appropriate patient-centred system of care for Ontario.
Recommendation #3.2 Make hospitals safe for people with ME/CFS, FM and ES/MCS
The task force recommends that the ministry work with its partners and with expert patients, caregivers and physicians to ensure hospitals comply, as quickly as possible, with relevant accessibility and accommodation legislation. As a starting point, the ministry should work with the Ontario Hospitals Association (OHA) to build on relevant prior work, including the Quinte Healthcare Corporation policy on Multiple Chemical Sensitivities and the guidance for hospital staff contained in Marshall, LM, Maclennan JG. Environmental health in hospital: A practical guide for hospital staff. Part I Pollution prevention, Part II Environment-sensitive care (2001)
Recommendation #3.3 Make long-term care homes safe for people with ME/CFS, FM and ES/MCS. The task force recommends that the ministry work with its partners and with expert patients, caregivers and physicians to ensure long-term care homes comply, as quickly as possible, with relevant accessibility and accommodation legislation. The MOHLTC should work with long-term care provider associations to build on opportunities within the long-term care home renewal process to improve accessibility and accommodation in existing homes and in the homes of the future.
Recommendation #4 – Increase the number of knowledgeable providers
Recommendation #4.1: Continue to fund the Enhanced Skills Program for 3rd Year Residents in Clinical Environmental Health. The task force recommends that the ministry continue to fund this program until the task force makes further recommendations for advanced education specializing in ME/CFS, FM and ES/MCS.