‘I don’t want to die. But I need help’
Kiwis are paying the price for a deficient mental health system, writes Investigations Editor Despite big ambitions to reform the sector, service users and staff say too many people with mental illness are not getting timely and effective care.
In January, Lyss Rogers Rahurahu, 28, had a mental health crisis so distressing she didn’t think she could make it through another day on her own. She needed support urgently, but when she reached out to health professionals, she says she was frustrated at almost every turn.
“I am going to kill myself if I do not get help and you guys are not helping me,” she told a nurse in one meeting.
Rogers-Rahurahu is one of many New Zealanders who feel let down by a mental health system that is disjointed, underfunded and understaffed.
It has been four years since the landmark He Ara Oranga inquiry called for a transformation of our national approach to mental health. Three years since Labour made “taking mental health seriously” the top priority in its Wellbeing Budget.
Since then, according to service users, carers, frontline staff, researchers and health officials, the pressures on mental health services have continued and in some areas have got worse because of Covid-19. They warn the system is badly positioned to cope with a wave of psychological problems in the wake of the pandemic.
The challenges are urgent, these sources say, and impossible to ignore.
As part of the Great Minds project, the Herald is investigating the state of mental health system and how to fix it. Today, we report on mental health services.
Our investigation found:
● Mental health services are struggling to keep up with rising numbers of people in psychological distress and with complex conditions that are hard to treat.
● District health boards are rationing the care they provide because they don’t have enough staff.
● Psychiatrists, psychologists, nurses and other frontline staff are burning out and leaving the sector.
● Police receive hundreds of mental health and suiciderelated calls every day because there isn’t a better system to help people in crisis.
● Inpatient psychiatric wards are so crowded that psychiatrists say they dread being on call after hours because they won’t be able to find beds for people who desperately need them.
● And many people whose lives have been disrupted by an episode of serious mental illness wait for months to start psychological therapies that are vital to recovery.
In dozens of interviews, people at all levels of the sector expressed their concerns about the challenges facing our mental health services — and their impatience at the lack of change.
“I don’t think they’re getting it down in Wellington,” says a mother whose son is trapped in the system. “How broken it is.”
Lyss Rogers-Rahurahu was on the brink of a mental collapse, so distressed she didn’t think she could make it through another day on her own. It was a Monday in early January. Several weeks earlier, RogersRahurahu, a 28-year-old who lives in Rotorua, had felt her mind start to deteriorate. She went to her GP for help but got steadily worse. She was sleeping only a few hours a night and having thoughts about killing herself. The only thing keeping her going was a 3-year-old daughter who she adores.
Desperate, Rogers-Rahurahu had turned up the previous week at a community mental health centre run by Lakes District Health Board, where she’d been a patient in the past. She told staff she was planning to kill herself. A sympathetic nurse told Rogers-Rahurahu they’d arrange for her to see a doctor as soon as possible.
The weekend went by and still Rogers-Rahurahu hadn’t been given an appointment, so she returned to the clinic to plead to see someone right away. When she got there, Rogers-Rahurahu was told she’d been booked to see a psychiatrist on Friday — five days away. Rogers-Rahurahu protested that she couldn’t wait that long. She wasn’t safe.
“I’m going to kill myself if I do not get help and you guys are not helping me,” she told a nurse.
But the nurse said the clinic couldn’t arrange urgent assessments. There are “different departments” in mental health services, the nurse explained, and to be seen by a crisisresponse team Rogers-Rahurahu would have to call an 0800 number or go to Rotorua Hospital’s emergency department.
Rogers-Rahurahu was dumbfounded. Why hadn’t she been told that days ago? Why couldn’t they pick up the phone and summon one of their colleagues from the crisis team? The nurse apologised for the miscommunication but repeated that they didn’t do urgent assessments at the community clinic.
“I am going to kill myself and no one gives a s***,” Rogers-Rahurahu said, and walked out.
Rogers-Rahurahu is one of many New Zealanders who feel they’ve been let down by a disjointed, underfunded, and understaffed public mental health system struggling to keep up with rising numbers of people in psychological distress, according to an ongoing investigation by the Weekend Herald.
Four years after a landmark national inquiry, He Ara Oranga, called for a transformation of New Zealand’s approach to mental health, and three years after Labour made “taking mental health seriously” the top priority in its Wellbeing Budget, little progress has been made in fixing the systemic problems that prevent thousands of Kiwis with mental illness getting timely and effective care, the investigation found.
Despite some promising investments and initiatives under this Government, service users, frontline staff and health officials say there’s been little improvement across the system and in some areas the problems have intensified.
It stands to get worse because of Covid-19. The pandemic has caused more people to suffer mental health difficulties and compounded resourcing issues. As one health professional put it, the pandemic is a “ticking time bomb” of psychological need that they’re in a weak position to deal with.
To understand the pressures on services, the Weekend Herald spoke to dozens of people at all levels of the system; obtained data from more than 25 public bodies; and examined thousands of pages of government and health authority documents, many of which have not previously been made public.
Among the findings:
● Covid-19 has magnified a shortage of skilled mental health professionals across the country. Frontline staff are burning out and leaving, and often being replaced by less experienced workers. Almost 20 per cent of registered mental health nurses left in 2021, and there is a critical lack of clinical psychologists. DHB officials say they’re forced to restrict the care they provide because they don’t have enough people.
● A succession of critical reviews and well-meaning vision documents haven’t translated into a detailed national plan to address the systemic problems plaguing the sector. Services remain disjointed, inconsistent, and hard to navigate, resulting in too many people struggling to get timely and effective treatment.
● With far more referrals than they can handle, DHBs have raised thresholds for access to specialist services, according to staff and managers. Many referrals are rejected without a face-to-face assessment. As a result, people who are very unwell but not suicidal are often left to the care of GPs or others in the community who may also not have the capacity to treat them effectively.
● Labour’s focus on those with milder problems, while addressing an important gap, has overlooked people with serious mental illness, among the most vulnerable and disadvantaged people in society, clinicians and DHB officials say. A disproportionate number are Ma¯ori.
● The Government’s main mental health initiative, a $455 million early intervention service based in primary care settings known as the “Access and Choice” programme, has inadvertently added to pressure on specialist services, the DHBs say, by luring away staff they’re struggling to replace.
● DHBs are seeing more people who need urgent assessments because they’re at risk of suicide or serious self-harm. Frontline staff say this has meant people with less acute but still life-changing conditions are waiting longer. But although DHBs are doing more crisis contacts, the Weekend Herald heard many complaints from service users and families about a lack of support for people in acute distress. Police respond to about 200 mental health and suicide-related calls every day and emergency departments are inundated because there isn’t a better system to handle those in crisis.
● The quality of services varies hugely. Although much attention is focused on DHBs’ waiting times for initial assessments, people in the sector say bigger issues are the delays they experience after admission and the effectiveness of treatment. Service users often wait many months for psychological therapies that are vital for recovery.
● Serious incidents reported by mental health services to the Health Quality & Safety Commission — mainly patient suicides — doubled in the past decade to 233 in the last financial year, according to figures obtained from the commission.
● Inpatient psychiatric facilities are so crowded that several have an average daily occupancy rate exceeding 100 per cent and some psychiatrists say they dread being on call after hours because it’s so hard to find beds for people who desperately need acute care. New Zealand has one of the lowest rates of psychiatric beds per population in the OECD, researchers say, and the facilities that exist are typically badly designed and run down. Some are so understaffed that employees have raised safety concerns. The Government has 17 mental-health building projects worth $578 million in development, but some have been bogged down by delays and cost increases.
“The system is just so broken in so many ways,” says a clinical psychologist at one of the largest DHBs, who asked not to be named because he could be disciplined for talking to a journalist.
The crisis in mental health didn’t arrive suddenly.
It is a product of decades of underinvestment and poor planning by successive governments, and people in the sector say it will take many more years of sustained reforms and increased spending by future administrations to remedy.
The consequences of not addressing these issues could be immense.
Every year, about a fifth of New Zealanders experience a diagnosable mental health condition, according to the best-available estimates. Mental illness costs the economy about 5 per cent of GDP annually, the Ministry of Health says, and it is a leading cause of disability.
More than 38,000 people get a jobseeker support benefit for a psychological or psychiatric condition. People with mental illness are more likely to be poor, unemployed, homeless, or imprisoned. And they account for many of the roughly 600 people who die by suicide every year.
But these statistics, stark as they are, don’t convey the hidden misery of thousands of Kiwis confronting mental health problems and the profound impact it has on their careers, finances, physical health, and relationships.
In dozens of interviews, service users and families described desperate struggles to get support — and their frustration at the slow rate of change.
“The public system’s useless,” says one parent. “My son’s worse off than he was four years ago.”
“It’s just going to get worse and worse,” says another parent who lost a teenage child to suicide. “It’s just not going to get better.”
“I have argued, shouted, written to the Government,” says a mother whose son has been admitted to inpatient facilities numerous times. “Nothing changes.”
ROGERS-RAHURAHU SAT in her car outside the mental health clinic, feeling hopeless and abandoned.
It wasn’t the first time she’d been in crisis. She has a complicated history that includes more than her share of traumatic events — poverty, abuse, domestic violence. She was widowed at 24. She was homeless for a time after her daughter was born and spent several months in emergency housing motels.
Mental health problems have been a constant in her life. At 15, she was diagnosed with borderline personality disorder, defined by difficulty controlling emotions, impulsive behaviour, and unstable relationships. It is often misunderstood and stigmatised, even among mental health professionals. She has also experienced depression, anxiety, and episodes of psychosis.
Mental illness is not uncommon in her world, she says. People from socio-economically deprived areas are disproportionately likely to be users of mental health services. Ma¯ori are over-represented, accounting for 29 per cent of clients seen last year despite making up 17 per cent of the population.
“I don’t think I know of any Ma¯ori family in my community that hasn’t lost someone to suicide,” she says.
For the past few years, RogersRahurahu had been steady, which she credits partly to a couple of medications: escitalopram, an antidepressant, and risperidone, an antipsychotic. Her life wasn’t easy, but she felt upbeat. Money was tight, but she wasn’t struggling as she had in the past. She was studying online for a certificate in business administration.
But in the weeks before Christmas, she says the medication stopped working and she became trapped in a devastating spiral.
Even in her distraught state, Rogers-Rahurahu says she didn’t want to die. She couldn’t bear the thought of leaving her daughter. But she was desperate. She couldn’t see a way out.
Sitting in her car outside the mental health clinic, RogersRahurahu phoned her best friend, who she knew would try to talk her out of what her disoriented brain was telling her to do next.
Then she drove home.
When she arrived back at her house, one of the staff from the mental health clinic phoned to check on her. Rogers-Rahurahu, still upset, told them to leave her alone. Then the police called. The officer transferred her to another mental health support worker, who transferred her back to Lakes DHB’s crisis team.
The people on the other end of the line struck her as well-meaning and professional, but they all seemed to have minimal information about her case and so each time she had to answer the same painful questions, recount the same grim facts.
What’s happening? Are you distressed? Are you feeling suicidal?
In one of the calls, RogersRahurahu got exasperated.
She’d been to her GP. She’d been to community mental health. She’d told health professionals again and again that she was at risk, but now she was having to explain it all over again to another stranger because the agencies across the system didn’t seem to connect.
“Why is this handled so poorly?” she said.
“I’ve already talked to people until I’m blue in the face. I did everything right. And no one wants to help me, they just keep passing me off to someone else.”
She apologised for venting. “I’m just beyond frustrated. I don’t want to die, but I just don’t want to feel like this any more.”
The person was sympathetic. You’ve done everything you should have, they agreed.
This is the nature of the system. It’s dysfunctional. Services are bad at communicating, even within the same organisation. It’s frustrating for the people who work in it, too.
But the person was listening. They wanted to help. Could she just answer a few more questions?
After years of feeling ground down by mental health services, RogersRahurahu says it was comforting to have someone on the other side acknowledge how hard it was sometimes to get help.
“It just felt good for someone to validate me in that moment.”
She took a breath and told her story again.
Eventually, Lakes arranged for her to see a psychiatrist the next morning.
The DHB declined to comment on her case. “Lakes DHB does not comment publicly on the care of an individual patient,” a spokesperson says. “We encourage patients to contact us directly for any feedback and concerns they may have.”
THREE YEARS ago, when Labour revealed its first Wellbeing Budget, it promised a new approach to mental health so “every New Zealander who needs it has access to a range of free services that support and maintain their mental wellbeing”.
The new Government committed $1.9 billion to improving mental health, the centrepiece of which was Access and Choice, designed to provide practical guidance for people with mild needs in primary care settings. There was also funding for workforce development, rebuilding psychiatric units, and other initiatives.
But although people in the sector welcomed these investments as an encouraging start, they say there’s still a huge gulf between the high-level ambitions for mental health and the daily reality for hundreds of thousands of Kiwis with mental illness.
Labour chose to give relatively little of the money to specialist public mental health services operated by DHBs, which treat the most unwell patients, staff and officials say.
These services, often described as the sector’s “ambulance at the bottom of the cliff ”, were already overburdened before Covid-19. Referrals increased by 42 per cent in the past eight years, to 406,577 last year, according to Ministry of Health data, but their remit and resources haven’t expanded to meet that growing need.
DHBs receive ringfenced funding from the ministry to provide treatment to 3 per cent of the population with “moderate and severe” mental health conditions, around 191,000 nationally last year, but experts say this is an outdated formulation that significantly underestimates the true number of people with serious problems.
Because they’re getting so many more referrals than they’re resourced to handle, DHB staff say they’ve raised the thresholds for admission to their services.
“It’s a conscious thing we’re doing,” says one manager, who asked not to be named because they are not allowed to talk to media.
“We’re all aware of why we’re doing it. We’re aware of the pressure on our colleagues. We’re aware of their caseloads.”
DHB staff say they try to ensure that people who are declined by mental services are handled by GPs or community organisations that have the expertise to help them, but strain across the system is such that it doesn’t always work out that way. Too many people with life-changing problems are left to make do with inadequate support.
The problems confronting services aren’t just about rising demand, staff and officials say. They’re seeing more patients who are acutely unwell and more with complex conditions that are hard to treat. Two groups that have increased significantly, one DHB executive says, are patients with psychosis complicated by synthetic cannabis or methamphetamine use, and chronically suicidal or self-harming teenagers.
And while these pressures have grown, the services’ ability to manage them has been constrained by a worsening shortage of skilled and experienced staff, including psychiatrists, clinical psychologists, nurses and allied health workers.
Workforce shortages in mental health are not new. It is a dilemma years in the making. But the squeeze became a “perfect storm” during the pandemic, in the words of Dr Rees Tapsell, director of clinical services at Waikato DHB’s mental health service.
Turnover is high. Many vacancies are unfilled. Staff have heavy caseloads, low morale, and high levels of burnout. Many services are
relying on junior staff, locums, and other stopgap measures to keep their rosters staffed. And patient care suffers as a result.
The Weekend Herald obtained numerous documents from DHBs, including internal memos, meeting notes, presentations, leadership updates, risk registers, and healthand-safety notices, in which staff and managers made clear the pressures the workforce shortages are putting on them and the compromises to services as a result.
“I am very concerned about the state of play in this area,” the interim mental health lead of Taranaki DHB wrote to her bosses in October 2020.
“Sustained difficulties to find enough staff with experience to match patient acuity and bed numbers has resulted in an almost daily requirement for a staff member/ s to work overtime or double shifts (16 hours) and is neither healthy nor safe for either patients or staff and has become untenable.”
“The workload is not sustainable,” the medical director of Whanganui’s mental health service told their DHB’s leadership in November.
“I have to reiterate that I am concerned for our ability to deliver services to an adequate standard . . . It may be, regrettably, that we are not able to offer certain services or very limited services.”
But reforming services isn’t only a matter of staffing and funding, people in the sector say. There are deeprooted structural, cultural, quality, and accountability problems that need to be resolved.
A common theme running through the interviews with people in the sector was frustration that there still isn’t a detailed plan for a unified, coherent, continuous mental health service after so much talk over the years about the problems.
“It seems to be quite broad-brush at the ministry and DHBs are left to do whatever they do,” says a former senior clinician at one of the largest DHBs. “We in the sector really want some hope that somebody has got a plan. There isn’t a great sense of that.”
ROGERS-RAHURAHU ISN’T alone in feeling disillusioned. The Weekend Herald heard many complaints from service users and their families about how hard it is to get help or the quality of treatment they received.
Their accounts weren’t uniformly critical — and most acknowledged the constraints services are under — but the problems they raised are significant, systemic, and having a material impact on people’s lives.
Some of the most heartbreaking conversations were with parents whose children attempted suicide, in some cases multiple times, and who felt powerless to support them.
In one interview, a parent who lost a teenager to suicide said they were struggling to get treatment for another of their children who was experiencing serious difficulties.
Turned down by their local mental health service, they were stuck paying for private therapy that the parent didn’t think was helping.
“We will lose another child,” the parent says. “I know that is coming one day. And all I can do is keep it off for as long as possible.”
Another service user says a decade under the care of mental health services as a child and adult has been “soul destroying”.
“Under the adult mental health outpatient system almost everybody I have met has been an amazing person trying to do their best,” they say, “but there isn’t enough staff nor
When the new structures are in place, we’ve got to see a difference in how mental health services are operating across the country.
Andrew Little, Minister of Health
funding to actually do what needs to be done.
“The crisis team are likewise made up of amazing people. They talk people back from the edge of the cliff, but then they disappear and may or may not be there when that person ends up back on the edge.
“Under the current system this seems almost a certainty. Even if you’re suicidal in [their region], you are still waiting at least three months to see a psychologist for therapy, assuming you even get accepted to the waitlist.”
In another interview, the mother of a young man with schizophrenia told the Weekend Herald she’s so weary after watching him cycle in and out of inpatient units she’s almost given up hope he’ll ever have a stable life.
“We go around in circles,” she says. “Four years on, I am too tired to keep fighting. He is getting worse and worse. He will end up being another statistic.
“It’s bloody awful as a mother or father to put your hands up and go, ‘I don’t know what else I can do’. I have screamed at the police. I have screamed at the crisis team. I have screamed at the community team. I can’t scream any more.
“I don’t think they’re getting it down in Wellington,” she says. “How broken it is.”
IN INTERVIEWS with the Weekend Herald, Health Minister Andrew Little defended Labour’s progress to date but acknowledged the frustrations across the sector.
“We have services in place that were simply not there three or four years ago,” the minister says, referring to the Access and Choice initiative.
But he conceded there are serious problems across the system, particularly for people with acute and severe needs, and said the Government “still have to improve our performance in that respect”.
Little says a shake-up of the health sector due to take effect in July will be a big step toward a more cohesive national system.
The health restructuring, which combines the 20 DHBs into a single national body known as Health New Zealand, will make it easier to set clear standards and ensure they’re applied across all services around the country, Little says.
One of the first actions the Government is taking in establishing Health New Zealand, the minister says, is folding mental health services into the new operating body “so they can get established as quickly as possible, because this is going to be a priority area”.
“When the new structures are in place, we’ve got to see a difference in how mental health services are operating across the country.”
On the front lines, however, there’s scepticism.
“I’ve heard so many promises,” says one DHB mental health manager, who asked not to be named because he’s not authorised to speak to the media.
“The Ministry [of Health] are incompetent half the time,” the manager says. “I don’t think they’re quite clear about what mental health is and what it’s like on the ground. I think there’s a big disconnect in what’s being reported back.” Expectations on mental health services have been raised far beyond what they can reasonably achieve, the manager says. Frontline staff feel constant pressure from managers and the Government to meet demanding performance targets. Patients and their families expect to be seen quickly and get angry when they’re told they can’t be. Media scrutiny is constant and unforgiving when they make mistakes.
If the system is to truly improve, the manager says, politicians and the public need to start with an honest debate about what they want from mental health services and what it would take to achieve that.
“Advocates like Mike King are doing the right thing by saying it’s okay to ask for help, but what help are you asking for and what’s the right service to ask it from? That’s maybe the question that needs to be asked.”
Health services “cannot fix social problems,” he says.
“We can’t fix homelessness. We can’t fix all the drug problems in the community. We can’t fix all the domestic violence that’s going on. “We can’t fix the fact that people haven’t got
jobs.”
“I’VE BEEN in the system for 10 years,” Rogers-Rahurahu says. “It’s not changing. It’s not getting better.”
Back in January, after feeling abandoned when she reached out for help, Rogers-Rahurahu saw a Lakes psychiatrist, who made minor changes to her medication and discharged her. In the weeks after that, she found a new GP who put her on another antidepressant; she stopped taking the antipsychotic voluntarily, believing it was no longer working.
Today, Rogers-Rahurahu says she’s doing much better. There have been days lately when she’s been down, but the distress she felt earlier in the year has passed. She’s looking ahead.
Rogers-Rahurahu thought hard about sharing her story publicly. She says she’s hesitant to criticise staff doing a difficult job in hard conditions. But she believes nothing will change unless people who depend on the system have a voice in the conversation about reforming it.
“This whole process kicked up a fire in me,” she says.
Recently, she re-read the He Ara Oranga report. And she’s been talking to a community group in Rotorua about organising some local events for Mental Health Awareness Week in September.
“I want this system to get better,” she says. “I want people to have access to a system that values us.”