In Emily's memory, I petition the Health Minister of Canada to provide a unit dedicated to the care of those with ME that need hospitalization in Toronto, Canada's largest city. Please join me by copying and pasting this letter (or parts thereof) and sending it to the addressee below, as well as politicians in your own area of residency to create healthy institutional care for people with ME/CFS.
Mayor of Toronto (Rob Ford)Minister of Health - Canada (Hon. Leona Aglukkaq, MP) Premier of Ontario (Hon. Dalton McGuinty, MPP) MP for Toronto - Danforth (Hon. Craig Scott, MP) MPP for Toronto - Danforth (Hon. Peter Tabuns, MPP) Minister of Health and Long-Term care - Ontario (Hon. Deb Matthews, MPP) MPP for Don Valley West (Hon. Kathleen Wynne, MPP)
The Honourable Leona Aglukkaq, P.C., M.P. Health Canada Brooke Claxton Building, Tunney's Pasture Postal Locator: 0906C Ottawa, Ontario K1A 0K9
Dear Honorable Aglukkaq, Hon. Dalton McGuinty, Hon. Craig Scott, Hon. Peter Tabuns, Hon. Deb Matthews, Hon. Kathleen Wynne and Rob Ford:
I am writing to you about a severe lapse in care for the large population of Ontarians suffering from Myalgic Encephalomyelitis and ask that you take steps to ensure the health and proper care of these individuals.
This letter is prompted by the recent death of 30-year old Emily Collingridge who died in hospital in the UK with severe ME/CFS. Ms Collingridge severely relapsed from her previous hospital admission and never recovered. General hospital practices led to her death and to the deaths of Lois Owens, 27; Lynn Gilderdale, 32; Sophia Mirza, 32, and countless others with this illness, either directly or indirectly. It is time that at least one hospital in Toronto have a unit for the dedicated care of ME/CFS patients and their special needs so that this does not happen here.
Here is a quote from Indigo Jo blogger Matthew Smith to give an idea about the unique issues people with ME face regarding hospitalisation:
Emily suffered a severe relapse after the book was published, prompted by an unavoidable hospital admission, and correspondence from her family has said that she had endured very extreme pain and other symptoms since, although they decline to go into some of the details. However, one depressing aspect of her recent experience is that she has refused to be readmitted to hospital because, on previous occasions, “the hospital weren’t able/willing to meet her need for a quiet and dark care environment which had a devastating impact on her body”.
Severe ME (and sometimes, less severe ME) often heightens the senses of the sufferer, so that any touch can be experienced as pain and much (or sometimes any) noise and light can also be very painful. Emily Collingridge noted that, during a previous admission during a previous crisis, she could hear the doctor whispering to her parents that her heart might give up, and he did not believe she could hear them. Hospital wards, as anyone who has ever visited an inpatient in one, let alone had to be in one, will know, are not particularly restful places, even at night, something I remember from visiting my sister in one a few years ago; she had not been able to sleep properly because of the constant noise and activity on the ward at night. What this must be like for a patient who really needs quiet and other stimulation reduced or eliminated does not bear thinking about.
It really begs the question of why London, [or Toronto, Canada] a wealthy city of some 7 million people, cannot provide a facility like this: a suite in a hospital where staff are trained to deal with patients with sensitivities to noise, light and chemicals; such patients include ME sufferers but also those with Multiple Chemical Sensitivities (MCS) and, perhaps, autism (obviously, in conjunction with whatever else they are in for), and where they receive minimal disturbance, an environment suitable for their sensory needs, and where they are not exposed to harsh-smelling chemicals such as certain cleaning agents. Needless to say, they need to be staffed by people who understand (and accept) these conditions and are sensitive to the patients’ needs. I’ve never had experience of running charity appeals, but there needs to be an appeal to raise funds for such a unit so that patients like Emily can feel safe in an institution which is there to heal their sickness (or ease its symptoms and complications, if they can’t deal with the illness itself) rather than make their suffering even worse. I have been hospitalised and/or been in LTC care facilities in Ontario for over two years in my thirties. I had to leave the hospital via ambulance without being discharged to avoid imminent death. Hospital and LTC experiences almost killed me and led to severe relapses that I have yet to recover from: becoming paralysed again, unable to sit up, walk, or stand are the very severe consequences I suffered from my time in the institutions of Ontario’s Health Care System. At this point, I would chose the possibility of death instead of going through the tortures of hospitalisation again, and that shows there is something very wrong with the current system.Indeed, this problem regarding institutionalized healthcare and ME/CFS patients is a global concern as evidenced from my petition. However, my torturous experiences with hospital and LTC occurred in Toronto, the city where I reside; thus I'm asking for change to start here.
People with ME are extremely sensitive and must be cared for with these sensitivities in mind or they will relapse. Cleansers that they can tolerate must be used for room-cleaning, like industrial strength colloidal silver that is used at the Hospital for Sick Children. Staff in the unit where ME patients reside must use scent-free products, as is the practice in all establishments in the entire province of Nova Scotia. The unit needs to be quiet: no pianos, televisions, radios, clowns jingling bells, strangers bursting in to play the violin, etc., as some patients are so sound-sensitive, they cannot tolerate even the sound of others breathing. Visitors must be quiet and their numbers must be limited (upon my admission to the Scarborough Hospital, General Division there were nineteen people in my 4-bed ward, even though there was a generous 2-visitor per person policy with a very visible poster up). The lights must be totally out at 9PM so that proper sleep is ensured; lights in the hallway must be dimmed by 80% if the patient chooses to have their door open at night. Staff cannot yell and act boisterously on the floor, or play tricks on patients for their own amusement. Air purification units must be present for their ‘white noise’ and there ability to keep air clean; Aller-Air Air Medic is a great choice and is made in Montreal. The diet must be able to accommodate the many and varied sensitivities of people with ME, and as a default should start with being gluten-free, dairy-free, excitotoxin-free and free of artificial colours and preservatives. Some people with ME cannot tolerate being spoken to without relapsing; others cannot read or speak; this does not mean they are ‘out of it’ and automatically give up the right to direct their own care. They really need private rooms, and to have the option of signing a waiver to have the door closed at night and refuse hourly night-time checks and vitals measurements so that they can sleep. Ideally, PSWs would not be allowed to work on the unit, and specially trained RPNs and RNs should administer care.
Myself, I have been taken off the CCAC’s LTC care list for one of the homes I applied for - the Arthur Meighan Manor - as they said they could not care for my needs once I stated them. I have not informed the other LTC home of my needs in fear that they would do the same. LTC facilities for those with ME need to be much more than just ‘live body storage’ as is unfortunately the case. I have no home. I have applied for Assisted Living, though am not well enough to live on my own with attendant care (again, I will not tell CILT that, and hope I eventually improve), and am unsure as to when they can provide me a unit anyways. As you can see, I have fallen through the cracks to a place where I am worse off from Ontario’s Health Care services, faced with the very real problem of where to house my body so that it can actually heal; my elderly mother can’t do it indefinitely. I hope I have adequately argued the need for a small hospital unit/long-term respite centre for this extremely vulnerable population. Even a four to eight room unit would be a start, and would not cost that much; actually it would save provincial monies in the long run as healthier people are more productive people.
I am willing to collaborate with your team to the best of my abilities to create such a unit in Toronto. The Women’s College Hospital may be one option to house such a unit, as they already have an Environmental clinic with many of my suggestions already implemented.
Please let me know in writing when you will undertake this vital initiative. Also, please let me know what myself and others in this situation are to do in the meantime to ensure that the places that are supposed to help us don’t end up harming us.