Only Anecdotal

The last week in the consumer trenches has felt like an exercise in unknotting strands of random advice, help, and procedures, trying to figure out just what has happened, and what is going on now.

A disabled woman is left stranded as her doting husband reverses roles from caregiver to care-receiver. The woman is alone, though not completely helpless, but she misses him so much–and vice versa–that life stops for each one of them when they are apart. In her house, I can only imagine all that he has actually been doing for such a long time, but finding trustworthy help in the home has been a more stressful process than going without it.

Another woman is telling me bits and pieces of difficulty not related to the major surgery that has made the bits and pieces now incredibly relevant. As I listen to her, and she tells her story again, I begin to wonder why this surgery happened in the first place–it was preventative, and not expected to significantly lengthen or improve her life. Or if she really did need some sort of intervention, why this particular procedure? She tells me that a year ago she was mowing her own lawn, and now says that she would never have gone to the hospital that fateful day if she had known. She was told at the time that there was no choice, and no time to wait. But there always is a choice; an informed one would have been fair to her.

Another person is trying to negotiate a balance between mental health systems and substance abuse systems, with very little success. One disregards the other–a familiar story. Insurance is denied for the things that might help the most, and I am left wondering how on earth a fairly young person–post-IDEA–could have made it through the school system without anyone doing something. And yet, he was passing his classes; he was not violently disruptive. It happens all the time.

In all of these situations, the people involved–consumer, client, patient–were all very well aware of how they felt, and what they believed they needed and wanted. In none of these situations were they able to get it, and to be honest, none was doing very well.

Many people have told me that getting older is difficult because so many people you love die, because your body refuses at times to cooperate, because the rest of the world stops listening. I am fairly sure this is all true, but I think it is true of many people who find themselves in the vulnerable situation of illness, disability, or actually, any sort of vulnerability. We will all find ourselves in these situations at some point of our lives.

I have found myself more and more frustrated at the level of advocacy we expect people to exercise when they are in these vulnerable situations–an entire education on Healthcare 101, or Social Services 101… no, make that 501. It is not enough to understand the mere basics. But for what? I find people everyday who have services, but no sense of why they come or who sends them–and the worst situation: what happened, when things fall apart. I have spent hours during the last week on the phone with various pieces of puzzles in people’s lives–trying to get some sort of response, but often to no avail. It is not even enough to be vigilant, sometimes. But without that vigilance, most people end up in far worse predicaments. What a shame that we cannot be clear and try to do our best to make sure people are heard and get what they need, what they are paying for.

In the end, assumptions and best practices may result in confusion, accidents, overdoses, high anxiety, death. Tragedy, preventable if for want of better customer service, and more honest, unbiased, balanced communication.