Hospital Protocols for People With MCS/ES

hospital

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”.

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.

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HEAL of Southern Arizona’s MCS Accommodations Letter

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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)

 

Multiple Chemical Sensitivity: A guide for Victorian hospitals – Department of Health, Victoria, Australia

 

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

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 ).

Door sign with text that can be altered to suit individual needs

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

 

National Institute of Building Sciences IEQ Indoor Environmental Quality Project   DESIGNATED CLEANER AIR ROOMS

 

Practice Greenhealth

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

 

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9 responses to “Hospital Protocols for People With MCS/ES

  1. 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.

  2. 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…

  3. 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.”…

  4. 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/

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