Patient Perspectives Resource Education Guide

 

Living With Pain: Patient's Perspective

The following presentations gives voice to the patient and shows clinicians how patients perceive their care and teaches us (the clinician) how we might remember the human in standing in front of us, rather than just A "4 o'clock hip".

Guests will share their experiences trying to find a healthcare practitioner who would listen and their journey to learn how to live with chronic pain.

Each year, the San Diego Pain Summit hosts a panel and/or presentations to represent the patient's voice. After each event, they will be uploaded onto this page. 

>> Please scroll past the videos for other online patient resources

The Lived Experience: A Conversation About Pain

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.

 

Patient Perspective panel from the 2019 San Diego Pain Summit moderated by Alison Sim. Panelists: Keith Meldrum, Kira Stoops, and Bronnie Thompson.

 

Patient Perspective panel at the 2018 San Diego Pain Summit 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. 

Pain Toolkit

(The following text was cut and pasted from the website)

"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

MyCuppaJo

(The following text was cut and pasted from the website)

"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 Chats

(The following text was cut and pasted from the website)

"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