This week, I spoke to ABC news about an issue that I know is impacting many people living with pain: rapidly diminishing options for pain management.
This year has presented more challenges than most, but for the 3.37 million people living with chronic pain, things have been even more problematic. The 1 June opioid reforms have created access problems throughout the health system, with consumers left bearing the brunt.
At Painaustralia, we have heard from hundreds of consumers about the issues they are facing and the frustrations that come along with them, and our colleagues at Chronic Pain Australia and Australian Pain Management Association have seen similar spikes in calls and emails. We always recommend that people look for best practice multidisciplinary supports or pain specialists however, waiting lines across the board for public clinics have blown out.
So what about the most vulnerable within this group? What about those that cannot pick up the phone and complain? What about children?
In Australia, the exact number of children living with chronic pain is hard to determine, as the Australian Health Survey (AHS) does not include data on chronic pain in children. Prevalence reports, like the Deloitte Access Economics Cost of Pain in Australia report, cannot include prevalence for younger cohorts despite the fact that there are a range of conditions that still cause chronic pain in children, for example, juvenile arthritis.
What we do know is that the number of children across Australia who experience chronic pain face growing and clinically concerning wait times to access specialist interdisciplinary services. Paediatric pain services are limited to seven public clinics across Australia.
In NSW for instance, there are only three public paediatric pain services – two are part of the Sydney Children's Hospitals Network (SCHN) located at Westmead and Randwick, with only one outside Sydney, in Newcastle. Each children’s' service has a large catchment i.e. the Western, Southern and Northern Child Health Networks respectively.
The youth population and demand have grown steadily over the last five years and burgeoned in the last 12 months. By comparison, sector funding in NSW has been static since 2012. As a member of the NSW Agency of Clinical Innovation Executive committee, Painaustralia knows that these services have tried, within the constraints of their limited resources, to increase capacity and reach by leveraging HealthPathways, telehealth and other technologies and increasing team efficiency. The consensus is that they cannot increase the rate of intake further without negatively impacting the care offered to each child and family.
There are also extraordinary barriers that must be crossed before children can make it to a public paediatric pain clinic waiting list. The burden of pain in the community is always higher in areas that require more resources: rural, remote, socioeconomically disadvantaged, and Indigenous communities. The data also shows that the rate of primary care recognition is very low.
The latest mid-year electronic Persistent Pain Outcomes Collaboration (ePPOC) report for NSW shows that 65 per cent of children experienced pain for more than 12 months before they were referred to a specialist service. The complexity of these cases is another challenge – higher complexity requires longer engagement and fewer discharges.
In this situation, children will inevitably wait in pain and continue to miss out on critical educational and developmental opportunities for unacceptable periods of time. Some children deteriorate while waiting and their carer’s work capacity is significantly impaired (by 40 per cent on average) as evidenced by ePPOC.
Children in regional, rural and remote areas who are already disproportionately overrepresented in this cohort will again be hardest hit. Those who live in the most socioeconomically disadvantaged areas will be further disadvantaged because they are the ones waiting to attend the part-time non-Sydney service (with the longest wait-time).
Across the board, we cannot continue to ignore this situation. We know that the National Strategic Action Plan for Pain Management will soon be considered out-of-session by state and territory health ministers. The Action Plan outlines many important initiatives that can enhance the provision of interdisciplinary care across Australia. More importantly, it also outlines initiatives that are preventative, and can help reduce the onset of chronic pain in children.
These include action items that focus on the development of education programs and resources for schools. For example, building on the findings of the Hunter New England Population Health Children Initiative which is conducting consultations to define the best approach for integrating pain education in the school setting.
This situation needs an urgent solution. Waiting in pain is not an option for most people, and it certainly shouldn’t be the case for children living with complex chronic pain at a critical time in their development.
Carol Bennett CEO
Case Study: ‘Talia, a 15-year-old non-Indigenous girl, is living with her single mum in a disadvantaged outer-regional area. Talia was referred by a gynaecologist for non-gynaecological groin pain with complex social situation. Talia had been reporting chronic pain across the board for over a year – chronic headache, tailbone, hip and back pain from an assault, widespread ‘muscle soreness’.
Living with chronic pain has had a major impact on Talia, with school absences for most of the previous year, plus frequent emergency department presentations.
While Talia was graded as a Category 1 case, the long wait time to access support meant that she deteriorated rapidly, just in the space of six weeks while waiting for the first available appointment with the service.
Figure 1 Talia's pain scores before pain clinic intervention
Deterioration happened on several fronts including worse average pain, school attendance, physical quality of life, more severe physical disability, and pain-related worries.
However, once Talia was able to access the pain clinic and completed her treatment, she was pain free much of the time, back to 80 per cent school attendance and even started playing volleyball.
Figure 2Talia's improved outcomes post pain clinic intervention