Kerry Hodgson slowly flips through a photo album of her travels through Thailand, Papua New Guinea and Indonesia with her husband Peter.
The pictures are proof she was there, but she remembers none of it.
She blames the 307 electroconvulsive therapy (ECT) shocks she had over 10 years to treat severe depression for wiping out nearly two decades of memories.
For Hodgson, the consequences are devastating.
“I don’t remember getting married to Peter. I don’t remember having my kids.”
The doctors reassured her the memories would return, that any impairment would only be temporary, she says.
It’s been 20 years since her last ECT procedure, though, and the memories have never come back.
“I don’t remember my dad dying. I don’t remember my elder son’s wedding.”
Her fingers hover over a picture of her smiling proudly next to her son at his graduation.
“I don’t even remember going to that,” she says, “I’ve got this photo but it doesn’t ring a bell.”
For Hodgson, life is made up of memory.
“If you don’t have memory you don’t have life. So that part of my life is dead.”
Worse still, she wonders if it was all for nothing.
In 2004, completely by chance, doctors found and then removed a rare tumour called a colloid cyst from Hodgson’s brain.
Depression is a crucial symptom of this type of tumour and once the cyst was gone, the depression disappeared too.
It’s never returned since, but in its place a huge question lingers: did Kerry Hodgson ever need ECT at all?
Kerry Hodgson blames hundreds of ECT procedures for erasing memories of major milestones in her life. Photo: RNZ / Cole Eastham-Farrelly
Between 200 to 300 people a year in Aotearoa have ECT, which is a relatively simple and painless procedure.
A short-acting anaesthetic and muscle relaxant is administered before an electric pulse is passed through the brain inducing a 20 to 30 second seizure. The patient is awake minutes later. A typical course of ECT is 8 to 12 procedures with one given every few days.
It’s still a mystery how and why ECT works, but it does. For patients with severe depression who are suicidal, it can give immediate relief instead of waiting weeks for medication to kick in.
The Royal Australian and New Zealand College of Psychiatrists says ECT is a life-saving, evidence-based treatment and permanent memory loss is “extremely rare.”
The procedure is controversial, however.
There is increasing debate internationally over its efficacy and safety, amid a slew of court cases in the US and Canada from patients who claim they’ve suffered memory loss and brain damage.
University College of East London clinical psychology professor John Read, who researches ECT, believes there should be a global ban on the procedure until robust research into its safety and efficacy is carried out.
“The problem here is that 90 years after it was introduced we don’t know whether it's effective because there have not been any placebo controlled trials since 1985, which is astonishing.”
While there is no consensus on how many ECT procedures is too many for one person to undergo, he says the 307 shocks given to Hodgson is “extraordinarily unusual”.
“Why keep giving a treatment if it doesn’t work? The chances of permanent brain damage after 307 ECTs is extraordinarily high,” he claims.
Kerry Hodgson and her husband Peter Photo: RNZ / Cole Eastham-Farrelly
Stacks of medical notes and reports cover the Hodgsons' dining room table.
There are more piles of paperwork on the floor and even more boxfuls in the garage.
The thousands of pages of clinical notes and reports document Hodgson’s time in and out of North Shore Hospital where she was under the care of several psychiatrists employed by what was then Waitemata District Health Board (now Health New Zealand Te Whatu Ora).
She first became unwell in 1993 with stomach problems. When her doctors couldn’t find anything physically wrong, they referred her to mental health services, where she received numerous diagnoses including anorexia, a personality disorder and, finally, major depressive disorder.
Medication didn’t work and Hodgson became suicidal. She had her first course of ECT at North Shore Hospital’s Taharoto acute mental health service in March 1994.
It helped her mood, but it didn't last, so she had more. The same pattern repeated over the next decade. She was often suicidal and was committed multiple times as a compulsory patient under the Mental Health Act, as well as being treated on a voluntary basis.
Among the piles of paper on Hodgson's dining room table are the many electroencephalograms, or EEGs, recording Kerry’s brain activity during each of her ECT shocks.
A print out from one of Kerry Hodgson's many ECT treatments. Electroencephalograms, or EEGs, recorded her brain activity during each treatment. Photo: RNZ / Cole Eastham-Farrelly
The bilateral ECT (the electrical pulse given on both sides of the head) induced seizures in Hodgson lasting anywhere from 19 to 33 seconds. Bilateral ECT runs a higher risk of permanent memory loss, research shows.
Over time, the shocks became more powerful. Sometimes they failed to induce a seizure so the treatment was repeated.
On average, an ECT patient receives 10 procedures a year, but in 2000, Kerry had 56. In 2003, she had 71 treatments, and a further 67 in 2004.
Between September 20, 2002 until her last ECT shock on September 29, 2004, there were only three weeks during which she did not undergo a procedure.
Why did she need so many, and was it safe?
“It was never really explained,” says Hodgson.
Neither Hodgson nor her husband Peter realised just how many ECT procedures she’d had until they requested her medical records from the DHB years later.
“We were just going along with it and weren’t thinking about how many she’d had,” Peter Hodgson says.
He wonders now why none of the medical staff overseeing her treatment during that period, including consultant psychiatrists, junior doctors, anaesthetists or nurses ever raised a red flag.
“They would have seen her coming every second or third day for months, and no one ever questioned it.”
RNZ put questions to Health NZ regarding Hodgson’s care under the former Waitematā DHB several weeks ago, but it was unable to respond before deadline.
“Health NZ is in the process of manually collating Ms H’s patient records and files which is taking considerable time. The information spans a number of years and is located in a number of locations, and then must be reviewed by clinicians. We are unable to comment further until we have all of Ms H's information to hand.”
Peter Hodgson at the couple's Waiuku home. Photo: RNZ / Cole Eastham-Farrelly
Peter remembers his wife “walking around like a zombie” after ECT and becoming increasingly forgetful about important events in her past.
Severe depression can itself affect the formation of new memories, but Hodgson became increasingly concerned about the impact ECT was having on her.
In May 2000, a doctor recorded her primary complaint was the severe memory loss she was having.
A month later in a session with a clinical psychologist she indicated she only had “islands of memory” and could not not recall her son’s graduation. Again, her doctor reassured her any memory loss brought on by ECT would only be for the treatment period and “not significant.”
In September and October 2000 she again expressed “extreme concern” at the memory loss associated with her ongoing ECT treatment and the anaesthetics she believed were contributing to her weariness. Her doctor noted her short-term memory was significantly impaired.
Despite the ongoing ECT, her depression worsened.
In February 2004, her psychiatrist noted Hodgson’s angry outbursts were also leaving her feeling embarrassed.
“This suggested some frontal lobe dysfunction, and does make me concerned about continuing ECT much longer,” he wrote. Still, the ECT continued.
Photo: RNZ / Cole Eastham-Farrelly
Hodgson doesn’t believe she was ever fully informed of the risks of so many ECT treatments.
It’s been known that ECT may cause long-term memory loss since the 1950s, yet the first consent form Hodgson signed in March 1994 - which is required by law - never mentions it.
It says: “The nature and effects of the treatment have been fully explained to me. This may consist of memory impairment for events immediately preceding and following the procedure and some limited memory impairment for a few days after cessation of the treatment.”
It was not until four years later during a session with a clinical psychologist that she says she was told about the risk. The psychologist noted she found his assertions about possible permanent brain damage arising from ECT “understandably disturbing”.
Hodgson signed dozens of ECT consent forms over the years but only two of them - in September and November 2001 - state long-term memory loss is a risk.
The remainder cite “memory disturbances”, “headaches” or “anaesthetic risks”, and a handful don’t list the risks at all - just a note from the administering doctor that any risks will be discussed with Hodgson “treatment by treatment.”
Peter, who accompanied Hodgson to all her out-patient ECT treatments, says the consent forms were “so simple.”
“They might write down that you’d get a headache or something. There’s not a long explanation of what the real risks are.”
Hodgson was also given ECT as a compulsory patient under the Mental Health Act multiple times, even when she was unable, or unwilling, to give her consent.
Sometimes she felt coerced to sign consent forms, she says.
“I don’t remember much, but going by what Peter said, they’d tell me ‘We’ll just commit you if you don’t do it voluntarily’. So you have no choice.”
The ultimatums were recorded in her clinical notes. In April 2000, she was again in hospital but did not want to be there.
“She continues to not want this. Was told committal [would] be necessary unless agreed. K angry, considering this ‘blackmail’,” a nurse writes on her chart.
Months later, she again wanted to leave hospital but nursing staff told her they could apply under Section 111 of the Mental Health Act to make her a compulsory patient.
Human rights lawyer Tony Ellis, who looked into Kerry’s case a few years ago before he retired, believes the potential coercion and failure to properly disclose the risks shows she did not give her informed consent to all the procedures.
“The consent forms did not disclose the full extent of the known side effects, particularly the risk of long-term memory loss or brain damage, so it’s quite fair to say she wasn’t fully consenting.”
He believes there may even be a case for Hodgson to pursue under the New Zealand Bill of Rights Act, on the basis the ECT she underwent amounts to torture or cruel and degrading treatment or punishment.
Photo: RNZ / Cole Eastham-Farrelly
There’s lots Hodgson doesn’t remember from that time. But there’s one thing she does remember quite clearly.
“I do remember when they [the doctors] told me I had clinical depression. I do remember saying to them: ‘No, it’s something physical’.”
Her medical records show she repeatedly raised concerns that she had a “big black hole” in her head.”
Despite her complaints, no one ever thought to literally look inside her head.
“They just said that it was the depression.”
It was only by accident they discovered the brain tumour.
In early August 2004, after 10 years of ECT, Hodgson suffered an allergic reaction and her lips and tongue became swollen. She was rushed to hospital where her head was scanned.
Doctors at Waikato Hospital were not sure what was causing the reaction, but they discovered she had a rare kind of tumour, a colloid cyst, in the middle of her brain.
While extremely difficult to diagnose on symptoms alone, one of the main symptoms of this kind of cyst is depression.
When the cyst was removed a few months later, Hodgson’s depression completely disappeared. She has not experienced it since.
Sitting in her living room overlooking the fertile plains of the Waikato River, Hodgson is softly spoken as she explains what it was like to realise she may have never needed all that ECT in the first place.
“This made me very angry. Because it ruined our lives.”
Her decade of depression, ECT and subsequent memory loss upended her family’s life, she says.
She was so unwell and required near constant care during that time that Peter quit his successful career to look after her, putting the couple’s financial plans on the backburner.
“We had plans to retire to the south of France you know…and here we are in the backblocks of Waiuku,” she says with a little laugh.
After the tumour diagnosis, Hodgson made an ACC claim for the delayed diagnosis of the cyst and the memory loss resulting from the 10 years of unnecessary ECT.
ACC has covered her postoperative stroke, but declined her other claims in 2006 saying it could not find any evidence the symptoms caused by the cyst were overlooked.
Her claim for the ECT was also declined because ACC determined memory loss “was an ordinary consequence of this treatment.”
After the operation, the couple considered making a Health and Disability Tribunal (HDT) complaint but found the process too difficult and lengthy. They considered legal action but their plans were put on the backburner after a business they’d invested in went under during the 2008 financial crisis and they were made bankrupt.
When they got back on their feet again, they tried to lay a police complaint against the DHB in 2019 but were referred instead back to the HDT.
Hodgson submitted written evidence to the Abuse in Care Inquiry in the hope it might provide some answers or accountability, but she never heard back, she says.
The couple engaged Ellis to take legal action against the DHB in 2019 but it was scuppered by the pandemic, a pile up of civil court cases to be heard and the fact many of the doctors who looked after Kerry had since died or can no longer be found.
Hodgson, now 74, says she would still like to consider legal action but the couple no longer has the funds to pursue it.
“We still feel upset about it because some of the doctors are still practising and they’ve never been taken to account.”
Photo: RNZ / Cole Eastham-Farrelly
ECT will one day be viewed in the same light as a lobotomy, says Read.
“We look back on lobotomies and say that was madness. I believe in 10 years time we will look back on this and say ‘what on earth are we doing?’”
ECT is neither safe nor effective, says Read, who has previously worked as clinical psychologist at Auckland Hospital and as a researcher at the University of Auckland.
His 2020 meta-analysis of ECT research found the 11 placebo controlled studies conducted pre-1985 were small and flawed, and there was no evidence ECT is better than a placebo beyond the end of treatment.
Long-term memory loss is also not as rare as people are led to believe, he says.
“We don’t know the exact figure because the research is very bad, but somewhere between 12 and 55 percent of people will get permanent memory loss.”
The 12 percent figure comes from studies conducted by psychiatrists while the 55 percent figure came from asking patients.
He says ECT is effective in lifting someone’s mood, but often only temporarily, largely due to the placebo effect but also due to the impact the procedure itself has on the brain.
“As they come out of that there’s this euphoria you get from any mild brain trauma. This is misinterpreted by the doctors, and sometimes the patients, as a lift in mood.
“To be fair, people say it makes them feel better. The problem is, it doesn’t last.”
Read’s research has also found information given to ECT patients in the UK did not outline the “limited nature of ECT’s benefits” and minimised risks of memory loss and death.
Read is not popular among some psychiatrists and has faced criticism that his research is based on “selective and poor quality assessments” of the evidence.
But there is consensus on both sides of the ECT debate that there needs to be more research.
Highlighting just how sensitive the issue is, none of RANZCP’s ECT experts would be interviewed about the procedure in Aotearoa, citing concerns about how it is portrayed in the media.
Read’s comparisons of ECT to outdated practices like lobotomies are “misleading,” it says in a statement.
“ECT remains a vital, evidence-backed treatment in modern psychiatry.
“We encourage people to seek accurate information from medical professionals.
“While some individuals can experience temporary memory impairment, it is important to remember that permanent memory loss is extremely rare.
“While community concerns about the safety and efficacy of ECT are understandable given the stigma surrounding the treatment, strong evidence supports ECT as an effective and often life-saving treatment for individuals with severe, treatment-resistant psychiatric illnesses such as depression.
“Our clinical guidelines and emerging evidence continuously inform and improve the practices of our members, as patient care and safety are our topmost priority.
“Monitoring outcomes and side effects of any treatment is an essential practice in modern ECT, and we support ongoing research to improve the safety and effectiveness of ECT.”
Photo: RNZ
While psychiatrists are reluctant to talk about ECT, Emily* says the treatment saved her life.
The first time she had it was in 2006 to treat her schizophrenia. She had 12 rounds, but it didn’t work.
“I was very very unwell, really psychotic. I wanted to give it a go because I hadn’t tried it before. I was pretty desperate for things to work.
“I was definitely warned of the risks of memory loss. I didn’t have any memory loss but I had a minor headache afterwards and drowsiness. They monitored me really closely afterwards, they were wonderful.”
She was offered ECT again in 2014 after becoming severely depressed and was admitted to hospital as a compulsory patient. She says her psychiatrist decided not to go ahead with the procedure in the end because she could not give her consent.
Emily had ECT again in 2020 after becoming catatonic.
“Over the course of a week I stopped moving, I stopped eating, I stopped drinking. I was really unwell. In the end I got so dehydrated and undernourished they were really concerned about me.”
Medication didn’t work so they decided to try ECT. Emily was under the Mental Health Act again but this time didn’t give her consent because she was unable to. The decision was made by her family and psychiatrists.
She doesn’t remember much about having the ECT. “But within a couple of hours I was a different person. I only needed one treatment.”
She believes it was the only option to treat her catatonia.
A print out from one of Kerry Hodgson's ECT treatments. Photo: RNZ / Cole Eastham-Farrelly
Emily says she was made fully aware of the risks of permanent memory loss, but is this the norm?
An ECT information booklet provided to patients, written by the Ministry of Health, says memory loss “may occur”.
“The memories most affected by ECT are retrograde memories, you may not remember some event in the period leading up to your depression.
“Memories about events more than two years old usually do not change. Therefore even if you do experience memory loss, you usually keep your memories from childhood and your memories from adulthood prior to the period leading up to your depression.”
In 2018, following a legal battle in the US, the ECT machine manufacturer Somatics admitted its ‘Thymatron IV’ - which is used by many hospitals in New Zealand - could cause permanent memory loss and brain damage.
The US Food and Drug Administration now requires US medical practices to have a warning on their Somatics machines regarding the cognitive side effects.
This is not a requirement in New Zealand and Health NZ confirms this warning “has generally not been put on local machines.”
“Patients are given a thorough explanation about possible side effects as part of the consenting process,” a statement says.
The warning has been included in the Thymatron’s user manual since 2019, but Medsafe, which regulates medical devices, was not aware of the warning until contacted by RNZ.
It has since issued a warning of its own to Somatics.
“Our expectation is that if a corrective action is conducted (in this case update of the user manual) due to an issue with a medical device, Medsafe should have been notified prior to the conducting of the corrective action,” emails between Medsafe and Somatics show.
RANZCP says all psychiatrists undergo mandatory ECT training to become a fellow and new professional practice guidelines written in 2019 state they must inform patients about the risks.
“Details should also be provided about the treatment methodology and process, any side-effects or possible adverse events, including the risk of transient anterograde and retrograde cognitive impairment and, less commonly, irreversible retrograde memory loss particularly if bitemporal (BT) techniques are utilised,” the guidelines say.
Health NZ says patients are provided “details and extensive information” about the common side effects and risks of ECT.
“This includes the risks associated with receiving a general anaesthetic, the risk of non-response, the risk of short-term memory impairment and longer-term memory impairment.”
But it’s left up to each hospital and doctor to declare these risks to patients. There is no standardised ECT consent form, as each hospital draws up its own.
RNZ asked Health NZ for copies of consent forms from every hospital that administers ECT.
It was unable to do so but provided forms from three former DHBs in the Auckland region: Counties Manukau, Waitematā and Auckland.
Counties Manukau is the only one to specifically state the risk of longer-term memory loss.
Auckland’s form confirms written information about ECT has been given to the patient and “the purpose, nature and possible complications have been explained to me.”
Waitematā’s form has remained largely unchanged from when Hodgson signed her consents, stating the risks have been explained to the patient and leaving a space for the doctor to write specific risks down.
Somatics machines are currently used in Counties Manukau and Waitematā.
Kerry and Peter Hodgson on their wedding day. Photo: RNZ / Cole Eastham-Farrelly
Hodgson hopes she will one day get answers to her questions about her own care and hopes people are being educated about all the risks.
“I know ECT has helped a lot of people. But I just want people to be fully aware of the pitfalls,” she says.
“Your 40s and 50s are supposed to be the best time of your life.
“I didn't have any 40s or 50s. It’s just lost.”
