Patient Navigator

A caregiver is someone who takes you to your doctor’s appointments, drives you to and from treatment, helps with activities of daily living, listens to you and lends a shoulder to cry on.  A diagnosis such as cancer can shake the foundation of any family and caregivers play a vital role for loved ones diagnosed with a serious illness.  Not only is the patient required to drop everything to focus on their treatment plan; caregivers must also, to some extent, put their life on hold to fill an important role.

All too often, however, caregivers’ needs go unmet and the burden they share goes unrecognized.  Doctors, nurses, family and friends make sure the patient comes first, and rightfully so.  However, caregivers also suffer as they watch a loved one battle illness.  Caregivers can feel as though they’re not doing enough to make their loved one comfortable or happy, despite their heroic efforts.  Caregivers can also receive the brunt of a patient’s anger, since typically this role  is filled by a person close to the patient.

The Journal of General Internal Medicine recently released ethical guidelines addressing patient, physician, and caregiver relationships. The medical community is increasingly respecting the role of caregivers and offering guidance on how to develop that relationship.  The guidelines aim to focus on a family-centered approach to treatment thereby decreasing the caregivers’ susceptibility to stress-related illness.  One such recommendation states that physicians should be more accessible and allow for more effective communication not only to the patient but also to the caregivers.

Remember that it’s important for caregivers to be mindful of their own health and needs. Take time out to go for a walk, rest, go to a movie.  Many communities offer respite services to give you some time away.  It can also be very helpful to seek out a caregivers support group in your local community.  Strength is gained when experiences are shared.

For more information and resources for caregivers, please visit the following sites:

http://www.cancer.gov/cancertopics/coping/familyfriends  – National Cancer Institute

http://www.cancer.net/patient/Coping/Caregiving American Society of Clinical Oncology

http://www.cfad.org/  Caring from a Distance

http://www.caregiver.org/caregiver/jsp/home.jsp  Family Caregiver Alliance

Submitted by Heather Matthews, Patient Navigator Cancer Research Specialist

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We all have cancer cells in our bodies.

How about that as a scary thought?  Every single human being on the planet has cancer cells in their bodies.  The good news is that, for most of us, our body’s natural defenses know how to defeat these defective, tumor-causing cells, and they never get the chance to grow up into a full-blown cancer.

I had the pleasure of attending a presentation by Dr. David Servan-Schreiber,  himself a cancer survivor, during the CancerGuides® training in June 2009.*  His delivery was amazing; his presence on the stage mesmerizing.  But what stuck with me was the plain truth – we all have cancer cells somewhere in our bodies. 

Accepting that fact also motivated me to learn more about what to do to try to keep those individual defective cells from joining together and having a cancer party.   Following his advice, outlined in the book “Anti-Cancer – A New Way of Life,” I have made small changes in my life since then.  I try to include freshly ground flax seed in my daily diet, usually in my morning oatmeal or yogurt.  I am proud to say that my ten-year old son often copies me, and grinds his own flax seed into his breakfast.  I definitely am more conscious of the amount of fruits and vegetables that we all eat.  I try to purchase eggs and meat that are grass-fed, and therefore richer in Omega-3s.   I am working to reduce toxic cleaning products and other indoor pollution from our house.   I exercise regularly.

I am falling down, however, on approaching life in a light-hearted way, with laughter and serenity.  Dr. Servan-Schreiber emphasizes that emotional toxicity is as harmful to the body as physical pollutants.  It is easy, and we are programmed very early, to react to problems with anger and negativity.  It is much more of a challenge to find the humor in adversity, to love those who make life difficult for us.  I think these are the most difficult changes of all – the internal ones of the basic self.   Whether you’ve had cancer or not, any person who wants to improve their chances of avoiding cancer should read Dr. Servan-Schreiber’s very important book.

 * CancerGuides® training is offered by the Center for Mind-Body Medicine in Washington, D.C.  It is the country’s only comprehensive training in integrative oncology. To learn more, visit http://www.cmbm.org/

Guest editor:  Debora Harvey, Director of Client Services at Patient Navigator, LLC

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This useful article from the National Comprehensive Cancer Center discusses cancer navigation options and defines different types of assistance that may be available.  Patient Navigator LLC is featured as a resource.   The article describes ways that navigators and case managers can help, including eliminating barriers to treatment, and it suggests other sources of support. 

The Case Manager or Patient Navigator: Providing Support for Cancer Patients During Treatment and Beyond – nccn.com.

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As the parent of an 8-month-old baby boy, I have been grappling with this difficult decision. I myself have always been wary of the flu shot, getting my first only last year while pregnant with my son. I have been vaccinating my son according to his pediatrician’s guidelines but all the while hesitant due to the highly publicized debate surrounding vaccines and autism. I would be lying if I said I didn’t closely monitor his behavior for weeks after receiving vaccines for any sign of something out of the ordinary. How was I to decide if my little boy, who’s so vulnerable to outside influences, should receive this new, controversial vaccine?

My husband and I starting taking a poll amongst our friends and family members, to which the results were completely split down the middle. Some said no, don’t do it, only give him the regular flu shot, others said yes, absolutely vaccinate for swine flu, you’re crazy not to. Our pediatrician said we should vaccinate. He said that doctors have been giving children vaccines for decades. Even the seasonal flu vaccine has a different composition each year so we should treat the swine flu shot as if we are giving him the regular seasonal flu shot. At this visit, my son left after having the regular seasonal flu shot and not the H1N1 shot. I needed more time to think about the subject and to discuss with my husband.

After countless conversations with friends in the medical field, friends with children the same ages and doing my online research at www.flu.gov and www.cdc.gov, I think we’re going to vaccinate. We haven’t done it yet, because the thought of giving my little guy two different flu strains in the same setting terrifies me but we’re going to vaccinate. Now all I need to do is get an appointment with the doctor’s office to vaccinate but they are completely booked. I guess that means that other parents are vaccinating too!

Please let us know your thoughts on the H1N1 vaccination and what you would do.  Submitted by Heather Matthews, Guest Editor, Cancer Research Specialist at Patient Navigator LLC

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We were recently on a radio show!  Patricia Grace of Aging with Grace interviewed Elisabeth Russell October 26.  If you are interested in hearing the types of things Patient Navigator can do to help you or a loved one, please listen in.  We welcome your feedback.

 

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First Annual Conference of National Association of Healthcare Advocacy Consultants (NAHAC) to Be Held Nov. 14-15; Board of Directors Announced

Conference Addresses Issues Defining Rapidly Growing Patient Advocate Profession

BERKELEY, Calif., Oct. 13 /PRNewswire/ — The National Association of Healthcare Advocacy Consultants (NAHAC), the nation’s first professional association for people working as healthcare and patient advocates, will hold its first annual conference November 14-15 at the University of California, Berkeley Clark Kerr Campus.

Conference workshops will include topics ranging from best practices for advocacy decision-making through solving health insurance problems, working effectively with physicians, legal issues, advocacy for children, and using technology to maximize efficiency. Case studies will also be presented.

“The founding of NAHAC and this inaugural conference are major milestones on the road to formalizing our profession, creating healthcare consumer protection standards and promoting this rapidly growing field of healthcare advocacy,” says NAHAC founder Joanna Smith.

Conference presenters/topics:

Ann Tardy, Founder, LifeMoxie; Keynote Presenter: “The New World of Healthcare Advocacy — Creating It Together!”

Jeff Belkora, PhD, Director of Decision Services and Assistant Professor of Surgery in the Institute for Health Policy Studies, U.C.S.F.: “Making Good Decisions in a Family Health Crisis”

Linda Garrett, Partner, Risk Management Services: “Confidentiality and Privacy Law for Healthcare Advocates”

Gail Gazelle, MD, Assistant Clinical Professor of Medicine, Harvard Medical School: “Inside the Doctor’s Mind: What Every Advocate Needs to Know”

Maggie Radany, RN, Founder, Radany & Associates: “How to Solve Health Insurance Problems and Be a Hero to Your Clients!”

Dianne Savastano, Founder & President, Healthassist: “Bringing Bob Home: A Case Study in Patient Advocacy”

Elisabeth Schuler Russell, Founder & President, Patient Navigator LLC: “Inside the World of Pediatric Healthcare Advocacy”

Judith Stark, Principal, Judith Stark Consulting: “Harnessing the Power of Technology Solutions for Healthcare Warriors”

Inaugural members of the NAHAC Board of Directors:

President: Joanna Smith, CEO, Healthcare Liaison, Inc., NAHAC Founder

Vice-President: Elisabeth Schuler Russell, Founder & President, Patient Navigator LLC

Secretary: Ricka L. White-Soso, MSW, private healthcare advocate and consultant of FLW Living Well Services

Treasurer: Maggie Radany, RN, MPP, Radany & Associates, health insurance consultant and healthcare advocate

Representation of the Founding Members: Laura Weil, Director, Sarah Lawrence College Master’s Degree Program in Health Advocacy

NAHAC membership is open to individuals interested in healthcare advocacy.

For the conference brochure and more information about NAHAC visit: http://www.nahac.memberlodge.com

 SOURCE National Association of Healthcare Advocacy Consultants

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Do you have a quick health care, medical, cancer care, chronic disease, caregiving, elder care or administrative or integrative care question you would like answered?  Have you been getting lost in the medical information maze on the Internet?  You don’t have to feel overwhelmed any longer.   Stop searching!

Patient Navigator LLC is pleased to announce a new, free service.  “Ask A Navigator” is designed to let users ask a quick question and get a quick answer.  We have access to experts in many health care fields who have personal experience navigating many illnesses, conditions and aspects of our medical system.

I hope to have this service up on www.patientnavigator.com very soon.

In the meantime, you can ask your question directly here via the comment section on this blog and it will be answered here.  If it’s something that would benefit others, please use this forum.  Or send  your question to:  ask.a.navigator@patientnavigator.com

We look forward to helping you.

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The September 12 New York Times carried a piece by Lesley Alderman titled, “After a Diagnosis, Someone to Help Point the Way.”  http://bit.ly/2SZ0Er

It was very well done, but as usual with these types of stories, does not paint the entire landscape of the emerging profession.  It is unfortunate that the author focused on one advocate who charges $200 an hour for her services.  The extensive reader comments on the “Well” blog following the article help to flesh out the story.

There are many individuals out there trying to help others navigate the health care system.  I started my company, Patient Navigator (www.patientnavigator.com), after struggling through my 2-year old daughter’s journey through brain cancer. I will never forget the moment of diagnosis and being cast into the cancer universe without a lifeline. Her miraculous survival has taken me down this path now, after a 24-year career in government.

Believe me, most of us doing this are doing it from the heart. I talk to anyone for free and often a simple phone conversation can help overcome a major obstacle. I would never dream of charging $200 an hour. This is not something one does for the money. It’s to make sure other families don’t suffer through what we suffered through and to offer help and problem solving so that they can focus more on their recovery.

Navigating a serious illness affects the whole family, finances, jobs, daily life. There is much more that a medical mentor, patient navigator or cancer coach offers than just help with getting appointments.

We individuals are finding each other and have formed a National Association of Healthcare Advocacy Consultants. We are casting a wide net to bring together like-minded people. To learn more, visit http://www.nahac.com.  Our inaugural conference will take place November 13-15 in Berkeley, California.

We have been blessed with our daughter’s survival and I plan to spend the rest of my life thanking God for that through the work I do.

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On June 22, NPR reporter Richard Knox aired this story during the “Morning Edition” broadcast.  It was an excellent piece profiling efforts by an individual and a volunteer organization to help patients and families get the care they need to navigate our health care and elder care systems.  Each time the media does a piece on the needs of patients and the role of advocates, it helps to make folks aware that many of us are out there to do just that.  It also helps advocates and navigators to find each other! 

 I encourage you to listen to the whole piece.  Mr. Knox  followed up in a blog post on June 25 in which Patient Navigator LLC was mentioned as a resource.  http://tinyurl.com/loaz9k  National Public Radio does an superb job reporting on health care and health care reform.  You can learn more by going to www.npr.org

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The March 29, 2009 edition of Parade magazine featured an article about the new specialty of patient navigation.  The article highlights some of what navigators can do.  For now, the National Cancer Institute has undertaken several pilot projects to train and deploy navigators in medically underserved areas.   But as the article also correctly points out, patient navigators can help anyone who finds the health care system confusing.  Patient Navigator, LLC, my company, has almost five years of experience  navigating on multiple fronts:  cancer diagnosis, long-term chronic diseases, elder care transitions.  Please visit www.patientnavigator.com  to learn more.  I am happy to answer questions via this blog or through the website.  Here is the parade article:   http://www.parade.com/health/2009/03/patient-navigator.html  As the article concludes, and I agree, “you don’t have to go it alone.”

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