Orofacial pain  – better recognition and care needed

In October, we conducted a survey of our consumer network on the impact of orofacial pain and whether there is a need for better recognition and care to help us inform our submission to the Australian and New Zealand Academy of Orofacial Pain’s discussion paper Improving orofacial pain management in Australia and New Zealand 2021.

Orofacial pain encompasses several complex painful conditions involving the mouth, face, head and adjacent regions. All of these conditions involve structures that are closely associated with essential functions of eating, breathing, communication, sight and hearing.

We received more than 60 responses in a matter of days detailing the significant concerns that so many consumers have. Almost all respondents told us there was a concerning problem with the recognition and management of orofacial pain. A number of you also said there was a need for improved training and education.

Among the comments to us were:

"It's jaw-dropping when (professional/medical) persons from so-called 3rd world countries seem far more familiar with these issues & types of pain than our supposed 1st world professionals. Horrifying to be honest. Hard to feel safe, hard to trust, and becomes an enormous challenge to save up so much money to get either very little, or no results, and the 'professional' seems to be 'winging it'!"

"We all have to wait so long before we get help from someone who really knows what we go through. No one ever seems sure who treats it, so you tend to just get handballed. Dr sends you to dentist but when it’s an inflammatory issue not mechanical dentist sends you back to the Dr who is clueless."

"This is life ending pain and no one knows what to do with you – you just get shuffled from one place to the next."

"For years I was told ‘it wasn’t possible’ or that I must be making it up. Finally, I found Drs who know, understood & helped to treat without blaming me. We have all worked hard to improve my pain but more Drs need to know more about this type of pain, we aren’t lying & it’s not the same as other types of nerve pain."

Full results of our consumer survey can be found here: https://www.painaustralia.org.au/static/uploads/files/orofacial-pain-survey-report-wfuycechtmlh.pdf

Our blog on this issue is also available here