“AKK played with my life”: a patient with chronic pain waits a long time for treatment

Ruth Hill

A woman who developed debilitating chronic pain after breaking her leg was caught between ACC and the public system, with neither taking responsibility for her rehabilitation.

Although the ACC has now accepted that Jacinta Byron’s condition was caused by her injury, she is disappointed that it took three years to receive a referral to a specialist pain management service.

She was a prominent art curator at the time and broke her heel in May 2021 after jumping from a bench onto a concrete floor.

However, the pain only got worse, and by the time the cast came off five weeks later, the entire foot was swollen and red.

This “foolish accident” triggered complex regional pain syndrome (CRPS), the most severe pain condition known to medicine.

“It got to the point where I was holding my leg in the air, I couldn’t touch it, no one could touch it, the fabric couldn’t touch it, I couldn’t put it on the pillow and I was crying in agony.”

The health system was overwhelmed by the Covid pandemic – this was just before the second national lockdown – and her recovery was complicated by two further fractures in the same foot. Taking strong painkillers affected her balance.

Byron had previously had a very good life: after a distinguished career in Italy and at the Victoria and Albert Museum in London, she returned to New Zealand to live in Arrowtown and work in private galleries.

She now survives on benefits, having exhausted her savings.

Typing messages on her phone tires her. She relies on crutches to get around and struggles with constant brain fog from her medications.

“I can’t lose this house, but I can’t get a job.

“I have spent all my savings that I had to save over the years to keep a roof over my head and now I don’t have the money to pay for treatment so I will have to go through ACC.”

Fight for help

By May 2023, desperate for help, Byron asked her GP to refer her through ACC to the Australis specialist pain clinic in Christchurch. But after hearing nothing for a couple of months, she responded and he admitted that he had forgotten to do so.

Her new therapist finally applied in October.

ACC requested her medical records in December and was told at the end of January she would make a decision within three months.

“And then, three months on the button, I’m waiting for a yes or no decision, but no, I get a message (in the form of a text message) saying, ‘Oh, we need your mental health records right now.’ And I thought: Oh my God. They had three months to request this information.”

Two days later she was admitted to Southland Hospital for emergency surgery and remained there for a month with serious post-operative complications.

She was referred to the Dunedin Pain Management Service by her regular doctor.

“Four weeks later they said, ‘Thanks for filling out the triage (forms), but we can’t see you because it’s an ACC matter.’

By then it was August. She returned to ACC.

“They told me that the three-month period had expired and I would have to apply again. I will need to go back to my GP, get another referral and wait another three months.”

Byron called ACC and, as she freely admits, “cried and ranted” to the caller who asked if she could put her on hold.

“She came back to me 10 minutes later and said, ‘OK, yes, we have found that you have CRPS as a result of the accident.’ And that was all that was needed!”

Unfortunately, her ordeal was not over.

After being assessed by an occupational therapist and a physical therapist, she was told that a treatment plan would be drawn up and submitted to ACC for approval within a week.

But six weeks later she had heard nothing and had no response to her messages to the rehab center – until RNZ began asking ACC about her case a couple of weeks ago.

Since then there has been a flurry of calls from the provider and ACC apologizing for the “slow response”.

ACC apologizes

In a written response to RNZ, ACC deputy chief executive (service delivery) Michael Frampton said the agency would “continue to support” Byron’s treatment.

“We have contacted Jacinta to apologize for the time it has taken us to process her application and to confirm that funding for the pain management program has now been approved.

“We understand the importance of timely treatment and always try to make decisions as quickly as possible. In this case, I am absolutely aware that we had opportunities to act more quickly, and I am sorry that this had an impact. was on her.”

Pain specialist Christopher Rumboll from the Australis Clinic says treating chronic pain requires a multidisciplinary approach, but both public and private systems are set up to provide “discrete interventions” such as drugs and surgery.

“It is difficult to provide appropriate, adequate service at the intensity and duration that patients typically require. And that has to do with how ACC structures its funding.”

When Byron was first diagnosed with CRPS, she was told it was best treated for six months and would be “almost hopeless” within two years. This was more than three years ago.

“CRPS is a very important thing. And I just feel like ACC is playing with my life like I mean nothing.

“Wrestling and jumping through hoops is so tiring and so demoralizing that sometimes I can’t do it. I just don’t have the strength.”

Byron has now been referred to the Australis clinic; waiting period is two and a half months.

ACC told her it was investigating the reason for the delays in her case.