People in pain want to be believed

CHRONIC pain is daily pain that lasts longer than 3–6 months. One in five Australians live with chronic pain and many are disabled by it.

Chronic Pain Australia is the national voice of people living with chronic pain. Recently, through its 2018 National Pain Survey, over 1200 Australians living with chronic pain were asked what they needed from their health professionals, parliamentarians and the general community to help them manage their pain. This article reports the top themes emerging from that survey, using examples of the respondents’ own words to illustrate each theme.

One theme was the need for health professionals and governments to understand that mental health challenges and living with chronic pain go hand in hand:

“Increase the number of appointments available under a mental health plan to help me keep on top of the mental health issues associated with chronic pain, social isolation, and family breakdown” (Respondent no. 450)

Living with severe, poorly understood pain that is disbelieved, with scarce access to specialised care, can lead to despair, hopelessness and social isolation. Struggling to earn a living, losing important life roles, disrupted sleep, work and intimacy often mean that mental health and wellbeing suffers.

The majority of respondents to the 2018 National Pain Survey were female (83%), and the median age was 45 years.

People living with chronic pain want empathic, non-judgemental and well informed health professionals who want to listen and partner with them. They want validation that their pain is real, that their mental health is challenged by it and that resources for both pain and mental health are needed:

“Social isolation and mental health issues are at times just as debilitating as my actual pain, but there are not enough resources for either” (Respondent no. 235)

Pain is seen as mysterious by many who would ask their GP to:

“… help diagnose the problem. Mine has gone 3 years undiagnosed — having a name to it would allow me to understand it better” (Respondent no. 1215)

Over 75% of respondents indicated the urgent need to make medical cannabis available to people living with disabling chronic pain:

“Prescribe different pain relief, as after 5 years, the normal script medication isn’t as effective. Cannabis oil worked amazingly well for the very short period I tried it, but cost is prohibitive and supply chains less than credible …” (Respondent no. 1077)

However, Australian GPs struggle to prescribe medical cannabis, due to stringent federal government regulations:

“Legalise cannabis and make it easily available for chronic pain use as well as a variety of other health and psychological related problems” (Respondent no. 389)

With the majority of respondents (99%) indicating that they did not think the federal government was doing enough for people living with chronic pain, issues of financial access to strategies that work are central. As this woman living with severe pain for 20 years noted:

“I can only work casually for 16 hours a week, yet I was taken off the disability pension and put on Newstart. Therefore, I cannot continue a lot of my previous treatment, as I cannot afford it. I have lived with my mother for the past 20 years, as I cannot afford to pay rent to have my own place” (Respondent no. 25)

Access to the Disability Support Pension was a consistent theme. The invisibility of chronic pain leads to discrimination and stigma on top of financial hardship:

“It is a degrading process to apply for a disability pension with a diagnosis of chronic pain, as it is an ‘invisible illness’ [and] there is no ‘box’ that we fit into to apply, often resulting in rejection, more pain, suffering and poverty. Please have staff with the skills to assess the supporting documentation specific to the impact of chronic pain on the person’s ability or inability to work” (Respondent no. 567)

Currently, the federal government allows five allied health visits per calendar year for people living with chronic disease. Respondents feel that this is inadequate:

“Medicare does not cover gym membership and supervised programs … does not cover dietitians or massage ... Disability pensions do not cover the gap. Many of us are stuck ... [Chronic Disease Management] plans are not enough” (Respondent no. 204)

Earlier this year, the federal government restricted access to codeine in pharmacies, and there has been much public discussion about an “opioid crisis”. This has led to distress and stigma for people living with chronic pain. The federal government is cautioned to take care when demonising medicines:

“Stop demonising opioids. It’s hard enough to get to the chemist to get medication as it is, without having to see my GP for a script for something I used to buy over the counter” (Respondent no. 590)

“The federal government should be listening to us, the people living with chronic pain. I’m sick of being lumped with people who overdose on opioids, legal or otherwise. [Ninety-nine per cent] of us are being punished because of the actions of 1% of the population” (Respondent no. 982)

All health professionals including GPs, pharmacists, allied health and others were asked to be less judgemental of people in pain:

“Don’t judge a book by its cover — education — there needs to be more awareness about ‘invisible illness’” (Respondent no. 723)

It is clear from these results that people with chronic pain continue to struggle within systems that are promoting stigma, poverty and disability.

What can people in pain do for themselves to protect their mental and physical health and wellbeing?

Staying connected is crucial. Chronic Pain Australia runs a free 24/7 forum for people living with chronic pain. Here, people with pain are welcomed with values of compassion, non-judgement and understanding. Many forum participants indicate that they have avoided suicide because of the friendship and support they find on the forum. The Chronic Pain Australia website also has some top tips for free resources that people with chronic pain find helpful. For more information about the National Pain Survey 2018 results, which are made public today, visit the National Pain Week website.

Dr Coralie Wales is the president of Chronic Pain Australia.

 

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or MJA InSight unless that is so stated.

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