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Waiting in pain: new tool will help navigate an inadequate system

A new interactive directory, available now via the Painaustralia website, will help people with chronic pain to find quality services in their area, but it will take a system-wide refocus to ease the burden for the millions of Australians in this situation, writes Painaustralia CEO, Carol Bennett, below.


Carol Bennett writes:

The reality for 3.24 million Australians living with chronic and persistent pain conditions can be confronting.  Pain underpins much of the burden of disease across the chronic disease spectrum, especially in areas like mental health, depression and suicide.

It’s a complex condition that cuts across the silos of health and extends well beyond into other sectors of society.

The heavy toll of chronic pain

At Painaustralia it is Nick Nguyen, our exceptionally talented and creative designer and office manager, who answers most of our phone calls.  Nick lives with chronic pain himself and sometimes finds it hard to get to work.

Some of the calls Nick takes are difficult.  People can be in so much pain that they become highly distressed and desperate.  Many of these calls are from people who have tried a multitude of treatments, been dismissed, pushed from pillar to post, and often left to languish on more accessible and cheaper opioid medications not usually recommended for chronic pain conditions requiring long term treatment.

Often these callers talk of their broken lives – their incapacity to work, to function, to be part of their families and communities, to live well.

The high level of out of pocket costs to access essential treatments can break people.

In 2018, $12.2 billion was spent on health care services associated with chronic pain in Australia. Governments paid $7.9 billion, or 66.7 percent, and Australians living with chronic pain paid $2.7 billion, or 22.1 percent of the total amount, in out‑of‑pocket costs.

People living with chronic pain can be some of the most marginalised in society.

Finding support – a new directory

Nick has always been willing to listen, to acknowledge, to understand and care, and help people find a pathway to better treatment.  Sometimes these phone calls leave him drained.

We know that providing good support to people at the earliest possible stage of their chronic pain journey is one of the keys to achieving better outcomes.

But good support can be hard to find.  It can be very difficult for people to navigate complex health systems and to know which services provide quality and evidence-informed care.

A few months ago, after having spent countless hours talking to people in pain, Nick began pushing for an interactive National Pain Services Directory that would enable people to find quality services in their area.

Nick spent many hours designing, and together with our clinical director Dr Malcolm Hogg, fact checking and validating the available data which was initially drawn from information provided by the Australian Pain Society.

Ultimately, this data set became Painaustralia’s new National Pain Services Directory, an interactive mapping of over 200 specialist treatment services.

The entire project was borne out of our interactions with people experiencing pain.  It seeks to help answer the most common question Nick deals with when answering our phones: ‘where do I go to get good treatment for my pain?’

The human costs of waiting in pain

Painaustralia’s new National Pain Services Directory is a start towards shortening the journey of many people as they seek out treatment that will work for them, but it is not the solution.

People with chronic pain typically face long waiting times to access public services located in public hospitals, with waitlists well over 2 years in some areas.

Data from the Waiting in Pain Report (2012) demonstrated that chronic pain management services were unable to meet service requirements adequately, and that waiting times were more prolonged for publicly funded than privately funded services. The variation in standard and range of providers, as well as duration and access to allied health, was pronounced.

In practice, the main treatment for pain in Australia is opioids.  One in five GP presentations concerns chronic pain.  Medications are prescribed in 70% of cases despite medication not being best practice for long term management.

This has led to a 30 per cent increase in opioid prescribing between 2009 and 2014.  It’s little wonder we have seen a huge spike in the harms and deaths (now averaging 3 per day in Australia) as a result of opioid medications.

The highest rates of prescribing to manage pain are experienced in rural areas, together with the lowest rates of referral to another health professional.

The Australian Commission on Safety and Quality in Health Care revealed opioid medications were being prescribed in some regional areas at 10 times the rate of other areas and they recommended proactive action on pain and opioid management in rural areas.

Prioritising pain management

Best practice pain management is about multi-disciplinary care, treating the biological, social and psychological aspects of each individual’s pain.

A directory may provide useful information, but it will not provide additional treatment options.

Prescribing our way out of pain will only make things worse.

Unless we do things differently, millions of Australians will continue to experience unacceptable levels of pain and suffering.

Like Nick, we all feel for people waiting in pain.  Nick saw an opportunity to help and did.  Now we need our politicians and policy makers to adopt the same approach.

Pain is not going away, but if we choose to prioritise the provision of better pain treatment, not only will we save lives, but millions of Australians will be able to live more fulfilling, productive and engaged lives.

*This resource was developed by Painaustralia with funding from the Australian Government Department of Health.  Special thanks to the Minister for Health, the Hon Greg Hunt MP for his support of this initiative. Find it here

Carol Bennett is the CEO of Painaustralia

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