Families Need You: A Thanksgiving Opportunity

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Families Need You: A Thanksgiving Opportunity

Thanksgiving and the rest of the holiday season are right around the corner. Smart health and patient advocates and care managers can find this season to be a golden opportunity to expand their reach in many positive ways. The holidays are family times. Generations come together. Inevitably someone is facing a health and/or health system challenge.  Aunt Joan has a new cancer diagnosis and hasn’t even considered a second opinion.  Dad needs help sorting out his meds, while daughter Francine questions about whether he’s taking the right drugs at the right times, or whether the prescriptions he’s taking are causing some new symptoms. Cousin Jack is drowning in medical debt; he has no idea know how to fight a denied claim, or choose the right health insurance plan.  Uncle Victor, age 78, doesn’t have a DNR or a will because he doesn’t understand their importance. These are the times family members begin to worry – and wonder who can help out. The answer is YOU – a friend, a neighbor, a fellow church or temple congregant.  YOU can help them. They probably just don’t know that. There are a few ways you can quite simply, and gently let them know that you are available should the need arise.  Here are some ideas for getting the word out: Begin by making a list of friends and acquaintances you have phone numbers or email addresses for. Don’t worry about whether you know they need you or not. Often families keep these sorts of challenges private. Now, put together some sentences that address each of the following: 1.  Appropriate greetings – as the holiday season arrives – Thanksgiving, New Years, plus whichever religious holidays their families celebrate. Ask how they are doing. Show empathy when you know its pertinent. 2.  An announcement that you have launched a private, independent advocacy practice. 3.  A brief reminder that sometimes families come together during the holidays, and may raise topics that are difficult or uncomfortable to discuss in relation to health matters, or hurdles that are caused by health problems… 4.  Offer a solution, that as…


 

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You May Be a Criminal Without Even Knowing It

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You May Be a Criminal Without Even Knowing It

You’re probably shaking your head… Criminal? Seriously? Of course you haven’t broken the law!  You’re a law-abiding citizen and would never consider doing such a thing! And yet, there may be hundreds of you who have done just that. Further, you would deny it – until you learn the facts. The facts, described here, may help you get back in line with the law if it’s required. I recently heard from one of our APHA members – we’ll call her Member A – who reported discovering that entire portions of her website, her intellectual property, had been stolen by another advocate, who we will call Advocate Z. Member A reached out to Advocate Z, explained that she had found the text from her website, word-for-word on Member Z’s website, and asked her to remove it. Advocate Z had plagiarized Member A’s website; copyright infringement by its very definition. It’s the theft of your intellectual property. It’s against federal law, and it carries huge fines and prison time. Even the FBI has something to say about it. Now – at this point you’re thinking… OK. What does this have to do with me? I didn’t steal any content from another website! My question to you:  are you sure?  Let’s begin here:  Who built your website? Advocate Z’s response to her own copyright infringement is typical: she dismissed the plagiarism by saying her web designer had supplied the copy on her website, so he was the one who had stolen it. Therefore it wasn’t really her problem. Not true!  For one thing, when YOU own a website, when it’s about YOU and YOUR business, then YOU are responsible for it. And if the content on your site was originally stolen, then YOU are considered the responsible party, not your web designer. That means that any copyright infringement that may appear on your site is YOUR crime. Unless it is part of commentary by someone else and is cited as commentary, then no matter who put it there – it’s your crime. It makes no difference whether you knew it existed or not…


 

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When Your Provider Says, “It’s All in Your Head”

This post has been shared by the AdvoConnection Blog. It was written with a patient-client audience in mind, but might be useful to you, too.

It is provided so you can find it in a search here at myAPHA.org, but you'll need to link to the original post to read it in its entirety.

Link to the original full length post.


When Your Provider Says, “It’s All in Your Head”

In a recent conversation with Annette, a young woman who has MS (multiple sclerosis), she described to me the first time she went for a drug infusion which had been prescribed by her neurologist. She arrived for the session using her walker, barely able to keep her balance. Exhausted, she was finally able to get comfortable in the infusion chair. As the nurse began setting up the needle and catheter injection system into her vein, she looked at Annette and asked her, “Are you sure this isn’t all just in your head?” Now, it’s entirely possible the nurse was trying to make a light-hearted joke. But the fact that, a year later, Annette told me the story, still distressed over those words, means that it doesn’t matter if the nurse was making an attempt at humor. She upset Annette at a very horrible and vulnerable time of her life. Those words “all in your head” have plagued patients for centuries. They are a discount; as if the provider doesn’t trust that there’s really something wrong with you. It most often stems from his/her inability to arrive at an accurate diagnosis. When he or she can’t figure it out, they turn it back on you, the patient, rather than admitting their failure. It’s dismissive, and it’s condescending. Further, it isn’t just an occasional dig. The “all in your head” verdict is heard far too frequently, especially by 50 million patients who are diagnosed each year with autoimmune and neurological diseases, or cardiac problems. The great majority of patients who are “blamed” in this fashion are (no surprise here) women. If you have heard those words “all in your head” – or any euphemism that might mean the same thing – then there are some things you should know, and some steps you can take to alleviate it. First, you know your body better than anyone else does!  If something seems “off” and you can’t shake it in a day or two, then by all means, get yourself checked, and do NOT accept any sort of verdict like “wait and see” or “it’s all in your head”. That will require a few things from you. For example, you need to be able to describe your symptoms accurately, see if you can determine any triggers for them, and keep track of dates and times. Those will all be clues your doctor can use.…


 

 

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ICOPA 2019 Proved, Once Again, That….

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ICOPA 2019 Proved, Once Again, That….

… there is nothing like a shared experience to improve our worlds: personal and professional. Just WOW! (L to R) Trisha Torrey, Anne Llewellyn, Teri Dreher, ICOPA 2019 Organizers The inaugural ICOPA is in the books and it was ALL THAT. ICOPA = International Conference on Patient Advocacy, held October 3 to 5, with just short of 200 attendees and great pizzazz! We were reminded of how our collective conscience, our passion, our dedication, and our skills and knowledge, collide with our disturbing healthcare environment, to create life improving, life extending experiences for our patient-clients. We were reminded of how working together – in collaboration with all flavors of advocates from private / independent, to hospital advocates, to non-profit (disease-related) organizations, to providers and others can reap benefits for patients who need the help, and the advocates who find their own loads lightened by working with other professionals. We learned about topics from Medicare (watch out for 2020!) to working with LGBTQ clients, to “a day in the life”, to including guardianship in one’s practice, to the future of advocate certification, and many more. We networked our feet off, mixing, mingling, and and meeting others who share our experiences, plus – importantly – wonderfully supportive sponsors – companies that support our missions, visions, and goals. We learned that, YES, in fact, the rising tide (and OHHHH yes! make no mistake – the advocacy tide is RISING!) does float all boats! We met new folks who want to become advocates. We met long-time advocates who shared their hard-earned and well-learned, invaluable knowledge. We met American advocates and Canadian advocates. We invited those with interest to step up to leadership. We learned there is plenty of room in our tent for many, many more passionate and skilled people who want to be advocates and care managers. And we showed the world that we, as a profession, are here to stay! If you attended this year’s ICOPA:  please share your thoughts below ! And if you didn’t…  well… we hope to see you in 2020!  Don’t miss it!  LEARN ABOUT APHA MEMBERSHIP | MASTER LIST…


 

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Political Controversy: We Are Being Tested Once Again

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Political Controversy: We Are Being Tested Once Again

I’m a political being and a news junkie. Can’t help it. It’s in my blood – literally – because both my father and grandfather (Dad’s father) were journalists, both avidly interested in politics. In fact, Grampa’s beat was Congress for Gannett Press in Washington, DC. (Reginald F. Torrey) See? I come by it naturally. Which is why the news of last week, the impeachment inquiry into Donald Trump’s actions, is painful to me. Now – do NOT get me wrong.  It’s not painful because I do, or do not, disagree with it! That’s not it at all. It’s painful because, as a business owner, I know it’s in my own best interest, and in the best interest of my business, to keep my opinions to myself. That is NOT easy for me! I meet many other advocates with political interest, too. I believe the reason is, that at our core, with very specific ideas about what is right vs what is wrong, leads us to intense interest, especially during these past few years. Thus, today’s topic and reminder. I’ve written about this before – the need for us as practice owners and business people to keep our politics to ourselves. Becoming publicly vocal about one’s beliefs on politically controversial issues can lead to a loss of business. I’ve taken heat for this recommendation, too! Readers have disagreed, saying it’s their duty to be vocal. And while I understand their reasoning, and I respect them and their opinions, I will continue to state emphatically KEEP POLITICAL CONTROVERSY OUT OF YOUR PRACTICE. I actually have a little more history on my side since the last time I went out on this keep-your-political-opinions-to-yourself limb. There have been a few examples of business people mixing their political beliefs with their businesses that prove my point about the business damage that can be done: Papa John – for whom the pizza company is named – took sides in the kneel-vs-don’t kneel politics of the NFL. He was ousted from his own company, and Papa Johns is still trying to regain market share. Many people who…


 

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Preventing a Deadly Outcome from a Visit to the Doctor

This post has been shared by the AdvoConnection Blog. It was written with a patient-client audience in mind, but might be useful to you, too.

It is provided so you can find it in a search here at myAPHA.org, but you'll need to link to the original post to read it in its entirety.

Link to the original full length post.


Preventing a Deadly Outcome from a Visit to the Doctor

Today I’m sharing an experience with you in hopes of preventing something we do but don’t think about; something which can be dangerous. At a recent doctor appointment, I found two people in the waiting room just hacking away, coughing up a storm, and very likely infecting others. They were together, and there for only a minute before the nurse took them back to the exam room, removing them from proximity to the rest of us who were waiting. I went to the reception window and asked for bleach wipes, but instead they sent someone out to wipe down the arms of the chairs those two folks had been sitting in, and the table and magazines in front of where they sat. But I guarantee – there were still bugs remaining in the waiting and reception area. I had to wonder – how many others might get sick from those germs? As I continued to wait for my appointment, I thought back to a similar, probably more deadly experience 10 years ago. Remember Swine Flu?  In 2009, the Swine Flu pandemic put the world under siege from a microscopic bug, naked to the eye – and yet, a killer. Almost 61 million Americans contracted it, and more than 12 thousand Americans died from it. Globally, hundreds of thousands of people died from Swine Flu. In the middle of the Swine Flu crisis, I had a check-up appointment. I arrived at the doctor’s office (not the same doctor – I have moved 1200 mile since then) to an overflowing waiting room, walked to the check-in window, and was asked to sign in. I looked down at the pen and paper I was expected to use, and instead dug my own pen out of my purse to sign my name. I could only imagine how sick I might also get if I used the office pen!  (I then looked around, saw how many sick people were there, told them I was leaving, and I would call to reschedule. I didn’t want to stay so exposed in that waiting room.) It’s possible I saved myself from getting sick, or even dying. I realize that may sound overly dramatic – but – who knows? I’m not even a germophobe, but I will certainly protect myself when circumstances and possibilities are so obvious. Fast forward, back to today… It seems like a simple thing, right? …


 

 

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Happy 10th Anniversary to AdvoConnection! Gifts for You, and a Challenge, Too

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Happy 10th Anniversary to AdvoConnection! Gifts for You, and a Challenge, Too

They have been the fastest, most exhausting, most rewarding, and most humbling years of my life… And they result in a story in which the universe has played quite a large role. On September 18, 2009 – ten years ago this week – the AdvoConnection Directory was launched. Just the directory. Here’s what it looked like: Nothing like today’s directory!  No, 10 years later, we’ve kept up with its growth, we’ve kept up with technology – AND we’ve kept up with MEMBERS. It might surprise you to learn that having members wasn’t even in the cards when we first launched. The original intent was simply to provide a means for patients to find help. They could search and find one of the 30 – yes! only 30! – advocates who had listed themselves in the directory.* No members?  Not really. We had listed those people who self-described themselves as advocates, never realizing how quickly they would become overwhelmed by the number of people who needed their help. Nor did we realize that most were volunteers. As volunteers, with requests to work 24/7/365, many while maintaining other jobs, they could not sustain the work. Which is when the universe kicked in. Many readers of this blog know that my work in advocacy resulted from a heinous misdiagnosis in 2004. À la “hell hath no fury” – my total disgust with the healthcare system resulted in my work as Every Patient’s Advocate. Eventually I realized that if many people were doing the work I was doing, then many, MANY more patients would benefit. The AdvoConnection idea-seed took root in my head. The original AdvoConnection logo. Notice the link instead of the APHA logo in the middle. Here’s when I realized the universe was speaking to me, when I realized that what advocates needed was NOT about advocacy – most already know advocacy and know it well. What they really needed was help starting and growing a business so they could SUSTAIN their advocacy work! Make a living at it! Do good by doing well in business! So what does that have to…


 

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All We Really Need to Know About Being Good Advocates We Learned in Kindergarten

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All We Really Need to Know About Being Good Advocates We Learned in Kindergarten

As children across the US and Canada start kindergarten this time of the year, I’m reminded of Robert Fulghum’s book, All I Really Need to Know I Learned in Kindergarten, a classic, published more than 30 years ago. I’ve actually written about advocates and the kindergarten principles before, years ago, as applied to some real negativity we were experiencing as a profession then. But today’s piece is updated, much more positive, and contains some further advice not shared then. So much of this kindergarten wisdom is appropriate to our successful running of an independent advocacy or care management practice – no matter whether it’s back-to-school time or not. So, with a nod to author Fulghum, let’s review. 1. Be Respectful and Expect to Be Respected in Return This is 360o advice: be respectful of others, and expect them to return the same. Now, you might respond “Yeah… Duh! Of course!” but I’m constantly amazed at the stories I hear about disrespect in relation to advocacy.  I’ve heard about: Advocates who are disrespectful to providers, and on the flip side, advocates who don’t command respect from providers, not politely correcting them when those providers are less than respectful to them. Advocates who are disrespected by clients. That is unacceptable patient behavior. Advocates who talk baby talk to older people, or call them “honey” or “sweetie.” … and more. If advocates are to continue on our path toward become among the MOST ETHICAL of professions, we must always be respectful, and command respect in return. 2. Make Friends Early in advocacy, it seemed there was a great deal of tension among the pioneers who were starting this new profession. Further, many advocates were faced with providers who did not want them “interfering” in their relationships with patients. Now, 10 years in, I hear very little of that – at least not like we used to. In fact, as I observe advocates, whether it’s in the APHA Discussion Forum, or at our PracticeUP! Bootcamps, or at other events, the camaraderie is impressive, extremely helpful, and just plain delightful!  In particular, when advocates gather…


 

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