I know, it's been awhile..but still learning to adapt to a different world.
I have not stopped the "fight" for change within the BC Cancer care, but I will say, my head is very sore from banging it against the walls surrounding the system. If it was a matter of even baby steps forwards, one would feel some sense of accomplishment, but this is definitely not the way things work.
The problem with this extremely important Government program is, it is government!! The tiers are immense, to get from the bottom to the next level is like tryng to rescue the princess in a game of Mario bros. when you suck at games. The hurdles are unending, and clearly put into place to cause one to simply give up. Management is definitely top heavy in this nightmare, they have rigged things so that you wait and wait again, to learn of yet another procedure you must follow, no different than actually struggling with the medical side of things.
To accomplish the most simple thing, requires far too many steps, that are decided by a whole team of management folks, who surround the system with a dome of steel to protect it from any questions at all. That folks, is where much of their budget goes, not to the care of citizens, but to cover the butt of those who have screwed up! When you are told things, in regards to requests, that the Legal Risk Management team has advised they are NOT to provide , average folks like myself wonder exactly what they are hiding.
In all of these months, we have got one "meeting" with Cancer Care, this meeting was cancelled without notice , and changed to a "healing ceremony" in which terms such as "you", were NOT allowed, so absolutely NO answers. Now, keep in mind, because this "fight" was a promise made to Chuck , we have absolutely NO plan to give up. His wish was to make the care for those who end up going through the Cancer care system, clear of the massive cracks he fell through. They are horrible cracks that are ignored by everyone involved, from Cancer Drs. to Oncologists. These cracks actually kill patients, but no one is held responsible.
Are you aware that no one actually reads a patient's file? Well, maybe there is one person, in the very beginning, but from then on, all the history a patient must give is simply buried in behind everything else, and afterwards it is usually just the most recent procedure, test, whatever, that is actually read. I learned this very early in Chuck's experience, and this is the most important thing that we want changed. This was the first and, sadly the biggest crack we discovered. Reading his file could have made all the difference in the world to his care! Is it because we now live in the world of computers that has allowed folks to ignore so much? To have someone in charge of your survival simply click on a screen to the most recent page and perhaps the second page, and assume they know it all, is this due care? To miss the fact that a patient had a massive brain bleed in the past, because you didn't have the time to read their file, acceptable? To be ignorant of a previous broken back, and assume the old fracture is cancer because it shows the same, is that alright? All of this is on file, because a nurse sits and takes a history..then it is covered up with everything else, keeping the past secret because the professionals cannot stoop to read past the page.
I have had a professional admit she did not read his file because she did not (I am unsure today of the word she used as an excuse but believe it was something like "initiate" ) him. Basically she did not put him into the system, so she had no need to read his file! Would this make you feel comfortable? The reason this was admitted to me is because, I questioned why he had not had a CTscan since his inital diagnosis in September. She missed this lack of CTscan , his Oncologist missed this lack of CTscan and whoever else was on his medical team, missed it as well! No one was even glancing at the file! So how can they do their jobs properly if they don't even have a clue of his history back to the beginning of being under their care?
I will share the other requests of reform we have at a later time, and reasons these reforms are desperately needed in this absolutely disaster of a system, however, today, I need to pull out all my notes and blogs and relive this journey once again. We have a zoom meeting with a Provincial Cancer Care Dr. on the 16th who is suppose to go through his file from start to finish with us , and explain things, I think...Because one is never sure exactly what it is they are offering, and I know that Legal risk management stated we cannot get a second opinion on the way things were done, so I just need to be ready with our facts, because I am certain our facts and theirs are not compatiable. I really do not want to relive things again and again, but if that is the price to pay to get this killer system fixed so others do not lose loved ones long before their time, so be it!!
