When help comes too late title image. Anna McConnell is in recovery after struggling for years with severe anxiety and panic attacks, which later spiralled into alcohol addiction.

CONTENT WARNING: This feature covers topics including severe mental distress, addiction, self-harm and suicide. Please take care while reading, and reach out to one of the contact numbers below if it triggers any distress.

From the moment she was pregnant, Emily* could not enjoy it. While she wanted the baby, she was convinced she would be unable to love and care for it. She couldn't stop picturing herself harming her child when it was born. The thoughts kept her in a constant state of terror and guilt, which made her worried about stress hormones harming her baby’s development. In her mind, the only way to end the agony and protect the baby was to terminate the pregnancy. But even as she took the pill to start the process, she felt it was the wrong choice. 

Emily had severe perinatal obsessive compulsive disorder (OCD). OCD usually conjures images of extreme tidiness, washing hands and flicking switches. This is only one form of the disorder. For people who live with what is known as “Pure O”, the compulsions are invisible. They are endless ruminations, intrusive thoughts and “what-ifs”. These people are extremely unlikely to act on their obsessions because they represent things they wish to avoid at all costs, but the condition can be debilitating. OCD is also very treatable, but access to specialist clinical psychologists - or any psychologist at all - is difficult.

Emily felt she could not talk about her intrusive thoughts with her friends and family. They were so excited about the baby, they would not understand. So, as soon as she learned she was pregnant, Emily, who had a history of childhood trauma, sexual abuse and mental health issues, sought help from the Southern District Health Board’s community mental health services and ACC. Both put her on waitlists to see a psychologist. In the meantime, Emily contacted half a dozen private therapists but was either turned down because her case was too complex, or put on another waitlist. It was now December 2020 and she was still waiting for help. She was 17 weeks’ pregnant. 

After her termination, she woke up from the general anesthesia and started crying. For three days, the tears would not stop. Her husband gently told her she needed to move on, so she stopped crying in front of her friends and family. Instead, she would drive to the beach, park up, and scream. “I was all over the place. I was heartbroken. I remember crying and saying: ‘I want my baby back.’”

A generic picture of a beach in Dunedin.

Emily drives to Dunedin’s beaches and bush when she feels down. JOHN KIRK-ANDERSON/STUFF

Emily drives to Dunedin’s beaches and bush when she feels down. JOHN KIRK-ANDERSON/STUFF

By that point, Emily had stopped working and was suicidal. She was still desperate for help. But the Southern DHB’s community mental health services told her there was a priority list to access a psychologist, ranked by need. Emily could not believe it.

I remember thinking: If I am not a priority - who the hell is? EMILY

Six months later, when she finally had an appointment with a psychologist, she was too unwell to engage. It was about the time she would have given birth and the grief overwhelmed her. “I remember turning up to therapy in hysterics saying: ‘I need to be admitted to hospital; I am not coping, I am not functioning.’” Between May and July this year, Emily was admitted to Dunedin Hospital’s mental health ward several times. Every time, the psychiatrist there would discharge her within 24 hours.

In July, she disclosed suicidal thoughts to police after reporting an altercation. Officers took her to Dunedin’s Emergency Psychiatric Services. Emily told the registrar she had detailed plans to end her life. She was admitted to the mental health ward overnight but discharged early in the morning. Emily says the psychiatrist who saw her did not give her time to talk about her suicide plans and instead talked about co-existing issues and problems in close relationships. She says he told her: “We provide a bed, three meals a day, and someone to talk to, and you are going to need to get that somewhere else.”

“I felt like no-one in the world gave a single s… about me.”

The next day, Emily tried to take her life. She was intubated in intensive care for two days, kept in hospital for several more, then readmitted to the mental health ward where, once again, she was quickly discharged. This time it took 48 hours. The psychiatrist was still dismissive, she says, telling her the ward was not an accommodation service. Emily has made a formal complaint to the Southern DHB about the interactions. Stuff has seen both the complaint letter and the response, in which the board apologised for “making [her] feel dismissed and disregarded”. It said the psychiatrist had discussed with Emily that a hospital admission would not alleviate her problems. She was having positive contact with community-based services, the letter said. Emily is considering escalating her complaint to the Health and Disability Commission.

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A generic aerial photo of Dunedin.

While waiting for treatment from public mental health services in Dunedin last year, Emily contacted half a dozen private therapists but was either turned down because her case was too complex, or put on another waitlist. ALDEN WILLIAMS/STUFF

While waiting for treatment from public mental health services in Dunedin last year, Emily contacted half a dozen private therapists but was either turned down because her case was too complex, or put on another waitlist. ALDEN WILLIAMS/STUFF

The Southern DHB says it does not discuss individual patient care in the media for privacy reasons but mental health executive lead Gilbert Taurua says: “We are always concerned to hear of people who have not had a good experience … accessing care when they need it.”

As of November, 240 adults are waiting to access specialist mental health and addiction services at Southern DHB. Adults wait 11 days on average to be assessed with mental health services, then weeks or months to start treatment, depending on the service, Taurua says. If the referral is triaged as urgent, the person will be seen within days or referred to a crisis team. 

Looking back, Emily knows there were circumstantial reasons that might have led her to terminating her pregnancy even if she had not had perinatal OCD. But the intrusive thoughts made it impossible for her to think clearly and make a reasoned decision. Having earlier access to therapy would have given her the support she needed to make a conscious decision, and reduced her distress afterwards.

Since July, Emily has put all her energy into rebuilding her life. She is articulate and knowledgeable about mental health. She has attended community groups, done weekly therapy and is working full time. The grief is still there and there are hard days, but she is doing better.

“I have come to a lot of self acceptance and compassion for myself through therapy. My psychologist has helped me reframe [the termination] as doing the best that I could with the resources I had at the time.”

I have made a commitment to honour my baby’s memory by making a beautiful life for myself and I hope that it involves children in the future. EMILY

*Not her real name.

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Suicide is complicated. There are many reasons why someone might attempt to take their own life. They may have suffered abuse or violence, feel like they have lost hope, been through a relationship breakup, work problems, or suffered transphobia, homophobia, bullying or racism. Mental health and addiction issues are only part of that picture.

One thing is clear though: Waiting for help for those issues does not cause suicide.

But if someone is already suicidal and they have the courage to reach out for help and that help is not available, then of course it is going to amplify their despair. MENTAL HEALTH FOUNDATION CHIEF EXECUTIVE SHAUN ROBINSON

Only seven out of 20 DHBs provided us with the number of people who died while waiting to access services over the last six years. The total came to 29 people. Two other DHBs declined to give us the information because the number was too small. Eleven DHBs said they did not record it.

In an effort to find out more, Stuff analysed all 486 coroner’s reports completed in 2020 where the death had been determined as being either suicide, illegal drug overdose, medication overdose, or alcohol poisoning. Most of those deaths (470) were suicides. The youngest was 12, the oldest 94. Perhaps unsurprisingly, close to 70 per cent had a history of mental health or addiction issues. But less expected was the fact that most of these people (about 74 per cent) had come into contact with mental health services at some point in their lives. Of these, 69 per cent had lived with depression. Other conditions included anxiety, bipolar disorder and schizophrenia.

Our analysis found only 3 per cent of cases were officially waiting to access help when they died. The tiny percentage did not represent the large number of cases where people did not access the right help. Because they got something they were not recorded as waiting, but they had been languishing for weeks, months, or years without the correct treatment.

Some people had accessed a range of services, but still lost their life to their mental illness. One coroner’s report is for Hayden Murray, a 30-year-old student from Dunedin who died by suicide in March 2019. From the age of 13, Hayden had more than 700 contacts with the Southern DHB’s mental health team. He had been hospitalised numerous times, saw counsellors, psychologists and psychiatrists, received treatment after failed suicide attempts, and was prescribed various medications. The coroner found there was no way in which Hayden’s death could have been prevented, and made no recommendations as to how he could have been better supported. Sometimes, even the most intensive mental health treatment is not enough.

Others were too unwell to engage with the people trying to help them and were dropped from services as a result. Al Sabah Mohammed Sweeney, 30, took her life in Auckland in February 2018. She had a history of anxiety and depression. After a suicide attempt in September 2015, she was referred to a care and recovery programme, but refused to go. In December 2016 she was again referred to mental health services due to ongoing suicidal thoughts, but refused any face-to-face contact.

In many cases, families said the services had not involved them enough in the care of their loved ones. The coroner's report into the death of a 16-year-old Christchurch girl in 2018 mentions her parents’ concerns at being kept at an arm’s length. The couple were committed to supporting their daughter. They arranged for her to see a private psychologist after being told she would have to wait at least six weeks to be seen by the public mental health service, but her mum told the coroner they did not fully understand the seriousness of the situation nor the degree of their daughter’s suicide risk. The 2018 He Ara Oranga report of the inquiry into mental health and addiction made recommendations to support families and whānau to be active participants in their loved one’s care.

A report into the December 2017 death of Auckland student Manaia* illustrates the difficulty of accessing Māori and Pasifika services. According to coronial data, Māori have some of the highest rates of suicide in New Zealand.

Illustration of Manaia and her mother.

Auckland student Manaia (not her real name) and her mother tried to access kaupapa Māori mental health services before Manaia died by suicide in December 2017.

Auckland student Manaia (not her real name) and her mother tried to access kaupapa Māori mental health services before Manaia died by suicide in December 2017.

Manaia was often mute as an inpatient when no Māori staff were present. Weeks before her admission at Auckland’s mental health inpatient unit, she had requested a referral to Manawanui Oranga Hinengaro, a kaupapa Māori community mental health service. She was referred for an assessment on December 8, which was later cancelled. Later, an Auckland DHB review into Manaia’s death found that at that time, Manawanui was less than 50 per cent staffed and had been unable to take referrals for six months. It could not provide after-hours care and its workforce was small. 

At only 19, Manaia already had a long history of mental health problems, including multiple suicide attempts and a week-long stint in a mental health hospital. About a week before her death, Manaia was admitted as an inpatient at Auckland’s mental health hospital. She initially found being there difficult, the coroner’s report states. “She was hard to engage with and she self harmed by scratching and biting herself and banging her head against the wall,” the report says. But this improved after she had contact with the Kai Atawhai Māori Cultural Team, and other Māori workers. Staff described her as polite, pleasant and co-operative.

She was often noted to be mute when there were no Māori staff present. A COMMENT MADE IN REPORT INTO MANAIA'S DEATH

During her last two days in hospital, Manaia's mood appeared normal and she told clinicians she had hope and things to look forward to. But at her discharge meeting on December 6, clinicians told Manaia that Manawanui could not see her after all. Manaia's mother later said that when Manaia heard the assessment had been cancelled, she lost hope.

Manaia was found dead the next day.

After her death, the ADHB completed an incident review. It concluded that the clinical care provided to Manaia was of a good standard, but the lack of Māori support available and Manawanui’s under-resourcing led to “deficiencies” in her care. This was not only a temporary problem with staffing but a “systemic structural problem”, the report says.

Mental health promotion campaign poster aimed at Maori.

The lack of kaupapa Māori mental health services has plagued the system for years.

The lack of kaupapa Māori mental health services has plagued the system for years.

Since Manaia’s death, ADHB has created two new Māori leaders roles in its mental health services, and increased staff at Manawanui. The service now has 22 full-time staff and is recruiting for two more. The average wait time for patients to have their first contact with the service from referral is 15 days. In her 2020 report into Manaia’s death, coroner Janet Anderson said the changes were encouraging, but much more needed to be done. She made a formal recommendation for the ADHB to increase kaupapa Māori services.

*Name has been change to protect the family’s privacy

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Anna sitting under a tree, looking up at the leaves.

Psychiatrist Dr Mark Lawrence (Te Rarawa) is the only Māori doctor in the service he works for in Tauranga. SUPPLIED

Psychiatrist Dr Mark Lawrence (Te Rarawa) is the only Māori doctor in the service he works for in Tauranga. SUPPLIED

Psychiatrist Dr Mark Lawrence (Te Rarawa) is the only Māori doctor in the service he works for in Tauranga. It is not an uncommon situation. Māori clinicians face huge expectations, he says. While the Māori medical workforce has grown, it still does not represent the community it serves.

“I can't be the doctor that sees every Māori patient in the service because I will be inundated and I will be burnt out.”

If you don’t indigenise systems, you keep colonising them. PSYCHIATRIST DR MARK LAWRENCE (TE RARAWA)

Health Minister Andrew Little says of the 660 additional frontline workers that have been funded since 2019, about 200 are working in the Māori and Pasifika space. “There has been a lot more work done this year to make sure that kaupapa Māori [and Pasifika] health providers have been commissioned.”

Māori tend to distrust health services because of colonisation and racism, Lawrence says. They rarely come to mental health services through their GP. Rather, they present in crisis with multiple problems including trauma, complex living situations, co-morbid issues and substance abuse. Many have been unwell for a while. The vast majority of Māori Lawrence sees in his service are treated against their will under the Mental Health Act. That’s why it is crucial to improve free access to early intervention services for Māori, he says. There has been progress, but not enough.

“A lot of people know how to use the system to their advantage. I can tell you now that Māori are not these people.”

The final word

Hearing people’s stories while doing this project was often heartbreaking and maddening. How did it get to a point where a suicidal child, a woman with a life-threatening eating disorder and a teenager spiralling into alcoholism are told their distress is not serious enough to warrant urgent help? How are so many clinicians burnt out to the point of wanting to quit? 

Progress to fix the mental health system is slow, and the Covid-19 pandemic has stymied things further. That might explain some of the more recent delays, but it is not an excuse. If anything, fixing the system is more urgent than ever. At the current rate, the gulf between supply and demand will only continue to grow.

One of the most frustrating things about watching this flawed system try and right itself is that it’s clear what the problems are, and in many cases how to fix them, yet they endure. The He Ara Oranga Mental Health Inquiry has already done much of this work and made recommendations. The Government has increased the services people can access through their GP or in the community as a result. But frontline workers have made it clear: more action is urgently needed.

Māori, Pasifika and youth in particular are crying out for help, and the money is not being spent fast enough or funneled to the correct places. Specialist mental health services have been largely forgotten despite huge growth in cases of severe distress. Half an hour with a health coach while visiting their GP does little to nothing for these people. 

For most people in distress, talking to the right professional is the vital part of the treatment. But this, like everything else, is woefully under-resourced. In countries such as France, the UK and Australia, talk therapy is more widely available. Staff shortages in New Zealand make that impossible here right now.

One obvious solution is to train more people who can provide talk therapy. While clinical psychologists are best placed to help those with complex needs, nurses, social workers, occupational therapists, counsellors, peer support workers and psychotherapists can all provide talk therapy too. Peer support workers in particular can be trained quickly and make a huge difference to people in distress.

Anna sitting under a tree, looking up at the leaves.

Student psychologist Lucy McLean has launched a petition to increase funding for training and internships in the profession.

Student psychologist Lucy McLean has launched a petition to increase funding for training and internships in the profession.

This year, student psychologist Lucy McLean launched a petition, already signed by 14,500 people, to increase funding for training and internships in the profession. It’s hard to understand why the Government has not done more here, despite He Ara Oranga making it a priority. Hundreds of psychology graduates apply to train as clinical psychologists each year, but only a handful make it because, in perhaps the saddest irony in the entire mental health system, there is not enough space for them. The Government has issued funding to increase the number of clinical psychologist internships from 12 per year to 20. McLean says the number of psychologists trained each year should be doubled, and internships properly funded.

Lucy McLean on the desperate shortage of psychologists

Student psychologist Lucy McLean says the number of psychologists trained each year should be doubled, and internships should be properly funded.

Student psychologist Lucy McLean says the number of psychologists trained each year should be doubled, and internships should be properly funded.

But there is hope too. There are people who got the help they needed to turn their lives around. People working in a challenging system but choosing to stay because they care and want to make a difference. The Government, for its flaws and sometimes glacial progress, has made a clear commitment to keep at it. None of its predecessors pledged anything like this.

Wellbeing campaigns - such as the one the Government launched earlier this year to support Aucklanders during lockdown, or All Right?, launched after the Cantebrury earthquakes - are cheaper ways to support large parts of the population. Surveys have shown they are effective.

Addressing the lack of clear and uniform data on the length of time people are actually waiting to start treatment, and what happens to them while they wait, should be a priority. Without a clear picture of the need, it is harder for services to advocate for targeted funding. Unlike staff shortages, this will not take billions of dollars and years to fix.

Until then, New Zealand’s mental health system will remain in a chronic crisis. The longer we wait to turn the ship around, the less our chances are of doing so. We need to talk, but most of all, we need to act. The wellbeing of Aotearoa depends on it.

Research and words Cécile Meier and Mariné Lourens
Visual journalist Ross Giblin
Data and visualisation Felippe Rodrigues
Design and illustration Kathryn George
Development Sungmi Kim
Editors Nicole Mathewson and Michael Wright

This project was created with financial support provided by a nib Health Journalism Scholarship.

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