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.