Twinkle VanFleet, Sacramento California. Bakken Award Recipient 2015. Received from Dr. Earl Bakken, Medtronic Co Founder in Kona Hawaii, January 16, 2016.
About the Bakken Invitation Inspired by Medtronic co-founder and philanthropist, Earl Bakken, the Bakken Invitation celebrates and connects people who, with the help of medical technology, have overcome health challenges and are now making a difference in their communities.Empowering patients to better manage their health is a key element in Medtronic Philanthropy’s approach to expanding healthcare access to the underserved. By sharing and celebrating stories of patients from all over the world, the Bakken Invitation is designed to not only provide valuable information and inspiration to others, but also foster a global movement of people who “Live On. Give On. ”Get involved at www.LiveOnGiveOn.org
1.
Share a Story For every story shared on the Live On. Give On. global online community, Medtronic Philanthropy will donate $10 to Project HOPE to help ensure that medical technology is available in underserved communities around the world.2.
Apply or nominate The Bakken Invitation Award recognizes outstanding contributions of service, volunteerism and leadership around the world. Selected Bakken Invitation Honorees will earn a $20,000 (USD) grant from Medtronic Philanthropy to direct to a charity of their choice, and a trip to Hawaii for a celebration event to meet Medtronic co-founder Earl Bakken.
Applications for the 2016 are now open.
Applicant Criteria: Individuals who, with the help of medical technology, are giving their time and talent to improve the quality of life for others. Nominees must be 14 years or older.Individuals must be using an approved medical device therapy to treat one of the following disease categories: heart disease; diabetes; chronic pain; spinal disorders; or neurological, gastroenterological and urological disorders. All applicants with eligible medical technology are welcome to apply, regardless of device manufacturer.Applicants must have an established relationship of involvement with a legal nonprofit organization for six months or more.3.
Connect with the Community Medtronic also hosts a global online community where all patients can share how they are giving back after receiving extra life from a medical device.
At http://www.LiveOnGiveOn.org, they can connect with other people who share similar health conditions and charitable passions in their hometown and around the world.“What are you doing with your extra life?”That’s the question from Medtronic co-founder, inventor and philanthropist Earl Bakken that inspired the Bakken Invitation. He acknowledges that his pacemaker, insulin pump and heart stents have given him “extra life,” time he uses to support causes he cares about. Earl knows the gift of extra life is powerful. And while each person chooses how to use their extra time, it is his enduring hope they consider how to give back, in big or small ways.
As a 2015 Bakken Invitation Honoree from Sacramento, California. I wish you all well.. and enough. If you need any help with the nominee or application processes, I’ll do what I can to assist you through it.
Honored, privileged and grateful – Grant recipient: @powerofpain International Pain Foundation, your power of pain headquarters.
National Pain Strategy PAINS Collaborators Meeting Recap
By Barby Ingle, Power of Pain Foundation President
On June 29 and 30, 2015, the Pain Action Alliance to Implement a National Strategy (PAINS), a group of over 100 pain collaborators and stakeholders, came together in Washington DC to discuss the National Pain Strategy (NPS). The purpose was to provide attendees an opportunity to discuss the NPS and find areas of agreement on next steps, collaborations, priorities, and to hold accountable those responsible for implementation.As the president of the Power of Pain Foundation, I was invited to participate. I went into the meeting with some preconceived notions based on little happening since the Institute of Medicine’s report in 2011 and didn’t expect much to be accomplished. To my great surprise, the meeting exceeded my expectations. I left the meeting feeling that a path toward implementation of stronger access to care issues was clarified as a result of the meeting. I am excited to be one of the attendees present that will be helping move a chronic pain agenda forward, making a difference in the lives of those living with pain.The goals of the meeting were to encourage collaboration among key pain community leaders, to promote the NPS report and build enthusiasm for it, and to facilitate conversations about how to move forward to implementation of the strategy outlined in the report.For me, the meeting clarified the path ahead for the NPS in terms of priorities,implementation, next steps, funding,leadership and accountability. One of the unintended outcomes from the meeting was the consensus to support the messaging of the Chronic Pain Advocacy Task Force (CPATF). The CPATF is a group of 17 consumer advocacy groups convened by the State Pain Policy Action Network (SPPAN), which is a program of the American Academy of Pain Management (AAPM). As a founding member of the CPATF and the representative of one of the 17 groups involved, I was very proud to see that our work was recognized by this larger group of collaborators and stakeholders. As agreed upon, the core messages are: Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions.Chronic pain is both an under-recognized and under-resourced public health crisis with devastating personal and economic impact. Effective chronic pain care requires access to a wide range of treatment options, including biomedical, behavioral health and complementary treatment. Denying appropriate care to people with chronic pain is unethical and can lead to unnecessary suffering, depression, disability, and even suicide.
The Power of Pain Foundation is seeking a volunteer who can commit to approximately 5 hours per month to run our 2016 Webinar project. Some media background is required. Duties include but are not limited to contacting speakers, confirming dates and times. You would provide confirmation details to Executive Director Ken Taylor in a timely manner for promo purposes. Set up webinar page, and run webinar software during events. POP President, Barby Ingle will be serving as host. If she is unable to host, you, the Webinar Director will fill in. The title of your position is IPF Webinar Director.
The West Coast Pain Summit was held on November 14, 2015 at the Elk Grove Public Library Conference Room. In attendance was Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com), MarLeice Hyde – Erasing Pain (erasingpain.com) and Michael Connors, LVN. Harmony Home Care (harmonycareathome.com). We had local and out-of-town attendee’s join us. Our Power of Pain Foundation Delegates Erik and Kharisma VanFleet assisted as needed and 9-year-old ‘Tai Howard offered a friendly smile and a well-behaved demeanor.
Mr. Clete Dodson won our Power of Pain Long Sleeve Shirt chosen from the in person drawing. Monique Maxwell was chosen for our #NERVEmber silent drawing.
My presentation included, but was not limited to:
<Begin>
Welcome to the First Annual West Coast Pain Forum hosted by the Power of Pain Foundation.
This year hosted and sponsored by both the Power of Pain Foundation and Medtronic Neuromodulation.
Our topics today include Access to Care, Advocacy and Neuromodulation with Medtronic Pain Therapies from Medtronic.com and TameThePain.com
Access to Care
Patient Rights
There are 8 key areas to the Patients’ Bill of Rights
You have the right to accurate and easily understood information about your health plan, healthcare professionals, and health care facilities.
You have the right to your choice of providers and plans.
You have the right to emergency services. (Emergency department, urgent care)
You have the right to take part in treatment decisions.
You have the right to respect and non-discrimination
You have the right to confidentiality. (Privacy of healthcare information)
You have the right to file complaints and appeals.
You have the right to your consumer responsibilities. (Take an active role in your own health and well-being. Doctors are only a tool, too. )
Patient Communication
Understand your symptoms
Communicate with caregivers and healthcare professionals
Communication is essential.
Become an expert in your pain
Be prepared when attending your doctor’s visit.
Keep a pain journal.
Write down your questions.
Do you have concerns about your medication, or treatments?
Take notes.
Have a shared understanding of your pain and symptoms.
Get emotions under control.
Be assertive, but listen to others.
Describe your pain. (Don’t just say its pain. Does it burn, stab, pinch, tingle. Does it feel like cutting, aches, or throbbing? Is it localized or all over? Is it instigated by stress, depression, emotions?) Your doctor can’t help you if you’re not able to communicate.
Take someone with you to your appointments.
Take responsibility in reaching goals.
Caregivers: Be mindful and assertive in caregiving. According to the Department of Pain Medicine and Palliative Care at Beth Israel Hospital in New York, a family caregiver is “anyone who provides any type of physical and or emotional care for an ill or disabled loved one at home”. For this definition, “family” refers to a nonprofessional who is called “family” by the person who is sick. Sometimes, family is whoever shows up to help. (IN the FACE of PAIN, 5th edition, page 40)
Patients
Be easy on your caregiver without them you might not have any one to care for you. If you’re both a patient and a caregiver, be easy on each other. No one knows better than both of you.
Reducing Conflicts
Keep one network of physicians. One primary care provider, let referrals be given by only him or her.
Use only one pharmacy. Have medications sent to the same location. Pick them up from that location.
Don’t allow more than one physician to prescribe you an opioid pain medication.
The PDMP/ Prescription Drug Monitoring Program contains records of your prescribing history and is maintained and reviewed for changes in your habits.
When visiting ED’s describe your pain on the 0 – 10 NRS or Numeric Rating Scale which is most commonly recognized in emergency care. The NRS Scale for pain measures the intensity of your pain. It’s the 11 point numeric scale with 0 representing “no pain” and 10 representing “the worse pain imaginable”, “as bad as you can imagine” or unimaginable and unspeakable pain”.
Don’t tell the doctor your pain is an 11 or 20. You may be found unbelievable and your access to timely and proper care may be delayed, or in some instances even denied. You want them ready and willing to assist and care for you without second guessing.
*Adherence
Medications don’t work if we don’t take them. They’re prescribed to be taken as directed. Not doing so can lead to flare ups, increased pain, adverse reactions, withdrawal and misuse.
Examples of non-adherence
Not filling prescriptions
Not picking up filled prescriptions from the pharmacy
Skipping doses
Stopping medication before instructions say you should
Taking more than instructed or at the wrong time of day
*(IN the FACE of PAIN, 5th edition, page 16)
Potential setbacks
Many patients, including myself, have a severe Vitamin D deficiency in addition to the dystrophy caused by their diseases, or syndromes. Dystrophy is defined as – a disorder in which an organ or tissue of the body wastes away. This includes the bone and tissue in the mouth, jaw, teeth, and gums. Access to care can be a setback when our teeth decay, break away, or we’ve lost them as a result. Lacking dental insurance is an issue of its own. Judgement regarding addiction, misuse and drug seeking can hinder care until each time we prove otherwise. Additionally, BiPAP and CPAP use can contribute to dry mouth and decay. Moisture removed from the mouth is another price we pay just to breathe.
AB 374
The California Legislature approved a bill (Assembly Bill 374) the second week of September. Step Therapy required that a patient try and fail (fail first) a medication before being allowed to take the one their physician would have otherwise prescribed for them. AB 374 now allows providers in California to fill out a form to bypass step therapy requirements.
The PA Shuffle: Prior Authorization; information on our efforts can be found at our table, next to our ADF Policy efforts.
An energy assistance program is available through SMUD for qualifying patients who use specific medical devices. You can request the Medical Assistance Program Application by calling the Residential Inquiries number located on your bill.
Each of the above can assist in access and care. ( 7 min ) ^
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Introduce
Pain Clinic (15 mins)
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Break, meet and greet, #painPOP info
We’d love to have you take part in our #painPOP in the parking lot after the conference for photos and a bit of fun in raising awareness for National Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome Month. Our #painPOP campaign is participate or donate. Accept a challenge or donate to our cause.. I challenge all of you to raise awareness for the painful, debilitating and often progressive Neuro autoimmune illness that desperately needs a cure, an understanding for better quality of care, early diagnosis for stabilization or remission, and continued education and support materials, programs, free public educational events and conferences that we provide free to patients, caregivers, the healthcare community and the general public. We can’t do it without the help of awareness and funding. If you didn’t receive your raffle ticket joining us today, ask for one. Check NERVEmber.org tomorrow to see if you’ve got the winning numbers. You’ll be contacted to be sent your prize. Medtronic is up next with a demo, overview and a Q & A session. Enjoy each other!
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Introduce
Medtronic
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Advocacy
The Power of Pain Foundation Co-Sponsored SB 623 ( Abuse-deterrent Opioid Analgesics ) with Assemblyman Jim Wood and attended the live press conference held at the California State Capital on March 24, 2015. We will continue to support this bill in 2016. The bill will provide a safer alternative option to opioid medications by deterring several non-swallowing ways opioids can be abused.
Getting involved
You can join our international Delegates team by visiting: powerofpain.org/delegates-of-popf
We’re always looking for committed local volunteer advocates to support our legislative and policy efforts. The Power of Pain Foundation is a member of:
The Consumer Pain Advocacy Task Force (CPATF) which is comprised of national leaders and decision-makers from 16 consumer-nonprofit organizations that are dedicated to patient well-being and supporting the use of effective methods for pain treatment. The State Pain Policy Advocacy Network (SPPAN) first convened these leaders in March 2014 to organize a collective action effort to benefit people with pain. consumerpainadvocacy.org
SPPAN is an association of leaders, representing a variety of health care and consumer organizations and individuals, who work together in a cooperative and coordinated fashion to effect positive pain policy on the state level—policy that guarantees access to comprehensive and effective pain care for all people living with pain. Power of Pain Foundation is one of the original SPPAN partners. sppan.aapainmanage.org/
As POP Advocacy Director (POP 2011-12) and a SPPAN leader since 2013, locals would be working with me, as needed, to attend and represent us at the Capital.
We thank you all for attending today. We look forward to seeing you again next year. Please visit powerofpain.org for our education, awareness, advocacy and access to care missions.
<End>
#painPOP
After the conference we popped the pain out of ’em! #painPOP
#painPOP with attendees from WCPS
Published on Nov 14, 2015
#painPOP with some of the attendees from the POP’s West Coast Pain Summit 2015 for neuropathy awareness in #NERVEmber #ihavethenervetobeheard #doyouhavethenervetobeheard #powerofpain http://PowerofPain.org/conditions #ShareAndMakeAware #ParticipateAndOrDonate
Additional photos can be found on the Power of Pain Foundation’s Facebook Page at facebook.com/powerofpain in the 2015 POP Events Album.
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Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Twinkle VanFleet – Advocacy Director (powerofpain.org) and Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com).
The 8 key areas of the Patient’s Bill of Rights
Information for patients
You have the right to accurate and easily understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, help should be given so you can make informed health care decisions.
Choice of providers and plans
You have the right to choose health care providers who can give you high-quality health care when you need it.
Access to emergency services
If you have severe pain, an injury, or sudden illness that makes you believe that your health is in danger, you have the right to be screened and stabilized using emergency services. You should be able to use these services whenever and wherever you need them, without needing to wait for authorization and without any financial penalty.
Taking part in treatment decisions
You have the right to know your treatment options and take part in decisions about your care. Parents, guardians, family members, or others that you choose can speak for you if you cannot make your own decisions.
Respect and non-discrimination
You have a right to considerate, respectful care from your doctor’s, health plan representatives, and other health care providers that does not discriminate against you.
Confidentiality (privacy) of health information
You have the right to talk privately with health care providers and to have your health care information protected. You also have the right to read and copy your own medical record. You have the right to ask that your doctor change your record if it is not correct, relevant, or complete.
Complaints and appeals
You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the actions of health care personnel, and the adequacy of health care facilities.
Consumer responsibilities
In a health care system that protects consumer or patients’ rights, patients should expect to take on some responsibilities to get well and/or stay well (for instance, exercising and not using tobacco). Patients are expected to do things like treat health care workers and other patients with respect, try to pay their medical bills, and follow the rules and benefits of their health plan coverage. Having patients involved in their care increases the chance of the best possible outcomes and helps support a high quality, cost-conscious health care system.
According to the presentation at the POPF Midwest PAIN Expo attendee’s learn the importance of the of the “Patient Bill of Rights” (“Patient Rights” 3). (et al.)
We look forward to seeing you next year!
Twinkle VanFleet, Sacramento resident and pain patient. Executive Board Member and Advocacy Director, Power of Pain Foundation.
As the Committee Chairwoman for Advocacy, I would like to emphasize the importance of connecting a unified populace for better access to care.
Our community constitutes a commonwealth of patients with various diseases and who are in various stages of their illness. The Power of Pain Foundation
advocates for several different distinctive medical conditions.
I am now seeking applicants from those interested in joining my committee. These are all volunteer positions. Since I am diverse, I prefer those choosing to
work with me to be also. I appreciate diversity and so does the Power of Pain Foundation.
If you are ready to help work on access to care, abuse deterrent formulations, prior authorizations, specialty tier’s, step therapy/fail first and other
issues that we can tackle together, please contact me.
I am passionate about my role as Advocacy Director. I am seeking 7 individuals who aren’t afraid to raise their voice when needed.
1- Legislative and Advocacy Assistant (National)
1- Research (National)
1- CRPS/RSD (National)
2- Neuropathy/Nerve (National)
2- Help oversee my Region. Region 1 (NW) including Alaska, California (Northern), Idaho, Montana, Oregon, Utah, Washington, Wyoming
While a pain related illness with experience and knowledge is a plus, it is not necessary.
With the position you are interested in, Tell me about yourself and how can we help each other to help others?
List any experience. Please don’t over-think it.
Together, we can!
~Twinkle VanFleet
Executive Board Member/Advocacy Director Power of Pain Foundation
Thank you to everyone who participated in this video. Without you it would not have been possible. Thank you Jane Gonzales for writing the beautiful song, My Only Consolation.
Thank you Vanessa Lara-VanFleet, California Representative POPF for the translations. You did amazing as I knew you would.
Thank you Kurtis VanFleet National Youth Ambassador POPF for the unique Photo’s. One taken in West Sacramento, the other in Sacramento CA.
Thank you Barby Ingle, Ken Taylor.
Together we can! And we do!
Power of Pain Foundation is a National 501(C)(3) Nonprofit charity serving the pain citizens of America through education, awareness, social events, and access to care services.
2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.
As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get the care they need, even if in this small way, so that they might have a better quality of life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.
Their adult world comes soon enough.
Each parent will choose their child’s options, they may even decide on something else along the way…
Any recognition for Megan, Tori and Gracie is much appreciated.
When your day is long
And the night, the night is yours alone
When you’re sure you’ve had enough
Of this life, well hang on
Don’t let yourself go
‘Cause everybody cries
And everybody hurts sometimes
Sometimes everything is wrong
Now it’s time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you’ve had too much
Of this life, well hang on
Everybody hurts
Take comfort in your friends
Everybody hurts
Don’t throw your hand, oh no
Don’t throw your hand
If you feel like you’re alone
No, no, no, you are not alone
If you’re on your own in this life
The days and nights are long
When you think you’ve had too much of this life to hang on
Well, everybody hurts sometimes
Everybody cries
Everybody hurts sometimes
And everybody hurts sometimes
So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts
——
Hang on!
Sometimes everybody cries…
——
Never let go.. , you want to let go, you don’t have to, you really can hold on,
Don’t let go, live, you have to want to live, we don’t want to die, on the contrary..
Inspired by Medtronic co-founder and philanthropist, Earl Bakken, the Bakken Invitation celebrates and connects people who, with the help of medical technology, have overcome health challenges and are now making a difference in their communities.Empowering patients to better manage their health is a key element in Medtronic Philanthropy’s approach to expanding healthcare access to the underserved. By sharing and celebrating stories of patients from all over the world, the Bakken Invitation is designed to not only provide valuable information and inspiration to others, but also foster a global movement of people who “Live On. Give On. ”Get involved at www.LiveOnGiveOn.org
The 
Caregivers: Be mindful and assertive in caregiving. According to the Department of Pain Medicine and Palliative Care at Beth Israel Hospital in New York, a family caregiver is “anyone who provides any type of physical and or emotional care for an ill or disabled loved one at home”. For this definition, “family” refers to a nonprofessional who is called “family” by the person who is sick. Sometimes, family is whoever shows up to help. (IN the FACE of PAIN, 5th edition, page 40)
After the conference we popped the pain out of ’em! #painPOP
Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Twinkle VanFleet – Advocacy Director (powerofpain.org) and Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com).
RSD Advisory- Where Chronic Pain & Depression Collide 