Nov. 21, 2017 Bimonthly U.S. Pain volunteer call - PowerPoint Presentation

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Nov. 21, 2017

Bimonthly U.S. Pain volunteer call

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Agenda

Welcome (1-2 minutes) Ambassador update - Lori Monarca and Jacki Drexel (10 minutes) Fundraising update - Casey Cashman

(3-5 minutes) State advocacy update - Shaina Smith (5 minutes) 

Federal advocacy update - Cindy Steinberg (5 minutes) General updates from other staff – Nicole Hemmenway (3-5 minutes) Questions - Open (3-5 minutes)

Keynote presentation: ”How to talk about pain so your doctor will listen” – Diane Cleverly, PhD (15-20 minutes) Questions - Open (3-5 minutes)Reminders:

You can ask questions by typing them into the control panel at right. We will answer questions at the end of all the updates and again after the presentation.A recording of this webinar will be provided in the newsletter on Dec. 1.

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Ambassador update

Lori

Monarca

and Jaclyn Drexel,

C

o-directors

of the Ambassador Network

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Ambassador update

The nominations for the 2018 Joselynn Badman Ambassador of the Year Award closed on November 15th. We want to remind nominees to submit any additional information by December 1 so we can tally the results.

Stay tuned for more information on our 2018 social media 30-Day Challenge.

Be sure to check out our website calendar for upcoming events/webinars at:  https://www.uspainfoundation.org/news-events/

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Ambassador update

A BIG thank you to all who participated, big or small, in September’s Pain Awareness month. We are excited about 2018 and have begun working to set new achievement goals. Remember to track your accomplishments and keep documentation/records. A submission form will be available soon to track activities

towards ambassadorship as well as to help identify Pain

Warriors of the Month (PWOTM).Take care of yourself over holidays.Rare Disease Day (RDD) is coming in February; start planning ways to get involved now!

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State advocacy update

Shaina Smith

Director of State Advocacy and Alliance Development

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State advocacy updateUpdates:

New York signed S 4733/A 7509, interchangeable biologic billRhode Island signed H.6124

, which expand coverage for chiropractic care

Action items:In need of patient stories to provide data to lawmakers about how patients are being forced off of their medications during the health plan year. Target states: CT, IL, NY

.https://www.surveymonkey.com/r/NationalNMSSurveyBiosimilars social media kit--Included as a for attendees are social media posts that highlights educational information from the FDA relating to this innovative technology. We're asking advocates to use the kit to

help raise awareness.

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Federal advocacy update

Cindy Steinberg

National Director of Advocacy and Policy

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Federal advocacy update

Now more than ever, urge everyone to speak out and use the political processEveryday we hear about the opioid crisis but pain is rarely if ever in the conversation

Access to opioids is being greatly restricted

For those helped by opioids, you must tell your storyPain is pervasive & will always be part of the human condition; we need access to effective treatments Urge support for:National Pain strategy

CDC data collection on chronic painIncreasing pain research budget at NIH to find more effective optionsCall your federal reps (Congressperson & Senators) & speak to health policy aide; make an appointment in the district office

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Fundraising update

Casey Cashman

Director of Fundraising

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Fundraising update

September fundraising efforts brought around $1100Fight Gone Bad on Nov. 4 raised nearly $18K!

GivingTuesday campaign

Special rewards and raffle prizes this year for donating any amount (even $1), including books, T-shirts, and ice packsWe will need your help sharing our posts on social media to spread the wordBlack Friday and Cyber Monday: shop using AmazonSmile!

Same prices and products, but when you select U.S. Pain as your beneficiary, we receive 0.5% of your purchase as a donation—at no extra cost to you!Points for Pain fundraiser is Jan. 11th

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Other staff updates

Nicole

Hemmenway

Vice President of U.S. Pain

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Other updates

Looking into launching Facebook support groups for chronic pain early next year.If you have experience moderating a Facebook support group and are interested in helping out, please email Emily (

emily@uspainfoundation.org

)

Themes for first two 

INvisible

Project editions in

2018:

Cluster

, headache, and migraine

edition

Osteoarthritis/chronic

low back pain

If anyone would like to participate, please reach out to Nicole (

nicole@uspainfoundation.org)

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Other updates

New resources for members:https://www.uspainfoundation.org/living-with-pain/

https://uspainfoundation.org/find-a-specialist/

https://uspainfoundation.org/find-clinical-trial/Congrats to ambassador and INvisible

Project editorial consultant Jenni Grover on publication of new book, Chronic Babe 101!

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Questions?

You can type in questions using the navigation bar at right.Or, feel free to reach out by email afterward:

Ambassador program --

lori@uspainfoundation.org & jaclyn@uspainfoundation.orgFundraising -- fundraising@uspainfoundation.org

State advocacy -- shaina@uspainfoundation.orgFederal advocacy -- cindy@uspainfoundation.org

General questions -- contact@uspainfoundation.org

If you haven’t signed up as an advocate/ambassador yet, you can do so here: www.uspainfoundation.org/get-involved

 

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Keynote presentation

Diane Cleverly, PhD

Founder of Concierge Conversations

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How to talk about pain

So your doctor will listen

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Who am I?

Dr. Diane Cleverley20 years experience educating physicians, pharmacists, and patients

We will discuss why and how you need to prepare for a successful doctors visitWhy is it important to discuss functional impact of pain, short-term and long-term goals for pain management and complementary therapies?

Changing the mindset of the patient visit

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Current Healthcare Climate

Did you know?

Per patient reimbursement by Medicaid/Medicare has dropped

“Doctor Shortage”: 46,000 primary care doctors short by 2020, and 45,000 specialists and surgeons in the next decade Increased pressure to see more patients per day

Walking in prepared helps you build a therapeutic alliance with your physician more quickly

http://www.medscape.com/features/slideshow/compensation/2014/public/overview#18

http://www.medscape.com/viewarticle/825369

http://www.aamc.org/download/153160/data/physician_shortages_to_worsen_without_increases_in_residency_tr.pdf

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Pain interferes with communication

SleepCognition (Pain and meds)

Non-verbal communicationPain is subjective

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How to report pain intensity

Pain is often reported on a scale of 1 to 10, like other symptoms

Pain is subjective and may not truly reflect intensity of the underlying pathology

People with chronic pain tend to “downgrade” their pain sensitivity, or have varying pain signals

PAIN RATING SCALE

1-3= not bothering you much at all; probably not taking meds or calling a doctor

4-5= you are aware of it, bothering you, but you can function, may or may not take meds

6-7= bothering you and most likely interfering with your function, you are seeking relief (meds or otherwise), may be calling doctor8 and up= Interfering with function, need relief of pain, and at levels 9 and 10 may be seeking emergent medical care.

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How to talk about function

Pain is a thief, it robs you of the life you had before you had pain

Pain can interfere with your ability to functionDaily Activities of Living are very important triggers for functional assessment in the medical community

The following are things you should talk to your doctor about:

Are you able to work?Are you able to engage in social activities?Can you exercise?How is your sleep?

Are you able to shop for and prepare meals for yourself?Are you able to do chores like laundry and cleaning?

Are you able to drive?

Are you able to handle your medication schedule?Are you able to handle your finances/pay your bills?What about bathing and personal grooming?Can you climb stairs/walk easily?

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How to set pain management goals

Short-Term goalsState clearly to your doctor your short term goal:

Reducing pain intensity from current state of ____ to ____ so I can restore function and (go back to work; cook meals again; socialize),Over the next 4-6 weeks

Remember, it’s a negotiation! Get those levels 5 or below!

Long-Term goalsPain managementGetting a diagnosisReducing risk of relapseGetting back to normal activitiesGetting back to work

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How to talk about complementary therapies

The pain foundation has a great list of complementary therapies

Pick one or two and include them in your goalsAsk your physician: Would X therapy be helpful in helping me achieve my short-term goal? Or Do you think I could try X therapy along with standard therapy to try to manage my pain better?

Your physician may have resources or suggestions for the best therapy to use adjunctively with standard therapy, so don’t be afraid to ask

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Final Thoughts

Think more business meeting, less social visit when you see your doctor

You have a goal to accomplish, stay focusedTake notesBring support, if needed

Track progress over time and refer back to goals on next visit

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If you need further help

www.conciergeconversations.com

Free program to help prepare for doctor appointments

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Questions & thank you!

You can type in questions

for Diane using

the navigation bar at right

.

Next volunteer webinar will be Jan. 16 at 1 pm EST; speaker to be announced.

For updates, you can

always check out:

www.uspainfoundation.org/get-involved/webinars/

Thanks for joining us!