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“Faces of Pain”: A timely reminder to consider the individual circumstances of people living with chronic pain in pain or opioid research

Ria Hopkins
image - Ria Hopkins Square

Chronic pain affects one in five Australian adults, and approximately three million Australian adults use opioid medicines annually1, 2. “Faces of Pain”, the theme of National Pain Week 2020 (27 July - 2 August), reminds us that behind these numbers are people with their own stories, experiences and treatment goals.

The use of opioids for chronic pain is controversial: meta-analyses report limited effectiveness of the long-term use of opioids for chronic pain and the associated risks of adverse events may outweigh benefits for many people3.

Many people credit pharmaceutical opioids for allowing them to live and function with their pain conditions. However of particular concern, there has been a significant rise in overdose deaths involving pharmaceutical opioids in Australia and globally. Although opioids are considered high-risk medicines, we cannot lose sight of individuals or their need for, and right to, effective pain management.

Controversial responses

Some responses to the rise in opioid harms have been criticised for being heavy-handed and reactionary. Prescribing guidelines or regulatory responses applied indiscriminately or arbitrarily have the potential to cause more harm.

When the US Centers for Disease Control and Prevention released guidelines for opioid use in chronic pain in 20164, disturbing reports followed of people having their medicines abruptly withdrawn without consultation or support and of doctors refusing to see patients taking opioids. These actions place people at risk of withdrawal, increased pain and distress, and led to the guideline’s authors writing in 2019 that the guidelines were designed to assist prescribing, rather than to be a ‘one-size-fits all’ approach to clinical decision-making5.

Access to services

Where opioid tapering or cessation is possible and acceptable to people with chronic pain, healthcare professionals must work in partnership with individuals to plan and undertake this. In addition, people must be able to access evidence-based pain management services such as physical or functional rehabilitation or psychosocial treatments.

In Chronic Pain Australia’s 2020 National Pain Survey, 48% of the 1217 respondents reported that accessing other health professionals was not easy, and 84% reported that accessing these services was unaffordable6. The Pain and Opioids in Treatment (POINT) study involving over 1500 people using opioids for chronic pain found access and affordability presented barriers to service use7. Other Australian research has also reported low rates of referral to specialist pain management programs, and these services often have waiting lists of a year or more8, 9.

Fighting stigma

Focusing on opioids as a regulatory issue also has the side effect of stigmatising people with chronic pain, with rhetoric often mirroring that of the “War on Drugs”. People have reported experiencing stigma, being labelled as ‘drug seekers’ or having their pain not treated seriously, and this stigma extends to people seeking treatment for pain even if they don’t use opioid medicine10.

In the 2018 National Pain Survey, 86% of respondents reported stigma or negative attitudes from health professionals11. In the 2019 and 2020 surveys, people living with chronic pain rated experiences of stigma as 7/10 on average, where 0 was not at all and 10 was constant6, 12. People have reported the perception that chronic pain is regarded by some practitioners as ‘too difficult’, leading to suboptimal management, particularly compared to other chronic illnesses13.

Our work

Work is currently being undertaken at NDARC to explore the experiences of people living with chronic pain when accessing healthcare services. Using longitudinal data from the POINT study, as well as linked health service data, we aim to describe current rates of, as well as barriers and predictors of, pain management service use. We are also undertaking interviews with people living with chronic pain, to gain a better understanding of what it is like being a person living with chronic pain and accessing healthcare in Australia.

National Pain Week is a timely reminder that behind the statistics are individuals whose lived experiences must be understood to inform service planning and ensure current approaches to pain and opioid use are benefitting people who live with pain.

More information:

Chronic Pain Australia is a grass-roots voice for Australians living with chronic pain. National Pain Week 2020 runs from the 27 July to the 2 August and includes events promoting the theme “Faces of Pain”.

For more information about current work being undertaken at NDARC, including information about how to get involved in our study about the experiences of people living with chronic pain, you can contact Ria Hopkins at ria.hopkins@unsw.edu.au.


1.            Blyth, F.M., et al., Chronic pain in Australia: a prevalence study. Pain, 2001. 89(2-3): p. 127-34.

2.            Lalic, S., et al., Prevalence and incidence of prescription opioid analgesic use in Australia. Br J Clin Pharmacol, 2019. 85(1): p. 202-215.

3.            Noble, M., et al., Long‐term opioid management for chronic noncancer pain. Cochrane Database of Systematic Reviews, 2010(1).

4.            Dowell, D., T.M. Haegerich, and R. Chou, CDC Guideline for Prescribing Opioids for Chronic Pain--United States, 2016. JAMA, 2016. 315(15): p. 1624-1645.

5.            Dowell, D., T. Haegerich, and R. Chou, No Shortcuts to Safer Opioid Prescribing. New England Journal of Medicine, 2019. 380(24): p. 2285-2287.

6.            Chronic Pain Australia, National Pain Survey 2020. https://www.nationalpainweek.org.au/index.php?option=com_content&view=article&id=368.

7.            Nielsen, S., et al., Health service utilisation by people living with chronic non-cancer pain: findings from the Pain and Opioids IN Treatment (POINT) study. Aust Health Rev, 2016. 40(5): p. 490-499.

8.            Briggs, A.M., et al., Consumers' experiences of back pain in rural Western Australia: access to information and services, and self-management behaviours. BMC Health Serv Res, 2012. 12: p. 357.

9.            Hogg, M.N., et al., Waiting in pain: a systematic investigation into the provision of persistent pain services in Australia. Med J Aust, 2012. 196(6): p. 386-90.

10.         Antoniou, T., et al., "Like being put on an ice floe and shoved away": A qualitative study of the impacts of opioid-related policy changes on people who take opioids. Int J Drug Policy, 2019. 66: p. 15-22.

11.         Chronic Pain Australia, National Pain Survey 2018. https://www.nationalpainweek.org.au/images/documents/Surveys/National-Pain-Survey-2018-.pdf.

12.         Chronic Pain Australia, National Pain Survey 2019. https://www.nationalpainweek.org.au/images/documents/Surveys/National_Pain_Survey_2019.pdf.

13.         Upshur, C.C., G. Bacigalupe, and R. Luckmann, "They don't want anything to do with you": patient views of primary care management of chronic pain. Pain Med, 2010. 11(12): p. 1791-8.