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Archive for May, 2011

Need to No – Giving Too Much

One of my favorite things about patient advocates and navigators is that they are very generous, kind and giving people. They figure out what needs to be done, and they step up to the plate to do it.

But one of my frustrations with patient advocates is that some are too generous, too kind, too giving.  Too many have never learned where to draw limits, how to assess when they’ve taken on too much, or are in danger of taking on too much. They just don’t know how or when they “need to (say) no.”

Conversations with two AdvoConnection members remind me of this.  And it’s worth sharing with you because it may give you the kick in the backside needed to learn to say no when you know you should.  Sometime before you begin dropping all those balls you’re juggling.

One case is an advocate who I will call Molly.  (We have no members named Molly, so don’t try to figure out who I’m talking about!)  She lamented the fact that she just didn’t have enough work, and was worried about keeping her business afloat – yet – she told me how busy she was with clients. I finally figured out that all those clients were people she was helping for free.  They needed help, they could not afford to pay her, so she just began helping them anyway.

How very generous!  Remarkably generous, really.  And I applaud her for that – except – in effect, she was volunteering her way right out of business.  All her time was being spent helping those folks for free, instead of doing marketing, making phone calls, drumming up some speaking opportunities – tasks that could help bring in paying business.

Not to mention the level of stress  (and loss of sleep) when we are not only overworked, but worried that business isn’t going well.

“But,” you say. “Those people need help too!”  And I agree.  But there needs to be a point where you realize that if you spend your time working for free, and don’t stick to building your business, you will go out of business.  At that point, you can’t help anyone all.  No one. Not on a paid basis OR on a volunteer basis, because you will have to go out and get a job that will make up the difference. It’s not worth it.

The solution?

Read more…

Sad News and a Heavy Heart

May 20, 2011 1 comment

Ken Schueler, perhaps the godfather of patient advocacy, a mentor to many of us, and a dear friend of mine, passed away Thursday morning, May 19, at his mother’s home in Great Neck, NY.

Ken was diagnosed several weeks ago with pancreatic cancer.  He attempted chemo, but had a very difficult time with it. When I spoke with him last week, he was very weak, but upbeat and hopeful the chemo would help extend his life.

Ken was a man of incredible compassion and extensive knowledge.  My faith in his abilities grew even more so when he consulted with my father several months ago on some of Dad’s medical issues.  Losing Ken feels like losing a family member and will leave a hole in my heart for a very long time.

In the coming weeks, I will tell you more about how Ken will be honored through AdvoConnection.  There will be scholarships for memberships in his name to enable his legacy to live on in the work of others.

Please keep Ken and his family in your prayers.

(Update, May 21):  The family has requested donations to NAHAC in lieu of flowers.  More information.)

Categories: Uncategorized

Craving Inside Information – from the Outside

May 16, 2011 1 comment

I mentioned last week that a dear friend has been diagnosed with a terminal disease.  I’ve known this for several weeks now, yet it still catches in my throat many times a day.  My work in patient empowerment and advocacy provides chafing reminders way too often that my friend is sick and that there is nothing – not.a.thing – I can do to help him.

Exacerbating my heartbreak is the fact that I am hundreds of miles away from where he lives, and I am a friend that doesn’t know his family.  That means that getting information is very difficult to do.

He was hospitalized about 10 days ago.  I do know that his family has rallied around him and I have been able to keep up… which is why I’m sharing this information with you.

His sister and daughter have been marvelous about posting almost daily to CaringBridge – a website that allows patients, families and friends to keep up with each other.  I’m able to go there are read about his progress.  I can add comments or send him messages.  It’s an opportunity for an exchange of information that if it didn’t exist, would leave friends like me entirely in the dark.

Caring Bridge is just one website that makes it easy for this type of information exchange about and for patients.  Care Pages is another one.  I actually wrote some Do’s and Don’t’s for using patient websites about 1-1/2 years ago (everything from understanding that they aren’t HIPAA compliant to being sure to wash your hands afterward if you are the person posting about the patient from a public, hospital computer.)

But until this experience, I didn’t understand just how important this ability was. I now understand the frustration of being on the outside, craving inside information.  “Important” isn’t even a strong enough word.  Vital, maybe.

So why am I sharing all this with you?

Read more…

It’s the Universe Calling: Time for Plan B

A few months ago, I was invited to speak in June during a one-day program for members of the Pennsylvania Bar Association on the topic of recovering from a catastrophe.  Attorneys who attend will learn about the things they need to do should something devastating happen in their lives (an accident, caregiving for a loved one, a fire, whatever….)

About ten days ago, I heard from a dear dear friend that he has been diagnosed with a terminal disease. Prognosis, just a few months. I am devastated – my heart just aches for him, his family, and yes, for myself, too.  And I wonder…. he is a small business owner…. what will become of his business and his clients?

Then this weekend, I was approached to review a new book, written by a doctor who, as a result of a devastating car accident in 2005, became a patient himself and dissected all that was wrong with his care.  Included in his story is the fact that he has given up his thriving practice of gastroenterology, a practice which had to take a back seat as he recovered from his injuries.

Which is when (yes, I’m slow….) I realized that the universe was telling me something.  Or at least posing this question:  As advocates, as people who others rely on, how prepared are WE for devastation in our lives and, importantly, how that will affect THEM?

How many of us have a Plan B?

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What Health Advocates Can Learn from 9/11

With the demise of Osama bin Laden, I’m reminded of experiences I can share with patient and health advocates and navigators that will help us do our jobs better.

Many readers of this blog know that the reason I do the work I do is because I was diagnosed with a rare, terminal lymphoma in 2004.  Being told I had a terminal disease was heart-stopping and terrifying. Even today there are certain triggers that drum up all that emotion. Post traumatic stress rears its ugly head….

Of course – I don’t wish that for anyone who ever reads this blog!  However…

I believe that to truly understand how horrifying such a diagnosis is, you have to live it.  But if you have never lived it, I can give you a metaphor. If you will give this some thought and embrace it, you will become a better advocate, because you will better understand how your client feels.

Close your eyes, and think back to 9/11 – and 9/12, 9/13, and those subsequent weeks and months….  Think back to the moment you watched those planes fly into the World Trade Center on TV, heard the news, saw the photos, spoke to a loved one, cried.  Embrace the fear you felt.  Remember that horrible feeling that we in America had lost our innocence, but even worse, any sense of security we had felt our entire lives to that point. We became afraid of doing ordinary things – being in crowds, flying in planes – our everyday lives were disrupted in ways we never could have imagined.  And – we knew we could never go back to the innocence of 9/10.  We had to learn to deal with it.

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