Monday, April 24, 2017

Preparing for the Yearly Conference Meeting

I looked out and it is snowing. Today is the day before the yearly conference meeting.
For all residents in the continuing care system in Alberta they are supposed to get a yearly conference meeting where the resident, family, advocates meet with the folks in charge of the care plan. In our case, we not only get the Villa Marguerite care manager present but also AHS staff from the supportive living section. I guess this is because I am quite open about the care of my sister and AHS likes to have their foot in the door of our private business.
Sometimes we have other staff present. The doctor won't be there. The other staff like a pharmacist might be there. I don't know.
In any case, I will go over the questions I have. I want Rebecca to get an hourly check at night rather than every two hours. Its just to make sure she is not without a mask on her face for two hours and she's not desaturating.
I have other questions that I will ask. I tape the sessions but the Villa staff don't want the tape on when they are yapping so I mostly tape AHS staff chatter.
It's best to tape any sort of meeting with AHS since I have learned of the backroom dealings the AHS folks engage in from the medical records I have read. There was that attempt to take over Rebecca's care --not to advocate for her but to dump her out of the Grey Nuns Hospital. The very idea of AHS staff that we PAY for doing this sort of Machiavellian tactics just to push through their bureaucratically expedient decisions ---makes me realize how naive families are in their understanding of the health care and continuing care system. We're simply not equipped to deal with the system.
The only way to find out about this sort of junk and also the Do Not Resuscitate junk is to read the medical files. The professionals have all this information and we only are privy to what they want us to know about. When we look at the medical files we get the full picture which might indicate to us the real problems the handicapped citizen is experiencing which might be that she can't be compliant if there are drugs that aren't being kept at therapeutic levels or that there is no compliance program anywhere in evidence or that frankly the government of Alberta has not been doing it's job of oversight of the continuing care system. What we have is a poor system of accountability and no transparency that is propped up by the government of Alberta which is ultimately responsible for the problems faced by families. The dumb response of the GOA to create powerless advocate offices is yet more ineffective performance that simply makes a bad situation worse.
As for Rebecca's case, there are two sisters. Sue and I go with our tape recorder and record the yapping of AHS staff. We ask for modifications of the care plan. When we don't get these modifications we ask why. Most of all we emphasize that Rebecca is R1-full resuscitation. My sister is handicapped but she is not terminal or palliative care. The folks in the system might write her off but the family has not.
Sometimes you have to be an ox for your sister. And sometimes you have to be as sweet as pecan pie. You just don't have to be naive about the system as we once were at the beginning of this journey.

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