Monday, July 28, 2014

The Days and Weeks that Don't Count

My mom is facing a health challenge - she finds herself in that position that none of us really want to be in, living with a medical condition and going from "person" to "patient". It is non-life threatening, but she finds herself debilitated in a number of different ways. She wants to go back to normal, back to a level of health where she can enjoy her life, back to a level of health where she can go back to work. She wants to be able to retire in a few short years, she wants to be able to play with her grandchildren. She wants to resume an active lifestyle - and is finding navigating the system "a challenge". She has a diagnosis (and has had one since the beginning of June), she has already underwent an MRI (out-of-pocket) and will undergo another in August. She has been seen by a neurologist. And is waiting to be seen by a neurosurgeon. She does not know who she will see, or when. Once she does see a neurosurgeon, she will then know whether or not treatment will be recommended, and then, if treatment is recommended she'll have some idea of how long it will be until she can start on the road to recovery. In the meanwhile, she waits. Days and weeks, and months passing, life for her is being taken in a day-at-a-time chunks. But these days and weeks don't count, she is waiting but the "official" clock has not even started to tick. Because wait times in Canada are not measured from diagnosis to treatment, rather they are measured from the time the specialist (in this case the neurosurgeon who she does not yet even know the name of and does not yet even have an appointment date) makes the booking with the hospital to have the treatment done.

I cannot help but think of all the patients, who like my mom are waiting, about all the time that doesn't "officially" count. All the time spent living lives less than what might be possible after being treated.

I cannot help but worry about the human cost of waiting. The human cost of foregoing the fullest life possible. The human cost of having one medical problem snowball into other medical problems. The toll on relationships.

Surely, the system could work better for patients. At the very least it could provide better information so that those who are in the system have a better idea of how long their lives are likely to be put on hold. It could also better empower patients by providing information on not just the local care options, but also on the alternatives at least within the same province. Further, it could better measure and reflect the actual experience of patients to at least validate the time that currently "doesn't count", because it is time that most definitely does count to those who are waiting to access the care that they need.

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