When I say that I'm a patient advocate, I hear....silence and I see confused faces.
What is that????
Others say, Ahh you translate for folks that don't speak spanish.
The reality is much more complex than that.
This are the words of a very good friend Trisha Torrey founder of AdvoConnection in the US about this "Fifty years ago, if you wanted to buy a house, you found someone willing to sell, and the two of you worked out all the details. If you needed a mortgage, you got it. If you needed a lawyer to draw up the deed, then you hired one.
But over the years, particularly as credit problems started to arise and the legal requirements got tougher, we began to see real estate brokers establish an expertise as the go-between – between the seller and the buyer. These brokers have a much larger bank of knowledge than someone who only buys or sells a home two or three times in a lifetime. They understand the process, know home values, mortgage options, negotiation – they know far more about everything related to the transaction of buying or selling a home than most of us do. Today, very few home transactions take place without a real estate broker to orchestrate them.
Unfortunately, the healthcare system (no matter what country you live in) has become so tenuous that patients really do need a go-between to help them navigate. Doctors can't do it alone anymore, nor can nurses. Without that expert to step in and shepherd us, we patients may succumb not to our disease or condition, but to the problems in the system that is intended to help us."
In order to help people cope with the system I am introducing the the concept of empowered patient, this consists of 3 characteristics:
Knowing the bureaucracy: in andalucía this means the SAS web page, or salud responde for more specific queries Now, we know it's more complex than that. That many everyday things (pathways*) are not regulated, so the personnel generates their own pathway.... usually with their convenience at heart, not the patients. With an advocate you have somebody that has worked inside the systems, and know all of it's tricks: this is not a small thing, this is priceless!
*pathways are roads that patients with the same condition should follow, usually they are done between the chiefs of the services involved but if it is not done, people invent one, it can be good or bad
An example: a friend of mine broke her ankle, in the costa del sol they fitted the cast and told her that she should go to the CARE mijas to have it removed, but that she would have to go first to ask for an appointment and then to get it off. My friend of course, couldn't walk and she lives far away from the CARE. She hired a taxi and she did all of that..fuming. A patient advocate could have first spoken to the nurse and explain the situation to see if : they could call themselves or if they can remove it themselves in the costa del sol, much more nearer to the patient's home. If this didn't work, she could have threatened with a letter of complaint, if this also didn't work, she would have written the letter. and all of this time the difficult person is the advocate, not the patient.
knowing medicine-becoming an expert in YOU. this means that you have to research your conditions, you have to know how does your body works, it's the difference between the student that read the lesson beforehand an the other that just stumbled into the room! there is a big difference between the two!.
The problem is that the web is full-too full- of medical information, and lots of them are just plain wrong mumbo-yumbo trying to pass off as medicine.
How do you recognize the two?, this is where a patient advocate is invaluable. Not only to tell you where to read, but as you know when one is sick the last thing y one wants to do is learn about the complications of the condition!. So the advocate can do the research herself, summarize and explain it to do, in a way , educate you in your condition with the best information.This will be done in a easy language so there is a demystification of medical jargon.
Became a marketing expert, and now you should be screaming WHAT!!!!!!, here's the thing: a) the doctor's time is very scarce, so you have to convey your message in a compelling and succinct way and b) there are cuts being done left and right, so you'll need to convince the Dr that you are the one that absolutely needs those resources!.
to do that you have to prepare for the consultation as for an exam (yes....)
So, in this step you have received all of the information from your advocate, and you know how to relay it to the doctor.
Sometimes, even with all of the preparations, the doctor refuses to "grant" you your goal, for example you wanted a referral to endocrinology, and he refused. Here the patient advocate can be assertive for you, because it has been widely studied that when we are sick we are disempowered. Also, you don't want to get the label of the "difficult patient!!", so it's great to have somebody else.
A word of caution: patient advocates are not miracle workers we will do that we can to help you, but we do not succeed 100% if the time. This has to be very clear, no strategy is failsafe and sometimes we just cannot get what we need. in that moment, talk to your advocate (in civil terms) what are your other options...