Chronic pain patient endures long wait for treatment: 'ACC has been playing with my life'

Ruth Hill, Reporter
ruth.hill@rnz.co.nz

A woman who developed a debilitating chronic pain condition after breaking her foot has been stuck between ACC and the public system, with neither one taking responsibility for her rehabilitation.

While ACC has now accepted Jacinta Byron's condition was caused by her injury, she is frustrated that it has taken three years to get a referral to a specialist pain service.

A high-flying art curator at the time, she fractured her heel in May 2021 jumping off a bench onto a concrete floor.

However, the pain just got worse, and by the time the cast came off five weeks later, the whole foot was swollen and purple.

That "silly accident" had 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, a tissue couldn't touch it, I couldn't rest it on the pillow, and I was crying in agony."

The health system was in the grip of the Covid pandemic - it was just before the second nationwide lockdown - and her recovery was further complicated by two more fractures in the same foot. Her heavy-duty pain medication has affected her balance.

Byron used to have a very nice life- after a glamorous career in Italy and at the Victoria and Albert Museum in London, she returned to New Zealand to settle in Arrowtown and work for private galleries.

These days, she survives on a benefit, having exhausted her savings.

Tapping out a message on her phone exhausts her. She has to drag herself around on crutches, and fights constant brain fog from the medication.

"I can't lose this house, but I can't get a job.

"I used all my savings that I had to try to keep a roof over my head over the years, and I don't have money now to pay for treatment so I have to go through ACC."

Fighting to get help

By May 2023, desperate for help, Byron asked her GP to make a referral via ACC to the Australis Specialist Pain Clinic in Christchurch. But after hearing nothing for a couple of months, she followed up and he admitted he had forgotten to do so.

Her new GP eventually filed the application in October.

In December, ACC requested her medical notes, and in late January she was told she would have a decision within three months.

"And then three months on the button, I'm expecting a decision, either yes or no, but no, I get a message [via text] saying 'Oh, we need your mental health notes now'. And I thought, 'Oh my God. They've had three months to ask for this information'."

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

A doctor on staff referred her to the Dunedin Pain Service.

"Four weeks later they said, 'Thanks for filling out the triage [forms] but we can't see you because this is an ACC matter."

By then, it was August. She went back to ACC.

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

Byron rang ACC and - she freely admits - "sobbed and ranted" to the call-taker, who asked if she could put her on hold.

"She got back to me 10 minutes later and said 'OK, yep, we've accepted you've got CRPS as the result of the accident'. And that was all it took!"

Unfortunately, her ordeal was not over.

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

But six weeks on, she had heard nothing and had no response to her messages to the rehab provider - until a couple of weeks ago, when RNZ started asking ACC about her case.

Since then, there has been a flurry of calls from the provider and ACC, apologising for the "slow follow-up".

ACC apologises

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

"We've contacted Jacinta to apologise for the time it's taken us progress her claim, and to confirm that funding for the pain management programme has now been approved.

"We understand the importance of timely treatment and we always try to make decisions as soon as we can. In this case, I absolutely recognise that there were opportunities for us to have acted more quickly, and I'm sorry for the impact this has had on her."

Pain specialist Christopher Rumball from the Australis Clinic says treating chronic pain requires a multi-disciplinary approach - but both the public and private systems are set up to provide "discrete interventions", like drugs and surgery.

"It's difficult to provide an appropriate adequate service for the intensity and duration that patients typically need. And that's to do with the way ACC constructs its funding."

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

"CRPS is such a time crucial thing. And I just feel like ACC has been playing with my life like I mean nothing.

"Fighting and jumping through hoops is so exhausting and so demoralising, that some days I can't do it. I just don't have the strength."

Byron has now been referred to the Australis clinic; the wait time is two-and-a-half months.

ACC has told her it is investigating the cause of the delays in her case.