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Trisha Torrey

Confused? Frustrated? Not Getting the Care or Answers You Need?

By February 4, 2013

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Now that's a loaded question, isn't it? I would venture a guess that most of us have been dissatisfied with the answers - or non-answers - we have received from our doctors or other providers sometime in recent memory.

But it's a loaded question on purpose - because the next guess I would venture is that you "ain't seen nothin' yet." If you think you aren't getting what you need today, then just wait until 2014 when 32 million Americans who don't have access to providers today, will have access.

This post isn't intended to go into a litany of the reasons you can't get the care you need. They've been covered previously: See Follow the Money

Instead, this post is intended to clarify how to improve the situation, with a few truisms to be aware of to start us off:

Reality Check #1: Our hurdles to getting the care we need will continue to create confusion for at least the next 10-12 years as the new Affordable Care Act begins to settle into its possibilities. Of course, that means it's on the backs of the baby boomers (why or why did we shelve this in the 1990s?) But it is what it is - and we have to deal with it.

Reality Check #2: No one teaches us to be smart patients. So we have to figure it out on our own, or find someone to help us. We've never been required to take responsibility for our care, so it's a major shift in mindset to take that responsibility. But, take it we must.

Reality Check #3: When you're sick, or hurt, especially when you are taking medication that has any effect on how you process decision-making, it's almost impossible to stick up for yourself to get what you need. The sicker you are, the more help you need, and the less able you are to command the answers you need - and deserve. Making the situation even more difficult is that you often have difficult decisions to make under these circumstances, and the doctors treating you don't / aren't / won't take the time to provide you with the decision-making help you need.

Reality Check #4: We can ask loved ones and friends to step in to help - a good start. But unless loved ones have a good background knowledge of how the healthcare system works, and a good relationship with the gatekeepers who can make things happen the way they should, then you still won't get all of what you need.

So - I promised you an answer, or at least a way to improve the situation. That is: find yourself a some help.

There is help of many flavors available to help you, and they come in many sizes no matter what your wallet looks like. Here are some examples:

  • If you need help choosing an insurance plan, you might get help from your state's SHIP program.
  • If you have recently been diagnosed with a terminal or long term condition or disease, there may be an advocacy organization that can provide tools and resources to help you weather the decisions you must make.
  • If you're having trouble affording your prescription drugs, there are several organizations that can help you reduce the cost of those drugs.
  • If you have lots of general questions about how the system works, or what possible solutions there might be to hurdles you have encountered, you might find the answers you need right here at the About.com patient empowerment site, or one of the other health-related About.com sites. Just do a search in the box at the top right of this page.

Finally, you should consider hiring a private patient advocate to provide exactly the services you need, when you need them. Before you just dismiss this idea because you think it would be too expensive - consider the benefits:

  • Consider the advocate who can help you reduce your hospital bill because he knows how to negotiate on your behalf.
  • Consider the advocate who knows how to be sure you have a safe and healing stay in the hospital, so you won't get a hospital infection, or suffer a surgical mistake.
  • Consider the advocate who will help you through a shared decision-making process so that you'll be more confident that your wishes are being attended to instead of getting tests and treatments you don't need and won't help you.

For those services and more, the cost would be far less than you might imagine. And of course, it doesn't cost you a dime to ask the question about cost either. You can always decide not to do business with the advocate who quotes you a price.

One of the keys to the success of any of this is to be aware of who can help you, in which ways they can help you, and about any potential conflicts of interest they may have. Assessing their allegiance will be a key into how trustworthy their help will be.

So there you go - options and resources. You may not need them today, but I guarantee that, unless you are hit by a truck or a major heart attack so that you have no time to worry about how you'll answer all those tough questions or make all those tough decisions - then you'll need these resources one day. Bookmark this page.

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Agree? Disagree?
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February 7, 2013 at 3:43 pm
(1) gemdiamondintherough says:

As usual Trish, you are right on the “money”! We have to realize that we have to be our own best advocates. Having said that, we also need to be as wise as possible and not burn our bridges behind us! Educate, educate, educate. Then make a concise list and with a care provider you trust make those decisions together, if possible. If not keep on going and see if there may be other answers, 2nd opinions and the like. Do the best you can with the resources you have available. And then remember that when a family member or friend gets sick, you may want to offer your assistance. I said OFFER, not force!!!! Because all of us need an advocate these days.

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