Our Clients Need This ONE Skill the Most

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Twenty years ago, prior to self-employment and work in patient empowerment and advocacy, I was the marketing director for my local community college.

In so many ways I loved that job. It was different every day and allowed me to meet and get to know people I never would have known in any other way. It required me to get out into the college community to meet faculty, other administrative departments, and students. It required me to have good relations with the press, and because it was during a recession, it required me to be creative and clever to bring in new students. Community colleges attracted so many non-traditional students — those who were older, or had been laid-off, or wanted to change careers; they had such interesting backgrounds and dreams. And the biggest challenge – the advent of using the internet for marketing. Can you imagine? Attracting students by using the cool new surfing tool – the World Wide Web!

As I said… I just loved that job.

But, unfortunately, yes, there was a downside, too.

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Preventing Our Own Brexit, Saving Our Clients and Advocacy Practices

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The whole world was fascinated last month by Brexit: the vote in Britain to leave the European Union. Would they leave? Wouldn’t they?

But to me, the most fascinating part was what happened the next day. Once the vote had taken place and the (bare) majority had voted to leave the EU, those who had voted to leave began to learn the real truth of what they had chosen, and realized they had been duped.

Yes, duped. Because the leaders on the “leave” side immediately disclaimed the promises they made. Ooops! they said!  No, we can’t really apply the billions of dollars we send each year to the EU to healthcare. We didn’t really mean that!  We lied to you because we wanted you to vote our way!

How could those politicians make all those promises they never intended to keep?  How did the majority of a citizenry fall for it? Why, now, do many of those citizens who voted to leave the EU wish they could take back their votes, because they have changed their minds?

Brits can blame themselves – period – for not being smarter about reality. They voted for something that wasn’t true or possible because they believed and shared what they heard and read, never vetting possibilities or veracity.  They Facebook-liked, and shared, and re-tweeted, and Instagramed, and discussed in pubs, all that misinformation, disinformation, political venom, disdain and hostility – never fact-checking, never discerning the truth.

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They simply passed on messages that supported their own wishes or philosophies – even when they were lies.

… Exactly like we Americans are doing today with our presidential election and its issues.

It had quite the ripple effect. Because they shared all those lies and vitriol, the world became a more dangerous and unstable place. (Just what happened to your 401K the week after Brexit?  My point is made.)

So what does this have to do with health and patient advocates?

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Survey Says! The Results Are In

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We privately paid, independent, professional patient advocates “tend to be older, white, female, more highly educated, and have other medical training or past careers in related professions.”

…. or at least that is one conclusion drawn by the surveyors — those who built, issued and analyzed the first National Health and Patient Advocate Survey.*

Both private, self-employed advocates, and employed advocates (hospitals, insurers, employers), were surveyed. Whether or not you were one of the folks who took the survey, if you have any interest in patient or health advocacy as a profession, you’ll be interested in the results.  They were issued June 30 – you can download the report from here.

But that’s not the best news from the results… The best news is…

(drumroll please!)

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Would You Draw a Line?

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Early in my patient empowerment work, I was invited to write a column for my local daily newspaper. Over the next six years, I wrote hundreds of columns on every empowerment topic imaginable from how to get copies of your own medical records, to how to research a drug your doctor prescribed for you, to the (what we called at the time) “healthcare reform”. My column ended in 2011, but much of that work still stands today, some as useful today as it was then.*

As a result of those columns, I became a resource person for many locals who were struggling with some part of their healthcare. Many were scared or angry with the parts of the system that didn’t work for them. Some were just desperate to find a solution for an incurable disease or life-altering damage from an accident.

One such gentleman was Glenn, a man who had developed a glioma, a tumor that had grown tentacles throughout his brain. He was a well-educated man, an architect by trade, and was frustrated by what he saw as the continual roadblocks to his care. The glioma was inoperable. He had sought second and third opinions. His neurologist wanted to treat him with chemo, but Glenn refused chemo because he felt as if exposure to toxic chemicals might have been the cause of the glioma to begin with.

He first contacted me in 2006, and we stayed in touch, discussing many aspects of his care, until he died in 2012. Throughout those years he approached me with questions, and together we sought ideas and solutions, many of which subsequently ended up in one of my books and several of my newspaper columns. From his surprise when I wrote in one column about changing doctors, to the story I’m about to tell you about seeking help from a bogus cancer treatment center, I got to know Glenn quite well. He became a friend, and I learned so much from our interaction. I was not acting as his advocate by the definition we use today for professional patient advocates. We simply bounced ideas off each other.

While I respected his intelligence and the career he had built, I also learned from Glenn what desperation does to a patient. Which leads me to the topic of today’s post.

About two years into our friendship, Glenn’s glioma was growing, and he still refused chemo. He had left his job, and spent his days in search of something – anything – that would make the tumor disappear.

For example, he found a “doctor” online who promised him that if he bought her DVDs, and prayed many times a day, his tumors would dissipate. He spent hundreds of dollars on DVDs. He prayed and prayed. He was so convinced her approach would work, until, as you might guess, it didn’t.

He found several other possibilities of similar import over the next couple of years. He would ask my opinion, and was always disappointed when I didn’t react with his same enthusiasm. My assessment was usually based on cost – not just money, but the cost to his physical well-being and emotional investment, too.

Then one day he sent me a link to a clinic he had uncovered, convinced it offered him THE solution, because it offered him THE cure. Continue Reading →

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The YOMs Are Back! (And That’s Not a Good Thing)

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You may be aware that The Alliance of Professional Health Advocates maintains a list of mentors – people who have worked in private advocacy for long enough, and who have become successful enough, to be willing to, and able, to mentor advocate wannabes – those of you who want to become the best advocate you can be, but understand there are limitations to your knowledge that will get in the way of your success. Our listed mentors are professionals who are paid for their expertise, education, and advice by those who want to learn from them.

Hold that thought.

We all know there are people “out there” who think they are – or at least behave as if they are – entitled.  Entitled to anything at all – entitled to park in a handicap parking space (when they aren’t handicapped), entitled to move to the front of the line, entitled to help themselves to something they should be paying for, even, simply, entitled to interrupt or even bully others.

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