Thursday, 14 June 2018

Survey Reveals Discontent Among Chronic Pain Community

Today's post from (see link below) reveals early results from a survey concerning chronic pain and the patients who have to live with it. It's not specifically directed at neuropathy patients but we have to accept that nerve damage patients belong to the chronic pain community and as such, this is very relevant information. It is worth clicking on the link to the survey and taking it yourself - the more voices that are heard, the better chance for better care. It's an American survey but there's nothing to prevent anyone from anywhere across the world filling it in and as such a much broader picture of world-wide trends will be revealed. You may actually find that the questions are phrased in such a way that you fell that your voice is finally being heard. Well worth the effort.

Survey Finding Chronic Pain Community Energized and Angry By Ed Coghlan.   Posted on June 10, 2018 

“They are amazing and they are pissed.”

That is how Terri Lewis Ph.D. described the early responses she has been receiving from a survey we are promoting on the National Pain Report.

The survey–which Dr. Lewis developed– is designed to capture data from the chronic pain community that can be shared with the FDA at its July 9 Public Meeting for Patient-Focused Drug Development on Chronic Pain

Dr. Lewis is keeping the survey open until June 17, at which time she’ll cut off the survey to prepare her findings for the meeting in July.

If you haven’t taken the survey yet, you may do so by clicking here.

At this point persons from all 50 states have responded, “some states far more than others,” she said.

As has been the case since the survey started, the respondents have been mostly women (80%) and over 40 years old, but she’s seeing a small increase in the number of people under 17.

In fact, the largest group of respondents is in the 50-to-59 year old range, which she points out is in sharp contrast to the JAMA article released last week that asserts the largest amount of opioid related deaths occur in people in their twenties.

“There are only a few respondents from minority groups, although the number has been picking up of late,” she added.

Dr. Lewis points out that a big number of people who are responding would otherwise be in the prime of their working and economic lives were it not for injury and illness that they endure. Public Meeting for Patient-Focused Drug Development on Chronic Pain
“They are very unhappy with the system they have to rely on. They are extraordinarily negatively impacted by shrinking footprint of healthcare and public policy,” she pointed out.

Many of the respondents have been dealing with their illnesses and injuries for many years and had achieved some degree of stability of care until the opioid wars destabilized their provider system.

“Their disruptions are not disruptions of their own making – they are systemic in nature and for the most part imposed through public policy with the opioid wars and insurance changes.” she said.

“These are simply sick people, invisible to the system, who have been left to cope on their own,” Dr. Lewis added.

The goal of the survey is to bring the story of the chronic pain community to the FDA in July.

Let your voice be heard.

Follow Dr. Lewis on Twitter: @tal7291

Follow us on Twitter @NatPainReport

Follow the author on Twitter @edcoghlan

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