Monday, March 13, 2017

What I have learned from the entire business in continuing care is that there is no sort of openness or transparency about problems especially adverse events. If this is the case, then there are no learnings and simply regulations in place. The situation will not change because the system is defensive not transformative. I can't do much about the bureaucrats in charge of the system but I can write about my family's experiences so that other families will be able to learn from our experiences. Personally, I feel this is all families can do about the poor state of continuing care in Alberta and probably all over Canada. We are not partners in health care. We do not have patient centred care. We have no voice at the table of health care or continuing care. We are disregarded when we advocate for our family members. We are treated simply like intruders on the medical scene. Who are we to speak for our own? It is very sad. But there you go. The system will not change until more families go through what we have gone through and understand that poor staff:resident ratios, lack of required education for the care requirements of residents; lack of interest by AHS ,Covenant Health and Alberta Health bureaucrats/executive staff--all these factors keep the system stagnant and politics is the main game being played rather than patient care. Well if politics is the main game being played, I guess patients and their families have to learn to play this game. How about we vote out the folks who do not help families in the continuing care system? How about we ask for the change that never comes in the treatment of patients and families? How about we come uninvited to the table of power and say --"Here we are--Patients, Families and Advocates and we want to be heard?" What would happen then? I'm thinking the partners--Alberta Health, AHS, Covenant Health and the continuing care industry would have to hear us. We pay for everything. Now hear us. Hear us because like Ruth Adria, we are not going to be silenced.

It is morning. Younger boy staggered off to NAIT.
Ten million pieces of paper are like me like snow.
Since this lawsuit covers five years you can imagine the data.
I have a cup of coffee to guide my neurons to awake.
After I ski through the snow of paper, I will go to Rebecca. I will get her on the BIPAP for the afternoon. I don't know what is being done about her stomach bug -maybe the bug just is endured.
In any case, I will nap on the chair next to her while she is being revived by the BIPAP. After many episodes of carbon dioxide narcosis I have learned that you simply have to hope the BIPAP machine is able to force the carbon dioxide out of her body doing the work of her lungs for the most part.
The last two years since Rebecca has been evicted from both the Good Samaritan Extended Care at Millwoods and then from the Grey Nuns Hospital using the Hospital Act has been a stunning revelation to me of the vulnerability of residents in the continuing care system.
I don't know what to say about this business of what the GOA calls "transitions" . I may have to think about it all.
In any case, moving from place to place because Alberta Health hasn't got the interest to create public continuing care sites where complex care patients can be housed safely for the duration of their existence (sort of like the Michener Centre_--well it's dumb. It is clear to me that residency is precarious for complex care patients at any private continuing care facility and sooner or later there will be a need for a place in the public sector because the private developers in charge of continuing care don't want the expensive care patients --they are business folks after all and have to make a profit.
What this means is that there needs to be places where complex care patients can be housed safely without destabilization of the sort my sister has gone through.
Ordinary citizens are able to manage transitions but complex care patients find this tough.
As well I have noted that whenever there is a transition there have been changes to the transfer orders and some of these changes add to the difficulties. One central respiratory figure needs to be in place to affirm the need to maintain oxygen saturations at specific levels at every transition. I note that this has not been the case in my sister's case and having an oxygen rate of 4L might be appropriate when she has pneumonia but isn't so appropriate day to day when she has it for BIPAP use at night and is accumulating carbon dioxide to a state of narcosis.
For folks with respiratory failure there are problems and add to this other health conditions and you are always having to be alert to problems. This is why I don't think that my sister should have been downgraded to SL4 status but you know how government and public bodies are--they will shoehorn you into the tiny Cinderella shoe even if your foot is too big.
What I have learned from the entire business in continuing care is that there is no sort of openness or transparency about problems especially adverse events. If this is the case, then there are no learnings and simply regulations in place.
The situation will not change because the system is defensive not transformative. I can't do much about the bureaucrats in charge of the system but I can write about my family's experiences so that other families will be able to learn from our experiences.
Personally, I feel this is all families can do about the poor state of continuing care in Alberta and probably all over Canada. We are not partners in health care. We do not have patient centred care. We have no voice at the table of health care or continuing care. We are disregarded when we advocate for our family members. We are treated simply like intruders on the medical scene. Who are we to speak for our own?
It is very sad. But there you go. The system will not change until more families go through what we have gone through and understand that poor staff:resident ratios, lack of required education for the care requirements of residents; lack of interest by AHS ,Covenant Health and Alberta Health bureaucrats/executive staff--all these factors keep the system stagnant and politics is the main game being played rather than patient care.
Well if politics is the main game being played, I guess patients and their families have to learn to play this game. How about we vote out the folks who do not help families in the continuing care system? How about we ask for the change that never comes in the treatment of patients and families? How about we come uninvited to the table of power and say --"Here we are--Patients, Families and Advocates and we want to be heard?" What would happen then?
I'm thinking the partners--Alberta Health, AHS, Covenant Health and the continuing care industry would have to hear us. We pay for everything. Now hear us. Hear us because like Ruth Adria, we are not going to be silenced.

LikeShow more reactions
Comment

No comments:

Post a Comment