Here’s an example of a different patient in exactly the same situation as me, who got the Ontario Ombudsman to override the EAP’s insistence that he get off steroids, against the medical advice of his doctor! Good for him, but it really pisses me off that this was the route that this individual had to take.
The nature of patient confidentiality makes it hard for patients to get together to prove that stupidities like this are taking place on a large scale. If we can’t collect the stats, the EAP (and the Ombudsman’s office) can continue to pretend that incidences of the EAP overriding fact-based medical advice are one-off issues to be dealt with on a case-by-case basis.
I will have to contact the Ombudsman again with the dossier I compiled of how the EAP treated me, as well as some information I was able to glean from public sources and conversations with my GI and Remicade coordinator about how many other patients are likely in similar situations. I collected a lot of data in 2010, when I was dealing with the second EAP funding refusal in 3 years, but ran out of energy to pursue it after I got my funding and the Ombudsman’s representative brushed me off. (Specifically, she told me that the Ombudsman’s office could not help with an investigation of what I told her was a systemic issue because I had already solved my own immediate funding problem (with the help of my GI, Remicade coordinator, and MPP!))
I was so angry after this that even looking at my file took more emotional energy than I had to spare. I put it all aside. . . until now. . .