Mental health services are caught in a storm of rising demand and crippling staffing shortages, and Covid is compounding the pressures. One teenager tells Investigations Editor Alex Spence their experience over several years left them disillusioned about how we care for some of our most vulnerable young people.
Warning: This article discusses suicide attempts, self-harm and mental health problems and could be distressing for some people.
One morning a week, Sam* spends a few hours hanging out with a support worker doing the sort of everyday activities most people take for granted – going for a swim, visiting the library. It's a way of learning the confidence and skills they'll need if they're ever to live on their own.
On a mild Wednesday in early June, they'd planned to cook a meal together, but the support worker was exposed to Covid-19, so Sam instead spent the morning at home trying to find other things to occupy their restless mind. "Keeping myself busy so I don't realise I have emotions," is how Sam puts it. A colouring book rests on the kitchen counter. A jigsaw puzzle is spread on the dining table.
Sam is 19, but seems much younger. Dressed in a hoodie and sweatpants, they sit at the dining table with one leg tucked under them, hands twiddling with a cube-shaped toy. Late-morning sun pours over hills behind the house, filling the living area with light. Sam's father, an executive at a big company, is at work. Their mother, Jayne*, a self-employed professional, is busy in another room. Their dog is at a groomer for a day. The peaceful scene is starkly at odds with the story Sam is about to tell.
"I have so much to talk about, because the system is so s***," Sam says.
Sam is one of a growing number of young Kiwis whose path to adulthood has been interrupted by mental health difficulties. Even before the coronavirus struck, rates of children and teenagers displaying signs of major psychological problems such as depression, anxiety and self-harm appeared to be rising significantly. It's a trend that has been observed across high-income countries, for reasons that are not well understood.
Covid-19 amplified a slow-building crisis. Researchers, clinicians and parents say young people have been disproportionately impacted by the extraordinary stress and daily disruption the pandemic has brought, aggravating problems for those who were already vulnerable; causing new episodes of mental illness, and pushing many people into such acute distress that they become a danger to themselves.
In Sam's case, as they explain it, their experience was largely a consequence of autism and attention-deficit hyperactivity disorder (ADHD) that weren't picked up when they were younger, gender dysphoria, and the problems these caused in adjusting to the world around them.
Sam is nonbinary, which means they identify as neither male nor female, and chooses to use gender-neutral pronouns such as "they" and "them". Being both transgender and neurodiverse puts Sam at the intersection of two marginalised groups that have historically been poorly supported by public services and had alarmingly high rates of mental ill-health and suicide.
Since early adolescence, Sam has experienced persistent low moods, severe anxiety, and bursts of emotion so powerful and overwhelming that they took to regularly cutting their skin with razor blades to suppress them. By Jayne's reckoning, Sam has tried to take their own life at least seven times in the past few years.
In that time, Sam had contact with a succession of public services that left them profoundly disappointed by the level of care New Zealand provides to some of its most vulnerable young people.
Sam and Jayne are among dozens of people the Herald spoke to in recent months as part of an investigation into the state of New Zealand's mental health system. To understand the pressure on services, we interviewed service users, caregivers, clinicians, researchers, and health officials; reviewed data from more than 25 public bodies; and examined thousands of pages of government and health authority documents, many of which had not previously been made public.
The reporting provides a troubling picture of a disjointed, underfunded, understaffed system that is more pressured than ever since the coronavirus outbreak. Confronted by increasing numbers of people needing urgent help at the same time as a desperate shortage of skilled workers, services across the country are struggling to provide a basic level of care, the investigation found – and the problem is especially critical in services for young people like Sam.
Sam and Jayne agreed to speak on the condition that the Herald agree not to reveal their names or certain details that could be used to identify them. They also shared confidential medical records and correspondence with clinicians.
In multiple conversations and email exchanges over several weeks, they described immense frustration and concern at a system that, as they see it, failed Sam in numerous ways over many years. It misunderstood Sam's complex needs, failed to provide effective care when Sam really needed it, and eventually all but gave up on them.
"I don't want it to happen to another person ever again," Sam says.
'Struggling to operate'
Sam was 12, in the second year of intermediate school, when they started to think there was something wrong with them beyond the usual adolescent struggles to fit in.
As a child, Sam showed some signs of neurodevelopmental differences. They were diagnosed at 9 with auditory processing disorder, which means they had difficulty understanding sounds.
Looking back now, Jayne feels guilty that she didn't pick up on Sam's autism and ADHD earlier. But she didn't know enough, and the signs weren't clear enough, to raise suspicions. In many ways, Sam seemed like a "normal" child – happy and easygoing. It wasn't until Sam reached early adolescence that it really became clear they were different to most of their peers.
As Sam recalls, they found it hard to make eye contact. They didn't laugh at jokes. While their peers explored teenage interests, Sam still liked playing with children's toys. They kept to themself at breaks during the school day, preferring to read books on their own rather than socialising. They wore a hearing aid to help with their sensory processing problems, which some classmates mocked.
The differences were all too obvious to other kids, and Sam was bullied relentlessly, Jayne says.
Jayne recalls a noticeable change in Sam's demeanour and behaviour at that time. Sam lost friends and struggled to make new ones. They were reluctant to go to school. They seemed constantly unhappy and exploded when upset. Several times they ran away during arguments. Jayne now believes these were autistic "meltdowns".
"Sam was struggling to operate in the world," Jayne says.
Sam muddled through at school, doing well enough at their studies not to draw attention from the teachers, but Sam says the sensory assault was increasingly intolerable. As they describe it, ADHD is like having a six-lane highway with no traffic rules in your head, with information veering in all directions at high speeds. Just getting through a lesson without erupting took a lot of effort.
"I got overwhelmed so easily," Sam says.
It came to a head after Sam moved to secondary school.
Jayne took Sam to the family GP, who referred them for counselling. "It was a waste of time," Sam says, "because the counsellor was like, 'You're not depressed, you're just having normal teenage problems.'"
What the counsellor didn't know, however, was that Sam had secretly begun self-harming, cutting themselves to suppress their emotional pain. "It felt better than what I was feeling," Sam says.
When Sam mentioned the self-harm to a guidance counsellor at school, the counsellor told Sam's parents. Jayne took Sam back to the family doctor, who referred them to their local specialist mental health service for children and adolescents. (Sam has asked that the service not be named as it could identify them.)
Known as "ICAMHS", "CAMHS", or "CAFS", depending on the region, these services exist to provide expert care for under-18s with moderate or severe mental conditions, such as depression, eating disorders, and psychosis. Across the country, they saw around 51,000 children and teens last year, according to Ministry of Health figures.
In reality, ICAHMS have become the agency of last resort for many traumatised and vulnerable New Zealand children. It is a role they are generally poorly equipped to play. As the Herald reports today, children's services across the country are floundering even by the broken-down standards of the mental health sector, squeezed by record demand in the aftermath of the pandemic and a staffing crisis that has been years in the making.
When Sam began seeing ICAHMS, they were diagnosed with depression and anxiety. Jayne says she also pushed to have Sam assessed for autism but the clinicians refused, saying Sam didn't "have enough traits" of the condition.
Instead, the service concentrated on managing Sam's low mood, self-harm, and emerging gender dysphoria. Doctors prescribed several antidepressant medications, none of which seemed to work. Sam spent several months in a form of group therapy designed for people with borderline personality disorder, but found it unhelpful and even traumatic at times. "It was awful," Jayne says.
Sam kept getting worse.
Sam and Jayne say that by overlooking Sam's neurodevelopmental issues, the health professionals never properly got to grips with the cause of their mental distress. "I think if my autism and ADHD were diagnosed early, pretty much all of it would have been avoided," Sam says.
Another major problem was that the staffing situation in ICAMHS – always precarious – was getting noticeably worse and affecting the quality of care the DHB could provide.
At their best, specialist mental health services consist of "multidisciplinary" teams of skilled, experienced professionals – psychiatrists, psychologists, nurses, occupational therapists and social workers – working closely and seamlessly to support the young person back to health. However, many services are so short-staffed that they can't provide holistic, continuous treatment.
The staff seemed to change constantly, Jayne says. Sam's undiagnosed autism meant they had trouble communicating and interacting with people, and the high staff turnover made it even harder for them to form the sort of close bonds required in therapy.
"There was no consistency of care," Jayne says. "They just don't have the numbers. They rotate. They quit. They go private."
It wasn't just lack of resources, in Sam's view.
"They didn't listen," Sam says.
Aside from overlooking Sam's neurodevelopmental challenges, Sam felt the staff didn't understand them in other important ways. Although the staff sought to address Sam's gender dysphoria, there didn't seem to be a deep institutional understanding of what it means to be trans. When Sam came out as nonbinary, some staff continued using the wrong name and pronouns, including in their clinical notes.
"You're sitting in a waiting room and someone calls your birth name," Sam says. "How's that make you feel?"
And Sam felt the professionals misunderstood the mentality behind self-harm, even though they spent a lot of time dwelling on it. "I don't think I've met a single professional who really understood it," they say, and then correct themself: "One of my psychologists had [self-harmed]. She was the only one who understood it."
In general, Sam says, they felt pressured by staff to embrace the pro forma solutions on offer and treated as if it was their fault when they didn't get better. It was invalidating and disheartening.
Sam was discharged by ICAMHS a few months before they turned 18. The psychologist they'd been seeing was leaving, and the clinicians felt Sam was now well enough not to require ongoing specialist care. Jayne had her doubts. "I didn't think it was a good idea," she says. "I knew they weren't well."
'A lightbulb moment'
Sam had just started their final year of secondary school, in 2020, when the coronavirus reached New Zealand.
As that year progressed, Jayne recalls, the disruption of the pandemic and the stresses of final exams collided with Sam's already fragile emotional state to have a devastating impact on their mental health. A suicide attempt prompted a callout by a crisis response team and a referral to the DHB's adult community mental health team. Sam managed to finish school – "I still don't know that happened," Jayne says – but they grew more acutely unwell.
A few days before Christmas that year, Sam was picked up by police in a distressed state on a motorway bridge.
Another night, just before new year, Jayne was making dinner when the police knocked at the front door. Sam, who was in their bedroom, had been communicating with a mental health helpline and a counsellor was so concerned they asked police to visit the house to do a wellness check.
On another night, Sam was found by police in a local park after a suicide attempt.
They took Sam to hospital, where they spent four days in an observation unit.
Sam's parents insisted Sam wasn't well enough to leave the hospital. "We can't take them home," Jayne recalls saying. "They've tried to commit suicide four times in a month."
Sam was admitted to an acute psychiatric unit. It was the first time they'd been away from their parents. "It was absolutely horrendous leaving them there," Jayne says. "You feel guilty. You feel like you're a bad parent."
After a week, Sam asked to be discharged.
Like many psychiatric facilities, the unit was rundown, understaffed and overcrowded with extremely unwell people – a disturbing place for an 18-year-old, let alone one with sensory processing difficulties. "It's not helping people get better," Sam says. "It's a holding cell."
"I just wanted to go home."
A psychiatrist who saw Sam on the ward assessed them as having symptoms of an unspecified anxiety disorder, persistent depression, emerging traits of a possible personality disorder, and evidence of neurodiversity. Sam would be referred for therapy, the notes said, but there was a long waitlist to see a psychologist in the adult service.
In the next several months, Sam made more suicide attempts, had encounters with the police and admissions to the emergency department. The follow-up care from the adult mental health service was minimal, Jayne says.
Desperate, Jayne sought out private alternatives – although that, too, was difficult. The private sector also has a severe shortage of psychiatrists and psychologists who specialise in children and adolescents, and a surge in demand for their services has meant long waits to be seen at private clinics. Many private therapists are so busy they've stopped taking new patients.
By now, Jayne was convinced Sam was autistic, and spent hours searching the internet for psychologists who specialised in treating neurodiversity. She emailed anyone she could find, dozens of therapists, asking them to assess Sam. One wrote back, saying they would find time to speak to Sam.
At their first meeting, the clinical psychologist diagnosed Sam with ADHD. Based on their initial screening, the psychologist also said they suspected Sam was autistic. Eventually, that would be confirmed by a lengthy assessment that cost Jayne around $2000.
In the car on the way home from the first appointment with the psychologist, Jayne and Sam felt relieved and vindicated.
"It was a lightbulb moment," Jayne says. "Finally somebody was listening to us."
'It could've been different'
Jayne, who is in her 50s, had a brief episode of mental illness when she was younger, but had never been in contact with the mental health system before Sam's troubles began. It was an eye-opening experience.
One afternoon, she wrote an email setting out the main flaws she'd identified with the services, based on her family's experience and conversations with other parents over the years. It's not an exhaustive list, but it provides a pithy summary of the obstacles recounted by dozens of parents interviewed by the Herald.
"What I have learned over this time," Jayne began, and proceeded to run through the problems point by point:
There's generally too little support for people who are mentally unwell.
The support that is available is inconsistent and too often inappropriate, unhelpful, not provided quickly enough or for long enough.
There's a huge shortage of experienced, qualified mental health staff and we're not doing enough to increase the numbers of people training in the field. Staff are leaving by the day because of the demands of the job and burnout caused by understaffing.
When seeking help, service users and whānau are passed between professionals and providers so frequently that it's unsettling. "There is no consistency of what little care is available and for a young person to have to tell their story over and over again is a further stress and trigger to their already fragile minds."
There's a big gap in provision for 18- to 25-year-olds who are too old for ICAMHS but aren't well cared-for by adult services.
Many of the young people caught up in the mental health system are teens with undiagnosed neurodevelopmental problems – particularly ADHD and autism. We need more professionals, Jayne says, who can recognise and diagnose those conditions early and then treat them effectively.
There are few alternatives for families who can't get timely and effective care through their overburdened public mental health services. "We cannot even get private help," Jayne says.
Finally, Jayne wrote, there's almost no support for parents thrust into a terrifying, confusing situation with usually a limited understanding of what is happening, what to expect, or how to respond.
As Jayne sees it, her family is more fortunate than many that go through the mental health system. She and her husband have a stable marriage and strong social ties to fall back on; they're financially well-off; they're health-literate and possessed of the self-confidence to lobby vigorously for their child. Despite all that, she says, they feel like they were defeated by the system.
It came at a huge personal cost. Being Sam's principal advocate and carer has effectively been a full-time job, and a demanding one at that. There have been weeks, Jayne says, when she spent more than 40 hours trying to arrange care for Sam and only a few hours doing paid work for her clients.
"All my energy goes into trying to get help and support for Sam," she says.
Jayne has barely stopped to process the toll it has had on her own mental wellbeing. She is still traumatised by dressing Sam's wounds after they self-harmed, but has put off dealing with it. When she is out in public, she flinches when she hears the sirens of emergency vehicles, wondering if they are heading for Sam.
"It's been really stressful for us," Jayne says. "We've gone to bed in tears at night because Sam's been so distressed or they've hurt themselves again. You feel like a failure as a parent, you know? Why can I help my child? Why can't I get help? We're educated parents, we've got good jobs, we can fund stuff. But money doesn't buy help.
"The hours and energy I spend on it, there's nothing left," she says. "When a child is unwell like that, you don't get a break. We can't go away together. We go away separately. Your relationship comes second. That's been really hard.
"I can understand parents who split up. I can really understand how that happens. There have certainly been times I've felt like walking out and just going, 'I can't cope with any of this any more'."
Some nights, Jayne lies awake in bed ruminating on what she could've done to spare Sam everything they've endured. What would Sam's life be like now if they'd had better care when they were younger? Would they be at university? Flatting? Living independently?
"If we'd got the support early, and the correct support, it could've been different."
'I want to get better'
It's nearly lunchtime. Sam has been talking for three-and-a-half hours, an unusual amount of time for them to spend with a stranger, but that shows how strongly Sam feels about the state of mental health services.
Jayne emerges from her home office. "I've just had a very grumpy call this morning," she says.
She has just got off the phone with the office of a psychiatrist who Sam saw by video call recently.
In the past year, Sam has all but given up on trying to get care through the public system and been seeking treatment privately instead. Sam says they're seeking two things: a psychiatrist to prescribe and monitor the medication that keeps their ADHD in check; and a clinical psychologist with experience of treating transgender and neurodiverse clients to provide long-term therapy. But both are in extremely short supply across the country.
It took six months to get an appointment with a private psychiatrist, and Sam is still waiting for an appointment with a psychologist after more than a year of waiting.
Jayne says they'd pay almost any amount of money for treatment if it made Sam better, but there just aren't the therapists available. "You can't even get on waiting lists," she says.
When they finally secured an appointment with a psychiatrist earlier this year, it cost $500 for a half-hour session by video. Not nearly long enough, in Sam's view, for the psychiatrist to understand their needs or for Sam to feel they'd established a connection.
Now Jayne was seeking another appointment to review Sam's medication but the psychiatrist's assistant said they'd have to pay hundreds of dollars more for that.
"Really?" Sam says, their voice rising to a high pitch.
"I've googled psychiatrists," Jayne says. "I've emailed a few this morning. I've even rung a few. But nobody's taking new patients."
"You would think the first appointment should get us to where we actually need to be," Sam says.
"So now we've got no choice, hun," Jayne says. "So I've booked it for tomorrow. And he's got a space, which is quite lucky. Otherwise he's booked until November."
In a state of limbo, the family has learned to moderate expectations. Sam is at least steadier than they were a year ago. It has been months since they self-harmed or thought about taking their life.
Day-to-day, they're trying to follow modest routines to manage their mental health: get up at the same time every morning, have breakfast, take a shower, walk the dog, study for a few hours.
Sam has enrolled in an online paper at a university and is hoping to eventually study full-time. They're talking about someday living on their own and pursuing a career supporting children with disabilities.
"I want to get better," Sam says. "I want to live independently. I want to have a job. I want to have a future."
* names have been changed to protect the family's privacy
Help us investigate
This is part of a series examining the state of mental health services and how to improve them. We need your help to continue our reporting.
If you have experience of child and adolescent mental health services, as a patient, caregiver or staff, and have information that would help us understand the pressures on services, please contact Investigations Editor Alex Spence at alex.spence@nzme.co.nz. We will not publish your name or identify you as a source unless you want us to.
Where to get help
If it is an emergency and you or someone else is at risk, call 111.
For counselling and support
Lifeline: Call 0800 543 354 or text 4357 (HELP)
Suicide Crisis Helpline: Call 0508 828 865 (0508 TAUTOKO)
Need to talk? Call or text 1737
Depression helpline: Call 0800 111 757 or text 4202
For children and young people
Youthline: Call 0800 376 633 or text 234
What's Up: Call 0800 942 8787 (11am to 11pm) or webchat (11am to 10.30pm)
For help with specific issues
Alcohol and Drug Helpline: Call 0800 787 797
Anxiety Helpline: Call 0800 269 4389 (0800 ANXIETY)
OutLine: Call 0800 688 5463 (0800 OUTLINE) (6pm-9pm)
Safe to talk (sexual harm): Call 0800 044 334 or text 4334
All services are free and available 24/7 unless otherwise specified.
For more information and support, talk to your local doctor, hauora, community mental health team, or counselling service. The Mental Health Foundation has more helplines and service contacts on its website.