Register Feb 2022

Patient Perspectives Resource Education Guide

 

Living With Pain: Patient's Perspective

Healthcare means nothing without the patient perspective. 

The content on this page serves two purposes:

1. To help clinicians remember who they are serving and how to listen to their patients.

2. To help those who are living with pain to understand that they are not alone. You have a voice, I hope you find inspiration here, for unless we understand we deserve better care and learn to demand it, things will not change. 

As a person who lives with pain, you deserve better care. It is my hope that the stories told here will help you learn to require that of clinicians, for to make a change, we must collectively demand it. 

Presentations can be viewed by clicking the corresponding title link.

 

>> For online patient resources, please scroll past the video links

Danger In Me, Safety In Me

Click on title link to watch this interactive exploratory hour with Trevor Barker from the 2021 SD Virtual Pain Summit. 

There were multiple breakout rooms as part of this session, these were not recorded.

Learn more about 'danger in me' 'safety in me' (DIM/SIM)

Seek First to Understand: Navigating the Language of Persistent Pain

Click the title to watch the presentation by Kat Gloor at the 2020 SD Virtual Pain Summit.

You’re a culturally-competent active listener who knows how to explain pain, so why doesn’t your patient get what you’re saying? Why can’t they accurately describe their pain experience, and what do they really mean when they give you a pain score? Effective communication is key to a successful therapeutic alliance, yet misunderstandings abound. 

This engaging presentation from an individual living with persistent pain examines the difference between what clinicians say and what a patient may hear.

Explore the language of lived experience and learn how the words you use affect adherence and outcomes from a patient point of view.

The Lived Experience: A Conversation About Pain

Click the title link to watch A Conversation About Pain presented at the 2020 Summit with Joletta Belton and Keith Meldum

This interactive, conversational format advances our understanding of pain through meaningful conversation and thoughtful exploration of the complexities of pain. Presenters Keith and Joletta will begin the session with an engaging conversational format. They will share their stories of living with chronic pain, their interactions with healthcare, and what it means to recover and live well with pain.

These unique insights from the patient’s perspective serve to broaden our understanding of pain and pain treatment, complementing scientific research and clinical expertise. Those in attendance are also invited to join the conversation and interact with the presenters.

2019 Patient Perspectives Panel

Click the title to watch the recording of this panel moderated by Alison Sim. Panelists: Keith Meldrum, Kira Stoops, and Bronnie Thompson.

2018 Patient Perspectives Panel

Click the title link to watch the recording of this panel moderated by Alison Sim. Panelists: Joletta Belton, Erin Jackson, and Mark Renard.

Patient Resources for Pain Management

The following resources contain information that may be helpful for people who are living with chronic or persistent pain. There is a great deal of misinformation found online about pain and pain management so I've collected some of the best that can be found online. 

None of these groups have any financial connection with the San Diego Pain Summit. 

 

Living Well With Pain

This website contains useful information for clinicians and patients. Please check out the Ten Footsteps Festival!

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MyCuppaJo

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"Making sense of pain through science and stories. Bridging the gap between patients and health professionals."

"From pain centered living to meaningful living

I finally understood I didn’t have to wait for the pain to be gone to get on with things. I could accept pain as a part of my current reality and make some space for it so there could be room for everything else, for all the things that mattered to me that I had been avoiding.

For so long I’d resisted that, thinking that it was giving in or giving up. That accepting pain meant conceding to the pain, conceding to a life of limitation and fear and worry. That acceptance was resignation. That it meant accepting a future of pain and suffering.

Acceptance

That’s not what acceptance is, though. Once I was able to accept the pain as a part of my life at that point along my path, once I was able to make some space for it, I was able to make room for all the other things in my life that I value and find meaningful.

I was able to rediscover my worth, my identity, my purpose. Myself. I was able to start living again, my life no longer on hold, pain no longer at the center of things.

Gradually, my perspective shifted. I began to see the world again, see that it had been there all along, despite my absence from it. I reengaged with the world through nature and photography, walking and movement.

I reengaged with myself again, doing things I enjoyed like cooking, reading, writing, and spending time with people I like a whole lot, especially with the loves of my life, my husband and my dog."

My Cuppa Jo website

 

Pain Toolkit

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"It is not meant to be the last word in pain self-management but a handy guide to help you get started

Living with pain himself, Pete Moore recognized that while writing the article that he had actually developed a toolkit of unique pain management skills to enable himself to become an active self manager and to subsequently lead a better life.

A persistent pain problem can be difficult to understand and manage on an everyday basis. This website has been developed from the Pain Toolkit, a simple information booklet that provides you with handy tips and skills to support you along the way to managing your pain.

Most people depend too much on their Healthcare Professional to solve or get rid of their pain. Many people suffering with pain forget that they have to work together with their healthcare professional in the management of their pain."

Visit the Pain Toolkit Website

 

Pain Chats

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"Understanding pain, and how to treat it, is your first step to living well again.
Discover the advice that helps people recover from long-term pain." 

"Many people don’t have access to the right health professionals for their persisting pain.The internet allows people to access lots of information, but the information about pain is usually not accurate. You can find a lot of scary information about bulging discs and nerve pain, but not much that provides real help and hope.

Our specialists are here to set the story straight, so everyone has access to good advice.

Our team and advisors represent people in pain, pain researchers, health care professionals, educators, writers, and technologists working together to improve access to the most useful information about pain and how to get on the path to recovery. We’re all here to break down the barriers to knowledge, so that everyone has access to high quality contemporary pain education (not just the people who can see the right health professionals)

We hope these resources and stories can grow sparks of hope, curiosity and possibility in our readers."

Pain Chats website

 

Chronic Pain Champions

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Chronic Pain Champions is an information resource/blog/support group to help chronic pain patients, their families, and friends, as well as healthcare professionals.

Chronic Pain Champions Website

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