An online pain patient survey is underway on the National Pain Report and the response thus far has been robust.
We invite you to take the survey (click here). Your voice matters.
Terri Lewis, Ph.D, has been asking pain patients for their input in a number of areas. Dr. Lewis is a pain patient advocate who is both a daughter and a mother of chronic pain sufferers. We found Dr. Lewis as she submitted comments on the National Pain Strategy which will be finalized later this year.
“The development of a National Pain Strategy can only become a meaningful exercise when we get a sufficient volume of consumer reports to extract meaningful information,” she said.
As National Pain Report covered, Dr. Lewis spoke at an international pain conference in Chicago earlier this month where she told physicians and researchers that chronic pain patients and their physicians must talk to each other more effectively.
“When consumers share their personal experience we can look for experiences that reflect whether our state and national policies are working, which regions we ought to be taking a closer look at, and how well secondary systems are supporting consumers within their health care system,” she said. “The lived experience of persons in local communities, help to identify the issues that begin at home. Consumers need not be afraid to share their experience here. Every voice counts and every voice matters.”
Three issues have become prominent in the national discussion about access to appropriate pain management for the more than 100 million persons who need specialized supports. Health care providers, consumers, and advocates are all struggling to adopt reasonable policy in response to the impact of changes imposed by the rescheduling of certain drugs into Schedule II.
First, in the current climate of insurance regulation, patients have little choice over their selection of pain care provider, particularly if they are in rural areas or if access conditions are imposed by payor sources. The actions of an unscrupulous provider can have significant negative impact on both quality of care and future access to care if or when the prescriber is tagged as abusing processes by regulators. Recent roundups in a number of states have resulted in dumping of patients with legitimate needs, leaving them vulnerable and without alternatives. The impact of this process on individuals remains largely undocumented, undetermined, and below the radar screen of health care providers.
Second, the rescheduling action undertaken by the DEA and FDA in response to the rise in deaths reported as opioid associated has had significant impact on patients who may receive under treatment (less than what is needed) or over treatment (over selection into costly tests and surgical installations) depending on the orientation of the only available provider. Both increase the risk of medical harm to patients and exposure to secondary injuries adding complexity and additional cost to care, along with increased disability.
Third, patients rely on secondary community systems – pharmacy access, emergency room visits, which results in the accrual of increased latent costs. Transportation costs, lost care provider work days, and pharmacy rationing (the pharmacy crawl) have deleterious effects not only on conformance and adherence to medication protocols, but also increase stress on fragile resources and reduce the working alliance so necessary to assure intended outcomes. Many report this has significantly impaired their provider relationships and resulted in them being marginalized by their health care system because of their diagnosis.
Dr. Lewis will analyze the results and report back to our audience what she found out and what it might mean for pain patients and their families.
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