By Ruth Hill
People suffering from chronic pain - including children and teenagers - are missing out on treatment due to the lack of services in many regions, putting their recovery at risk.
Specialists argue that investment in this area would save the country billions of dollars in lost productivity and wasted health spending.
Ella Dixon was just 13 when she strained her Achilles tendon playing rugby and ended up at Southland Hospital emergency department with a swollen, blue foot that was cold to the touch, but felt like it was "on fire".
After ruling out a blood clot, doctors did some online research, which suggested she could have Complex Regional Pain Syndrome (CRPS) and sent her home.
That was the start of four years of hell for the Invercargill teenager, who was unable to go to school for months at a time, socialise, or even walk unaided.
"I was in ED so regularly that I got admitted to the paediatric ward at Southland Hospital for a couple of months until I got transferred up to Starship, because it was too hard to manage down at Southland and they wanted proper input from a specialist in-patient unit."
Her mother Megan Dixon switched to working part-time to help care for her daughter.
"You feel pretty helpless, your life revolves around the pain," she told RNZ.
"She quite quickly ended up in a wheelchair because the pain was so extreme, she couldn't even tolerate wind on her foot, or bumps in the car."
At one point, Ella developed paralysis in her arm and right leg, which was diagnosed as functional neurological disorder.
Recovery has taken years, and involved a multi-disciplinary team of doctors, physiotherapists, occupational therapists, psychologists and others.
Ella, now 19, suffered a CRPS flare-up this year, triggered by appendicitis - and found adult services much less co-ordinated.
There is a doctor at Southland Hospital who treats acute pain problems, but not chronic pain conditions, the family was told, so patients have to travel.
Ella's referral to the Dunedin Pain Service was rejected because she was under ACC.
She now has an excellent specialist in Christchurch - but laments the fact there is no local inpatient service with a multidisciplinary team.
"The longer you have to wait, I found the worse the pain got, and the more issues that developed and the harder it is to treat."
According to the Pain Society, one in five New Zealanders suffer persistent pain and for an estimated 300,000 people, it is bad enough to be disabling.
President elect Karen Joseph said fewer than one percent of those people were getting specialist treatment.
"International evidence is that if you invest in pain services, this actually reduces the use of health services overall, particularly on the emergency department. So this would free up those beds for people who need them."
New Zealand should have at least 54 full-time specialist pain medicine physicians - or one per 100,000 population.
There are 38 registered, but a survey by the Pain Society in April found a 75 percent shortfall, with the equivalent of just 13.8 full-time specialists working in either the public or private sectors.
Some regions - including Gisborne, Whanganui, Palmerston North, Nelson and the West Coast - have none.
Dr Joseph, who is a gynaecologist as well as a pain specialist, said many of her pain physician colleagues (who included anaesthetists, psychiatrists and other specialists) were opting to work in other areas of medicine.
"Many of the pain services are either under-resourced or in places non-existent. Trying to deliver good care in a system that's so under-resourced, it's really hard to find satisfaction in that.
"For some of my colleagues, it's tempting to say 'This is too hard'."
Health New Zealand interim national chief medical officer Dr Nick Baker said all regions had pain management services in place, which supported both adults and children.
"There are many ways to offer excellent care. Pain management services are available in districts where dedicated pain specialists are not available.
"Pain management services are delivered in a variety of ways across the country, including a clinic/outpatient and community-based format, and while most areas have their own service, they may also be delivered through regional relationships or by referral to other sites."
Services were supported by multidisciplinary teams, including doctors, nurses, clinical psychologists, occupational therapists and physiotherapists, he said.
However, specialist pain physicians dispute that.
Paediatric pain specialist Paul Vroegop said recent New Zealand research has found 23 percent of young people aged 12 to 17 reported chronic pain for six months or longer, with 3 percent suffering severe and frequent pain.
Most of those were not getting any specialist care.
"I work in Counties Manukau and I work in Northland so it's obvious to me every day that there are huge inequities in resource available, even just 10km up the road."
In 2022, a specialist working group produced a proposed National Model of Care for chronic pain services, at the request of the Health MInistry involving four hubs, and nation-wide provider networks.
Te Whatu Ora said work on the Mamaenga Roa model of care was still in the early stages "with the initial focus on access to care".
A spokesperson said there was work to do in diversifying and growing the health workforce and this would need a co-ordinated effort across recruitment, training, retention and how they work.
Meanwhile, Ella Dixon is in her first year of a nursing degree.
She is keen to raise awareness of CRPS and chronic pain conditions, not just among the public but also within the health system.
"Because it's not something like a fractured bone that you can see on a scan, they're not so understanding of it."
