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“I was told by specialists and doctors to apply for disability support after herniating 5 discs in my lower back resulting in nerve impingement. That was back in 2010. Since then I have developed polymyalgia and fibromyalgia as well as all the wonderful different pains they mimic. I also have osteo arthritis in my right knee. I have been on cocktails upon cocktails of drugs. I also got diagnosed in 2017 with COPD. I cover the cost of all of this, so I have had to pull my super. Had no problem getting approved for that. Total disability. I just don't understand that my super being government owned can pay me that but not the DSP. I have been rejected 4 times and I have been waiting for a response as I appealed it. 5 months on I'm still waiting.”

• Consumer living with chronic pain

Back in July, Painaustralia put out a call for input, as yet another Royal Commission was launched, and another sector is rocked by the decline in trust in our once sacred institutions. This Royal Commission will examine the violence, abuse, neglect and exploitation of people living with a disability.

We were overwhelmed by the response from the chronic pain community. Hundreds of people shared their experiences, and unfortunately many painted a bleak picture of a system that has failed on so many levels.

Consumers have told us of the immense stigma that they have faced, and the toll it takes living with the ‘invisible’ disability of chronic pain. What has become painfully clear is that if their condition cannot be explained in the typical framework of biomedicine or physical functional disability, people with chronic pain can find their personal legitimacy being compromised, and they can experience barriers to accessing income support, health care and other support services.

If grappling with the diagnosis and challenges that chronic pain brings isn’t hard enough, our welfare and support systems ensure that people living with these painful conditions are further compromised by an inflexible and rigid system. At a time when we must be doing our best to provide early intervention and support so that people can learn to self-manage their condition and ideally avoid ongoing chronic pain conditions - we do the opposite. We question their symptoms, whether their condition is ‘disabling enough’, we push them down a labyrinth of assessments, which places unnecessary pressure and a psychological toll on the individual. Worse yet, we stigmatise them and force them to demonstrate their disability.

Many consumers have been forced to leave employment as a result of their chronic pain condition, yet find themselves back on a Newstart allowance, and the necessitated requirement to keep looking for employment! The extended difficulties of accessing expensive pain treatments and being able to ‘prove’ eligibility for DSP and NDIS services, creates a vicious cycle.

Painaustralia’s submission to the Royal Commission is focussed on ensuring that this system can be fixed. We recommend:

• the prioritisation of chronic pain in health and disability policy, and access to pain management services and support be addressed.
• the adoption of a clear definition of chronic pain, consistent with the new World Health Organisation classifications (ICD-11), ensuring that our health and disability systems can easily diagnose, classify and provide appropriate supports and services for people living with chronic pain.
• that people living with a disability as a result of their chronic pain are assessed effectively and provided access to services that adequately meet their needs.

Pain has a devastating impact on over 3 million individuals, their families and society as whole. Addressing the significant disability burden caused by pain involves providing people living with chronic pain and related disability with the right supports, at the right time.

Our disability system providing the right supports and services, can significantly improve the lives of people living with pain, their families and their communities. Ultimately, we will all benefit if people living with these debilitating conditions can access supports and services at the earliest stages of their condition.

Carol Bennett, CEO