Medical negligence victim speaks out
Revelations that four women had breasts removed when they did not have cancer has prompted a victim of one of New Zealand's worst cases of medical negligence to break her silence on the pain she lives with nearly 20 years on.
"Julie" said the hurt these women felt would "never completely go away".
She was a patient in a case that saw dozens wrongly diagnosed between 1989 and 1994 by then Whanganui pathologist James Burkinshaw.
A Ministry of Health report this month detailing the ordeal of five women who underwent major surgery because they were told they had cancer when they didn't, found the most painful part of the experience was the way they were treated by medical staff after the mistakes were uncovered.
Not many know that pain better than Julie.
More than 4000 cancer biopsies had to be retested in 1995 after it was found at least 54 were wrongly diagnosed by Burkinshaw between 1984 and 1994.
He resigned from Good Health Wanganui - the predecessor to Whanganui DHB - in 1994. Months after, the errors were found in his assessment of breast, prostate and cervical biopsies.
In September 1993 Julie was told by medical staff she had a "contained" carcinoma in situ in her cervix, and they would be able to remove it with a simple hysterectomy.
Three months later clinicians told her they had not gotten all of the cancer and convinced her she had to undergo internal radiotherapy.
Internal radiotherapy is where rods sealed with a radioactive substance are placed inside the cervix directly next to the cancer. It often means a patient is unable to move for up to 36 hours, and can cause significant damage.
Julie has had four operations related to that since, but what hurt her the most was doctors never told her she was put through that because her cancer was under-diagnosed in the first place.
She read about it seven months later, when the scandal involving other patients was finally reported in the media and she discovered she was part of that.
Julie said she placed her trust in the medical system and the negligence of one pathologist cost her her femininity, dignity and health. Despite this, she didn't blame him.
"The man was sick, he should never have been practicing, and if the cleaners in the hospital knew he was sick, how did the management not know?"
Burkinshaw died in the dementia ward of a Palmerston North retirement home, in 2000. He had Parkinson's disease while he was still practicing and it is now thought he was also in the early stages of dementia.
Julie said the hospital's attitude at the time meant she was deprived of her options. The internal rod therapy left her with severe and "embarrassing" bladder problems, and unable to work.
"You make a mistake, you admit you've made it - 'what are we going to do about it'. And you sit down and work it out - I think most people could handle that.
"You finally get to see someone and ask them questions... [to get told] "you're alive, you're still here, What are you moaning about?'"
Julie said her heart went out to the women and their families in the latest report.
Five women who never had cancer and never needed invasive surgery but they still had to go through the ordeal of being told they were gravely ill.
In addition to the four mastectomies, one woman had surgery to her face, as part of a partial maxillectomy which involved a bone graft in May last year.
All of the women involved not only suffered physically and emotionally but all felt their cases were dismissed by clinical staff as unimportant.
Ministry of Health chief medical officer of health Don Mackie said while it wasn't there yet, the culture was shifting.
"One of the main messages from this report is hearing the effects these errors in the labs had on the women, and we're learning we can do things better for people who have been harmed by laboratory errors and we need to act on that."
He said it started with the issue of communication.
"When something has gone wrong and it's been identified, we need to be open with people, we need to apologise for that, we need to acknowledge that something has happened and we need to start explaining what we're going to do about it."
At Wanganui Hospital, major policies have now been put in place in the wake of Burkinshaw's mistakes and the DHB's director of nursing, Sandy Blake, is also a World Health Organisation advocate for patient safety.
"It's something we take very seriously, if a mistake is made," Blake said.
"It is vitally important to tell them straight up front. There has to be full and open discussion with patients and their family.
"We absolutely encourage them to ask as many questions as they need and welcome them to take any issues further if they aren't happy."
Dr David Perez, Associate Professor at Otago University's faculty of medicine, said students were being taught how to carry out "patient-centred" care.
"It has an impact on psychological and emotional outcomes. Most patients want to know they are also being listened to by their doctor and appreciate a collaborative approach.