Some hospitals around the world are developing fragrance-free policies and other less toxic practices, but most health-care environments can still be dangerous places to be for people with MCS/ES, presenting enormous challenges if health care services are needed, as I quoted from the ES-MCS Sensitivities Status Report in the post Canadian Statistics on MCS/ES.
“For ES-MCS sufferers the ideal of ‘patient-centred care’ is currently in stark contrast to realities within the health care system. Knowledgeable healthcare professionals and support workers are so few as to be virtually inaccessible most of the time. For moderately or severely chemically sensitive persons, physicians’ offices, clinics and hospitals commonly are unsafe places to wait, consult, or undergo procedures because patients can be exposed to many symptom triggers emitted from furnishings, cleaning and laundry products, disinfectants, and personal care products on staff or other patients, making their conditions worse. Fragrance/scent-free hospital, home care and rehabilitation services are very rarely available, and there are no chemically safe emergency shelters. Consequently, patients with severe chemical sensitivities may avoid seeking care, risking further deterioration and chronicity, thereby being “caught between a rock and a hard place.”
It can be a difficult decision for many of us when we experience symptoms, whether or not to have them checked out. Sometimes we wait too long, other times we just can’t go because the going is too dangerous for our health. Toni Bernhard touches upon it in Psychology Today, although MCS/ES adds another layer of complications to the decisions: “5 Tough Choices You Face When Chronically Ill or in Pain”
If a trip to the hospital is required, it’s best to be as prepared as possible. If it’s not an emergency, then your choice of the following documents can be forwarded and discussed in advance. Otherwise, carrying paper copies or discs with us at all times could be warranted, in case of emergency.
The following is a list of the best protocols and websites I’ve found, with important resources and documents for people willing and able to take the risks to advocate for themselves or to provide to others so they can do it on our behalf if we are not able.
Hopefully you have the time to go through them and choose what is most suitable for you before the need arises. With any luck, you won’t need them, but it’s good to be prepared “just in case”. It will take a long time to prepare your local health care providers with protocols to reduce harm (we’re nowhere near the eliminate harm stage) in advance.
A lot more needs to be done, because until the systemic issues are resolved, for too many of us, it’s far too dangerous to try to access health care. The necessary negotiations are not feasible when severely disabled, ill, and in need of immediate care that does not exist. These resources require the ability to work to implement. And there’s no guarantees that if you make progress once, the progress can be built on the next time, as far too often, it’s a start all over again from the beginning process.
Health Information Template Document
The following is a template of the health information that needs to be provided to the hospital at the start of consultations with them and prior to hospital admission. This list will need to be refined for each individual.
A single page SUMMARY REACTION TABLE (last page of this document) will provide hospital staff with a quick reference of your particular reactants. The list can flag where additional important information is detailed within this document.
.
HEAL of Southern Arizona’s MCS Accommodations Letter
.
Hospital Protocols
(many resources – revised link using the way back machine)
Accessibility – Multiple Chemical Sensitivities at Quinte Healthcare
Environmental health in hospital: A practical guide for hospital staff.
Part I (pdf) Pollution_Prevention
Part II (pdf) Environment-sensitive Care (2001)
Guideline of the Austrian Medical Association for the diagnosis and treatment of EMF related health problems and illnesses (EMF syndrome). Consensus paper of the Austrian Medical Association’s EMF Working Group (AG-EMF)
Health Care Without Harm is working with hospitals to choose safer cleaning products and less toxic disinfection methods, and to adopt integrated pest management and fragrance-free policies that improve indoor air quality and promote health.
MCS Visitors Guidelines 2008 from ASEHA Qld
It’s also a good idea to have a sign to put on your hospital room door
(download the document here: Hospital STOP door SIGN ).
Sign with text that can be altered to suit individual needs
Other links from Air Quality and Accessibility in Health Care; Why Aren’t All Health Care Providers Fragrance-Free?
Caring for People with Multiple Chemical Sensitivities: Creating Access to Health Care by Louise Kosta (revised link)
Fragrance Free Implementation Kit for Health Care Facilities
IEQ Indoor Environmental Quality – A project of the National Institute of Building Sciences (NIBS) with funding support from The Architectural and Transportation Barriers Compliance Board (Access Board)
DESIGNATED CLEANER AIR ROOMS (PDF)
Environmental solutions for the healthcare sector and support to create better, safer, greener workplaces and communities.
Added March 14th
“Hospital Accommodations of Electrically Hypersensitive Patients in Sweden”
“This English-language document … lists a total of eight Swedish hospitals that provide facilities suitable for EHS patients.”
http://www.eiwellspring.org/ehs/HospitalAccommodationsOfEHSPatientsInSweden.htm
Seriously "Sensitive" to Pollution 
Personally, I have found that no doctor’s office, clinic, or hospital in Toronto and vicinity is accessible for someone with severe electrical hypersensitivity and the College of Physicians and Surgeons of Ontario is not requiring anyone to accommodate this disability. Therefore, going to obtain life or death services in a crisis could cost one’s life. Fortunately, there are others working in wellness who recognize this extreme peril and fill the gap with their essential services.
There is definitely a long way to go…
Accessing alternative wellness practitioners isn’t always an option either, as they too can have harmful habits or be priced out of reach.
There are baby steps of hope though, with more places adopting fragrance free policies, as a first step.
Health Care Without Harm and I think another org I linked to are working on more healthy environment practices too, but I don’t know if EHS is on their radar or not.
Accessing fine wellness practitioners can easily be done from one’s home; many have 10% of their services regularly tithed as a courtesy, especially when the case is someone who would not make it without receiving their TLC.
For travelling to receive health services, the Toronto Transit is not accessible due to wireless reporting navigation systems, EMF on the subway from the “third rail” and in above ground vehicles second-hand non-ionizing radiation from other passengers’ cell phones; even Wheel-Trans vehicles that provide door-to-door “accessible transit service for persons with physical disabilities” are not adapted for someone with EHS because their drivers use cell phones for their work and when I last checked this could not be changed.
Bicycling on side streets during daylight off-peak times and walking are the safest; when on foot, one can cross the street when seeing another approaching with a cell phone held to the side of the head.
BTW, symptoms of radio wave sickness first documented among radar technicians during the Second World War resemble those now associated with electromagnetic hypersensitivity.
Good to know Dianne…
MCS strategies are more difficult to solve sometimes than EHS solutions. For example, it’s simple to turn off a cell-phone, but to get chemical laundry and personal care products out of clothing, hair and body can take weeks of effort if a person uses them on a regular basis. Clothing can be recontaminated in a dryer that is full of chemical residues and require air drying, but in a home or office environment where incense, essential oils or scented candles are used (some alternative health practitioners seem to think these are atmospheric necessities) the air is no better. Some people don’t have the outdoor space to dry clothing, nor the desire to go to all the trouble of decontaminating themselves. Inviting them into our homes can contaminate our safe space for an extended period of time, or even permanently if proper protection isn’t made, like covering furniture with non-permeable materials to keep 2nd and 3rd hand chemicals from soaking in.
Detoxing a space in a hospital or medical environment should be a lot easier to accomplish, and with proper ventilation and filtering techniques, the air can be made tolerable, or oxygen can be provided. And, as one can return home to one’s “safe space” (provided one has found such a medically required space) then a short term visit elsewhere can often be handled.
I believe that the National Institute of Building Sciences IEQ Indoor Environmental Quality Project DESIGNATED CLEANER AIR ROOMS does deal with cell phones and EMF issues too. Perhaps that and the AU document from Dr Magda Havas’ site would be the ones to use for those who have EHS as the primary dx?
Educating alternative health and wellness practitioners is also required.
Essential oils DO NOT CAUSE MCS PROBLEMS. Some SPECIFIC oils can cause health damage and most cause damage at full strength (there are some exceotioms, which in fact can be used full strength with no danger). Essential oils are NOT the only thing that is usually contained in a bottle labeled “XXXX essential oil. Ingredients: XXXX essential oil.” These bottles often contain several other substances, including possible pesticides. Essentials must be “ES/CS tested” and should have the spectometry results for each oil available at their website. Experts can evaluate the spectomtry for purity however if it is available then it is unlikely to be contaminated like at least 80% of EO brands are. Obviously, the EO should also be organic. Find legitimate brands of essential oil, then inform the business owner that it is making you sick and provide them with information about the testing and a brand or several which is tested and which passes inspection. Before doing this, also check whether the specific oil they use is safe for diffusion when it is pire. Rosemary oil, for example, may cause seizures in eplectics. (But NOT in people with MCS! If it does then it is not organic essential oil in that bottle, and only zero other ingredients.)
Unfortunately you are uninformed on this issue, and your opinion can seriously harm those who do suffer serious adverse effects from even organic, pure, additive free concentrated oils.
Please read the research I’ve posted to the essential oils and natural fragrances posts (and in the post comments) as to how and why people with MCS/ES can have adverse effects.
Also, people with MCAS, migraines, respiratory problems, and allergies can have life threatening effects from the VOCs they emit and the pollutants they produce (in addition to the effects of sensitizers)
EOs should not be used in public any more than other fragrances or meds should be infused through the air.
If you care about people with MCS/ES, then please don’t gaslight or throw under the bus the people who are having serious adverse health effects and accessibility barriers due to these products (be they organic or not).
fyi…
In the mid 80s, I broke out in hives after exposure to properly diluted organic rosemary oil that had been added to organic massage oil, and had a very hard time breathing after.
Eating rosemary has never done that.
Many people I know (myself included) have sometimes severe MCS related neuro effects from inhaling even 2nd or 3rd hand EOs (and fragrances or other VOCs and pollutants).
MCS groups are full of people who have discussed the adverse effects.
I have a letter from my PCP based on the one by HEAL AZ or NM, detailing what i need and why. No one follows it. I have printed copies of hospital protocol. No one follows it. Why? MCS is not real. The E/R doctors ask me to take off my mask to make their job faster, no one will give me O2, only paramedics read the letter and comply. In the hospital they wanted a full psych exam so i left.
UGH!!! What about their oath to “Do No Harm”???
I wonder if the websites like Health Care Without Harm, Ontario College of Family Physicians Environmental Health Committee, Practice Greenhealth, and The Canadian Coalition for Green Health Care can be used then, since they are all pushing for a healthier environment and describe the problems the general population also experiences from the same things that harm us?
More info from their peers can get the ball rolling…
BUT this works best when we have the time and energy to start advocating (years?) before we need healthcare… It’s kind of like being expected to teach a surgeon how to operate on our appendix if we show up in Emerg…
Hospitals Need a ‘No-Fragrance’ Rule
http://drclaudiamiller.com/2013/04/02/hospitals-need-a-no-fragrance-rule/
“Claudia Miller, M.D., M.S. is a tenured Professor in Environmental and Occupational Medicine and Vice Chair of the Department of Family and Community Medicine of the University of Texas Health Science Center at San Antonio (UTHSCSA). She is also founder and director of the South Texas Environmental Education and Research (STEER) Program, the only medical school curriculum to offer hands-on, experiential training in environmental health, public health, and international health at the US-Mexico border. STEER has been the recipient of national and state awards for excellence in environmental and medical training.
Dr. Miller co-authored a landmark report for the state of New Jersey on chemical susceptibility, for which the state received the American Association for World Health’s Macedo Award, and a professionally acclaimed book, Chemical Exposures: Low Levels and High Stakes (2nd edition, John Wiley and Sons, Inc., New York, 1998). She has authored or co-authored numerous book chapters and peer-reviewed publications on the health effects of low-level chemical exposures.”…
Here is a brief article about a hospital in Germany creating 2 rooms specifically for EI/MCS patients. The article references the time frame as 2011, so I have no idea if the rooms are still used,or if the idea has been expanded, but it shows what can be done, if a healthcare facility wants to do it. http://www.csn-deutschland.de/blog/en/hamburg-hospital-offers-rooms-for-patients-with-mcs-and-environmental-illness/
Thank you for sharing this here! I hope they were able to address everything well as access to healthcare should not be such a big challenge for us
The David Thompson Health Region (Red Deer, Alberta area) has developed a protocol for people with MCS who need to stay in hospital. It provides information about the condition and some guidelines to minimize exposures likely to occur in a hospital setting. If you are going to be in the hospital, show this document to your doctor as it will help you to identify your needs. It can be a reference document regardless of which health region your hospital belongs to.
David Thompson Health Region: Care of Patients with MCS
Click to access DTHR%20MCS-Protocol%20Feb%2009.pdf
David Thompson Health Region: Scent Free Workplace
Click to access DTHR%20Staff%20Policy.pdf
Here’s an example of how a health-harm-reduction policy could be written and enforced (once they add laundry products and essential oils to the list):
Scent-free Environment
All persons who work in, attend as patients of, or visit Kingston General Hospital, have an obligation to help maintain a scent-free environment.
Policy
“All staff, patients, and visitors will:
Refrain from wearing cologne, perfume, scented personal care products such as body lotions, sprays, and powders, scented deodorant and hair care products, and aftershave lotions (add , laundry products, and essential oils); avoid bringing in scented flowers including but not limited to: Freesias, Lilacs, lavenders, lilies (including day, tiger, Easter Lilies, lily of the valley, and star gazers), Hyacinth and Peonies; refrain from bringing scented air fresheners or personal hand lotions from home.
Fragrance –free hand lotions are available at the hospital.
Staff will advise all persons entering the hospital about the scent-free policy and educate all persons entering the facility about the health effects of scented products.
Patients who are wearing scented products may be asked to wash and/or change their clothing.
Visitors who wear scented products will be asked to leave.
Security will be involved as needed.
Staff who are wearing scented products may be asked to leave the area, wash, and/or change their clothing.
Staff who show disregard for the scent-free policy will face appropriate disciplinary action.
Suppliers will be notified of our policy and our mandate to purchase scent free products wherever possible.
The public will be advised of our policy through the media, and other venues such as appointment requisitions, and scent free signage posted throughout the hospital.”
http://radiology.queensu.ca/education/radiology/handbook/scent
RECOMMENDED APPROACH TO CARE OF HOSPITALIZED PATIENTS
WITH MULTIPLE CHEMICAL SENSITIVITIES (MCS)
Ann McCampbell, MD
Erica Elliott, MD
http://annmccampbell.com/publicationswritings/publication-2/
I have found this resource tho I have not done all the things I know I need to do to protect myself should I need to go to hosp… I started looking around and found this.
Click to access MultipleChemicalSensitivities-CareofPatients.pdf
My specific search was mcs and chemotherapy … does anyone know if it is harmful for mcs people to be around a person who is getting chemo?
I have seen some people mention that they got sick being around someone who was getting chemo. Some others have not been affected.
Found this hosp in Bellville talks about mcs
http://www.qhc.on.ca/multiple-chemical-sensitivities–p279.php
Thank you Linda for your response. I guess there is not a hard and fast answer and it may depend on when the last chemo treatment was and my level of toxicity at the time of a visit. I did notice in the link I posted above that one hosp requirement for mcs was to be far from chemo treatment.
I also notice quite some time ago I think in the mask section one person stating at least they did not have cancer… I looked up mcs and cancer and found only one reference to it in a study done in 1998 I believe… can’t seem to find any body to the study at this point here it is
Multiple chemical sensitivity syndrome, responsible for development of …
https://journals.lww.com/eurjcancerprev/…/Multiple_chemical_sensitivity_syndrome,.40….
Multiple chemical sensitivity syndrome, responsible for development of cancer. Medenica R; Janssens, J; Tarasenko, A; Powell, D; Corbitt, W; Lazovic, G; Jocic, …
in case we have some internet sleuths here :) may well be it is gone because it made no sense or maybe because it made sense…
The Province of Ontario’s Ministry of Health and Long Term Care’s Environmental Health Task Force Interim Report on ME/CFS, FM, and MCS/ES (2017)
The link to the final report is in the comments there too.
Disability (Ontario Human Rights Commission)
The Code protects people from discrimination and harassment because of past, present and perceived disabilities.
“Disability” covers a broad range and degree of conditions, some visible and some not visible.
A disability may have been present from birth, caused by an accident, or developed over time.
There are physical, mental and learning disabilities, mental disorders,
hearing or vision disabilities, epilepsy, mental health disabilities and addictions,
environmental sensitivities, and other conditions.
http://www.ohrc.on.ca/en/code_grounds/disability
Relevant policies:
Policy on ableism and discrimination based on disability (2016)
http://www.ohrc.on.ca/en/policy-ableism-and-discrimination-based-disability
Policy on environmental sensitivities
(Canadian Human Rights Commission 2007)
Click to access policy_sensitivity_0.pdf
…
From ARCH Disability Law Centre and the Canadian Environmental Law Association (CELA), September 2019
“They also face significant stigma and discrimination within the health care system, in the workplace and in society at large.”
…
“The more than half a million Ontarians of all ages living with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and environmental sensitivities/ multiple chemical sensitivity (ES/MCS) face overwhelming barriers accessing high quality, appropriate patient-centred care.
Despite the large number of people affected by these devastating, life-altering medical conditions, there is a discouraging lack of: recognition and understanding of their impact and severity; knowledge about their underlying causes and treatment; effective clinical care pathways; and knowledgeable care providers.
People struggle to get the care, support and accommodation they need.
They also face significant stigma and discrimination within the health care system, in the workplace and in society at large.”
…
Read the Report to see it all.
http://www.health.gov.on.ca/en/news/bulletin/2017/hb_20170929.aspx
“3. Conclusion While there has been significant research and study into barriers to include persons with EH disabilities, critical obstacles remain.
Seeking help in the health system, trying to find and/or retain adequate housing or employment, entering public spaces, shopping, or using public transportation, limit the inclusion of persons with EH disabilities in our communities.
Much more needs to be done to acknowledge the significant hurdles faced by persons with EH disabilities.
There are nearly 750,000 Ontarians affected by EH disabilities. A disproportionate number of them live in poverty and poor health. They face stigmatization and are marginalized. They often live in inadequate housing or are unable to work, often in the prime of their lives.
Ontario is clearly failing to address a serious problem.”
…
4.2 Recommendations
These would include, but are not limited to, public transportation providers, school boards, and the private sector.
For example:
a. All provincial ministries should consult on and revise their Statements of Environmental Values (as required under Ontario’s Environmental Bill of Rights) to achieve procurement policies, workplace scent-free policies, and other means to reduce environmental triggers in their workplaces, with particular focus on addressing front-line/public-facing departments and services.
…
https://cela.ca/the-legal-rights-and-challenges-faced-by-persons-with-chronic-disabilities-triggered-by-environmental-factors/
…
“People living with ME/CFS, FM and ES/MCS experience stigma in many non-medical contexts – both formal and informal – and this stigma has a significant negative impact on their quality of life. For example, landlords, employers, friends, family or caregivers are often skeptical about the severity and impact of their conditions.”
…
“Stigma has a devastating effect on Ontarians living with ME/CFS, FM and ES/MCS and their families”
“For all three targets of the awareness campaign – general public, health care facilities and primary care settings – the purpose is to raise awareness of the conditions and their disabling impact on the people who have them.”
Recommendation 1.1
Develop awareness materials that target the general public and specifically engage priority groups, starting with employers and landlords.
The task force recommends the ministry support the development of materials that can be widely disseminated to the general public over time.
The task force also suggests that the ministry work with government partners to communicate the key messages widely and encourage appropriate accommodation. (SStP note: accommodation is also the law)
~ final report of the Task Force on Environmental Health which was completed in Dec. 2018 and released in May 2019
But… there has been no action, so the stigma and systemic exclusion continue
…
~ The Canadian Human Rights Commission’s Medical Perspective on Environmental Sensitivities (2007)
…
The Canadian Human Rights Commission’s “Environmental sensitivity and scent-free policies” (2019)
“A scent-free policy is similar to other workplace policies such as anti-harassment policies.”
People who have allergies or sensitivity to certain products may have a bad reaction to a much lower level of chemicals, perfumes or environmental triggers than the average person.
Their reaction is a medical condition. It is a recognized disability. People with allergies or environmental sensitivity are entitled to protection from its cause.
The Canadian Human Right Act protects people with allergies or environmental sensitivities, like any other disability.
Employers and service providers must ensure that their facilities are accessible and safe. In the case of environmental sensitivities, this means:
…
https://www.chrc-ccdp.gc.ca/eng/content/policy-environmental-sensitivities
One comment I was in the Quinte hosp mentioned and linked about I had read the link before going there … I was not sick. I specifically wanted to know about their care of mcs .. they had no clue what I was talking about. That is just off the cuff I did not give them a wk to research it but if it were an emergency the same would happen I expect. I was just checking as it was at the time the only hosp that comes up in a google search on mcs hosp in ontario.
It feels like walking out on a tight rope and hoping for the best when all other people have sidewalks bit unnerving to say the least… yet in my gut I have known it for a long time any treatment is a toss up … could make me better could make me worse… could end me. Started way back for me with a bad reaction to birth control pills causing a small stroke… all the warning sign were presented to my doc who did not respond appropriately in my opinion… bet he listened and acted when the next teenager came in with the same side effects I hope he did anyway maybe he didn’t.
Yea, we have to plan months in advance and work full time for weeks with a large number of so-called health care professionals to make sure they don’t harm or kill us in case we have an emergency
What about MCS and domestic abuse?
What about MCS as victims of clinical narcissist?
What about MCS and homeless, not “I chose to live in a tent in my backyard because my house makes me sick from wood finish”, not “After long hours of research i bought a car to live in,” but avtual, regular, homelessness in which a regular homeless human being, who makes $100 per year or lese, develops MCS while being homelees (and perhaps is perfectly capable to live in any house alone, or even many apartments since apartments do not share heating/AC units… but they cant live in any of these because of the fact that they are homeless, not because they have MCS)?
What about it is impossible to wear any mask because of MCS, so now in addition to the massive amount of prior illegal discrimination due to air freshener, we are now literally illegally banned from every building in the country except dwelling, via the manager or owner saying “You are not allowed inside this building and I will violently assault you if you enter the building”?
What about MCS and jail?
What about serious, permanant property damages via hazardous chemical weapons, and the required jailtime for the criminal who has done this to your property, including the required damages for monthly rent to the property for the rest of your life since it can no longer be rented to someone with MCS which is the only way to prevent additional serious medical damage to yourself?
What about MCS and a plethora of other conditions and refusal to provide nontoxic food at food pantries or demands to slather your body in toxic chemicals otherwise you are not allowed to eat food by being given any food and you are not allowed to speak to human beings at any agency?
What about electrical sensitivity and constant discriminatory demands to “call us” or “you are not allowed to comment on this proposed public policy unless you own a smartphone and download this surveillience, close-source application which is a virus”?
What about MCS and illegal theft of your protective devices by police?
What about MCS and receipts?
The barriers are indeed systemic.