Great Minds: Parents' pleas for political leaders to respond to youth mental health crisis

Jacinda Ardern made mental health a priority when she became Prime Minister. Photo / Mark Mitchell

Night after night, they spend lonely hours searching the internet for someone to help their distressed and mentally ill children. They argue until they're exhausted with clinicians and managers to get their kids into treatment services. They rush their children to hospital emergency departments after they have tried to kill themselves.

They are fed up.

Today, parents of children and teenagers who are experiencing serious mental distress or illness are calling on our political leaders to commit to urgent action to address a "new pandemic" of mental ill-health among young people that has been compounded by Covid-19.

"What if it was your daughter or son?" says one Auckland mother who says she experienced numerous roadblocks in getting help when her teenage daughter started self-harming.

"We are totally exhausted. Our whole life is devoted to this," says a father of a suicidal teenager. "We are on our own."

"You just feel like you're left alone all the while worrying whether your loved one will try and kill themselves again," says a mother who nearly lost a child to suicide during the pandemic.

Even before the Covid outbreak, rates of anxiety, depression, self-harm, eating disorders, and other life-changing mental conditions were rising steadily among children and teenagers, for reasons that are still not well understood. The pandemic accelerated the trend, aggravating problems for people who were already vulnerable and triggering episodes of distress and mental illness for many who had never experienced it before.

Over the past several months, the Herald has exposed in its Great Minds series how the rising tide of distress is overwhelming public services which don't have the resources or expertise to cope with it — including our disjointed, underfunded, understaffed mental health services — and causing enormous suffering for thousands of Kiwi families.

This week, a series of stories examined the youth mental health crisis from several perspectives, including the impact of a suspected teenage suicide on one Auckland family, the drastic lack of support for young people in crisis, and the government's mixed record on mental health reform.

To conclude this week's series, the Herald asked 25 of the dozens of parents we have spoken to in the past eight months for their views on what should happen next to respond to the crisis and put a selection of those comments to representatives of Ardern and National leader Chris Luxon.

Opposition leader Chris Luxon says National will focus on 'improving access to mental health services' if it gets into government. Photo / Mark Mitchell.

Prime Minister Jacinda Ardern said: "We are deeply worried about the impact Covid-19 has had on mental health, especially for young people."

"Over the past five years we've been working hard to rebuild what was a neglected and underfunded mental health system by providing a more appropriate level of funding. When it comes to mild to moderate mental health needs, we've had to build the system from scratch..."

"But there is more to do. For me it's non-negotiable that we must continue to invest in critical areas like youth mental health services."

Luxon told the Herald: "It is heart-breaking to read of the recent stories of mental distress in our young people as a result of the pandemic. Mental health is a massive issue in New Zealand. Improving access to mental health services will absolutely be a focus and priority of a National government I lead, especially for young people."

"We need to be focused on improving access to mental health services and reducing wait times. A National government will establish New Zealand's first dedicated Mental Health and Suicide Prevention Minister, who will be responsible for driving improved results. National will also measure our progress in delivering and providing access to services, not just allocate funding and assume that is enough. We will also power up the community organisations that are at the coal face getting mental health support to the people that need it, to drive better results."

Resources for parents of children with mental health problems

The parents come from all over the country, representing a range of experiences with serious conditions including depression, anxiety disorders, attention-deficit hyperactivity disorder (ADHD), and anorexia.

Their comments reflect profound frustration, exhaustion, and hopelessness after months, in many cases years, of battling to get adequate care for children whose lives have been severely disrupted.

Despite the government's big ambitions for improving the sector and $2 billion of investment in mental health-related initiatives, these parents say little progress has been made in fixing the systemic problems that prevent many people from getting timely and effective care.

"Our leaders and politicians need to understand that for youth the Covid pandemic has resulted in a national mental health pandemic that inside families feels more destructive than the infection itself," says an Auckland mother of a teenager with an eating disorder.

"It just isn't good enough," says another parent. "Where has the $1.9 billion promised in 2019 gone?"

"There is absolutely nowhere to go when you need help," says a parent in Canterbury.

A mother in Auckland described the state of mental health services for children and adolescents as: "Underfunded. Under-resourced. Lack of specialist support. Lack of consistency across the country. Lack of education and training among professionals. Challenges in accessing services. Extremely long waiting lists. Discriminatory services resulting in a two-tiered system based on race and income. Thresholds for support and need and risk that are unacceptably high. Minimal holistic or multi-disciplinary approach. The list goes on."

"We are left stranded to find our own way with a life-threatening illness," says a mother whose daughter has an eating disorder.

The parents say an array of changes are needed to improve the system, including more skilled professionals with the expertise to deliver specialist interventions; and streamlining services so that they are easier to navigate, communicate better, and are consistent across the country.

Among the most pressing challenges is a startling increase in teenagers with eating disorders in the past two years.

"There needs to be an urgent overhaul of the eating disorder services in New Zealand, not just within the treatment rooms but the support for those on the waiting list and for those coming out of public treatment," says Rebecca Toms, a mother and campaigner in Christchurch.

The Eating Disorders Association New Zealand is calling for an urgent review of the eating disorder services, to ensure that the growing number of young people with conditions such as anorexia get quick access to a high standard of care delivered by qualified clinicians.

Another group that needs a lot more attention, the parents say, are children with neurodiverse conditions such as autism and ADHD, who too often fall through the cracks.

The Herald's reporting prompted an admission from Health Minister Andrew Little that child and adolescent services are in crisis: "It's under huge pressure. There are areas where I know young people in particular are struggling to get the specialist attention that they need, waiting a long time to get it - that is in crisis. Children and adolescent mental health services are in crisis."

In August, senior officials responsible for mental health services committed to building a comprehensive national crisis-response service as part of the restructuring of the health system and the merger of former district health boards into Te Whatu Ora.

Teenager Cassandra Fausett died by suspected suicide in September 2019. Her parents chose to tell their story so that no other family would go through what she went through. Photo / Supplied

About the Herald's investigation

In April, the Herald and NZME launched a major editorial project, Great Minds, to examine the state of New Zealand's mental health and solutions for improving wellbeing in the aftermath of the Covid-19 pandemic. As part of this, Investigations Editor Alex Spence examined the state of services for people with the most urgent and severe problems, with a particular focus on young people.

In the past eight months, we spoke to dozens of people at all levels of the system, including service users, their families, clinicians, researchers, and officials; 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.

Highlights from our investigation:

In April, we revealed that the rates of Kiwis reporting poor emotional wellbeing had increased sharply during the pandemic, particularly among young people. We told the story of Stacey (not her real name), a 12-year-on Auckland's North Shore, who developed obsessive-compulsive disorder (OCD) during the pandemic. It became a "living nightmare" according to her mother, and they struggled to find effective care.

In May, we revealed that despite some promising investments and initiatives under this government, service users, frontline staff and health officials say there's been little improvement for people with acute, serious conditions and in some areas the problems have intensified. "It's not changing. It's not getting better," said Lyss Rogers-Rahurahu, a 28-year-old in Rotorua who has been in the system for more than a decade.

In June, we told the story of Sam (not their real name), a gender nonbinary 20-year-old whose mental health problems included autism and attention-deficit hyperactivity disorder (ADHD) that weren't picked up when they were younger. Sam and their mother, Jayne, identified a host of problems in CAMHS that left them feeling like they were on their own. But now they're struggling to find effective care in the private sector too.

In June, we revealed that CAMHS services across the country were at "crisis point" after have been overwhelmed by unprecedented demand and a workforce crunch years in the making. Internal documents showed that services are struggling to provide an adequate level of care in the face of unprecedented demand, putting patients at risk and causing staff to burn out. "Experienced clinicians have been resigning at alarming rates," one executive said.

In July, we revealed that one country's three inpatient psychiatric units for adolescents, the Regional Rangatahi Adolescent Inpatient Unit in Porirua's Kenepuru Hospital, was in such poor condition and so understaffed that employees worried that it would lead to "serious injury or death", according to a damning inspection report by the Children's Commissioner. In a follow-up story, we revealed staff concerns had led to a confrontation with DHB executives and the issuance of a provisional improvement notice, a formal health and safety procedure.

Last week, we reported the story of Cassandra, a 17-year-old from south Auckland who died by suspected suicide in September 2019. Cassandra's parents, Caroline and Steve, agreed to speak about their daughter's "horrendous" ordeal because they want to highlight the urgent need for more support for teenagers with mental health problems and the desperate, lonely circumstances of the families struggling to protect their children. Their story – based on hours of interviews and a large volume of documents relating to Cassandra's life and treatment that they shared with the Herald – provides an unprecedented insight into the devastating impact the crisis is having on young people, their families, communities, and the services that care for them.

On Monday, we revealed that briefings to Prime Minister Jacinda Ardern set out a stark assessment of the capacity of specialist services to cope with the rising demand. They treated fewer patients last year than they did a year earlier, which officials blamed on disruption from Covid-19 and severe recruitment challenges. Ardern has asked officials to examine how much it will cost to bring funding for children's services in line with that of services for adults.

On Tuesday, we wrote about the thousands of teens being rushed to emergency departments because mental health crisis services are too stretched to help them, and the impact this is having on those young people and other public services including the police and hospitals. One teenager told us when she tried to get help in crisis, "I was treated as a nuisance and made to feel like I was just looking for attention." We revealed that National is planning to expand a crisis-response pilot in Wellington to other urban centres, but that Ministry of Health officials were lukewarm about the initiative.

On Wednesday, we reported that the Coroner's office has launched a joint inquiry into suspected suicides by three young women after initial investigations raised concerns about material they viewed on Instagram. Cassandra Fausett was one of the young women.

On Thursday, we told the story of one desperate Kiwi-American family that has decided to move back to the US to find treatment for their teenage daughter with severe anxiety. "We cannot see any further options here," the girl's mother said.

On Friday, we looked at some of the policy measures taken by the government to respond to the crisis, including early intervention initiatives funded through its $1.9 billion mental health package in the 2019 Wellbeing Budget. Some experts in the field say they're cautiously optimistic about the direction of travel, while others warn that the response so far has been "piecemeal" and hasn't kept up with the growing demand.

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.JW5X4EMPLIRHYJU/