Mental health campaigns promote a simple message: Ask for help. But for thousands of New Zealanders living with mental health and addiction issues, the hardest part is not asking for help. It’s being told they’ll have to wait months to get into treatment. Or that they don’t qualify for help.

Many continue to spiral downward while they wait, losing jobs, wrecking relationships and damaging their health. Some end up in jail before they reach the front of the queue. Families and friends desperately trying to support their loved ones are affected too. Along the way, most of them lose hope.

A few don’t survive the waiting game, dying by suicide, an eating disorder, an unintended overdose, or in an accident before they access the right help. 

In 2017, the Government promised to fix systemic issues plaguing the mental health system. A $6 million inquiry led to an unprecedented $1.9 billion funding boost in 2019 for the sector. More than two years on, clinicians say there are no tangible signs of improvement.

The system has become a perverse waiting game where even being desperately unwell counts for nothing. Serious cases are reduced to waiting for treatment, while the not-so-serious cases are left to fend for themselves. 

Exactly how many people are waiting to access treatment, how long they wait and what happens to them while they wait is not well recorded. This is part of the problem as it makes it even more difficult to determine its extent, the reasons for it and where to start fixing it.

With the Covid-19 pandemic compounding distress and lockdowns further delaying access to help, it is more urgent than ever to find solutions.

CÉCILE MEIER and MARINÉ LOURENS talk to those holding on to hope, and the overworked clinicians scrambling to get to them in time.

Anna McConnell was sitting in her mum’s car, clutching a plastic bag in case she needed to throw up. Her body tensed up and colour drained from her face. Wringing her clammy hands together, she felt like she had forgotten how to breathe. The air was going in but it was like there was no oxygen in it. It was the first time she had left her house in weeks. She was scared she would start vomiting uncontrollably if she left the car to go to this place she had never been before, to meet people she did not know. 

It was August 2019, and the then 20-year-old was waiting to go into an assessment for one of the 10 beds in Auckland’s only medical detox service. Earlier that day, she’d had two shots of vodka. When she first started drinking years earlier, alcohol had helped her control panic attacks. It meant she could leave the house and go to parties. Now it made her feel sick and she hated every drop she had to drink. But the Community Alcohol and Drug Services key worker she first saw in June had explained to her parents she needed to maintain her drinking until she could go into medical detox (because alcohol withdrawal can be dangerous). So they supplied her with up to 24 standard drinks of vodka a day instead of her drinking whatever she could get her hands on in secret.

It’s hard for Anna to share her story publicly. She schedules interviews early in the morning so her anxiety does not have time to rise, and warns she will need to stop if she has a panic attack.

Anna does not remember how she made it inside the building for the assessment that day. She was in a catatonic state, she says. But she does recall what happened once she was inside. She answered questions, showed the clinicians her tracking notebook for her alcohol intake, and then the bad news came. There was no space to get into the detox yet. It could be months before a bed was free.

Anna’s story barely hints at the chronic problems plaguing New Zealand’s mental health system, including staff and bed shortages, protracted waiting lists and haphazard record-keeping. 

About 4923 people around the country were waiting to access public mental health and addiction community services in March, according to data provided to Stuff. This excludes those who asked for help but were turned away because they were not deemed severe enough. Some district health boards (DHBs) say they turn away half the people who are seeking help after an initial assessment. The other half might then have to wait days, weeks or even months to be seen by the relevant service, which will decide whether they are a good fit. And then they wait again to commence treatment.

DHBs are required to get 80 per cent of people referred for non-urgent mental health or addiction services seen within three weeks. On paper, it looks as though most DHBs meet this target. But talking to people with lived experience of mental illness and those who work in the services, it quickly becomes evident the statistics are misleading. The Ministry of Health defines waiting times as the length of time between the day a person is referred and the day when they are first seen by the service. That first interaction is not the start of treatment. It is usually an assessment to see if the service is a good fit for the person. Many patients face weeks if not months waiting to then start treatment.

To gain a clearer understanding of how long people wait for help, Stuff asked the country’s 20 DHBs to provide average wait times between assessment and start of treatment. Only six DHBs provided this information. The remaining 14 either said they did not record data in this way, or answered the question by providing data for wait times from referral to first face-to-face contact rather than from assessment to starting treatment. The wait times provided ranged from a few days to seven weeks.

We also asked for the longest time someone had waited in the last six years. Half the 20 DHBs did not answer that question. For those that responded, the longest recorded wait time was 526 days in Taranaki. Auckland’s longest wait time was seven months. This was getting closer to what we were hearing from those at the coalface.

“They are required to take your order within a predetermined amount of time to meet certain targets, but after you’ve ordered, you are moved to the waiting bay to wait for your order. So technically you’ve been helped, but you still haven’t received your food,” says Dr Marthinus Bekker, a clinical psychologist who previously worked in the public mental health system.

Asked whether wait time data accurately reflects people’s experience on the ground, Health Minister Andrew Little says decisions on access to treatment are based on “clinical judgement”. The most recent wait time statistics “are better than they have been for a long time”, he says. “And for someone in distress, a short period of time can feel like a long period ... any undue delay in getting the treatment that is needed is always a cause for concern.”

When it comes to people needing the most urgent care, DHBs say there is no wait to get admitted as an inpatient. But with most mental health hospitals operating at, or above capacity, the bar to be assessed as urgent is incredibly high, and patients are often discharged before they are ready. Research conducted by the Association for Salaried Medical Specialists this year found mental health hospitals around the country frequently exceed 100 per cent occupancy levels - well above the 85 per cent occupancy considered clinically safe. As a result, it’s common for people to be sent home from the emergency department after a suicide attempt, and we have talked to several people in severe distress who were told they did not meet the threshold to be admitted as an inpatient or outpatient.

“It’s probably true that there is no wait time as an inpatient but the problem is, if you are on call after hours and there are no beds to admit people to, then clinicians will need to find alternatives,” Royal Australian New Zealand College of Psychiatrists NZ chair Susanna Every Palmer says. This means sending extremely distressed people home, having them wait in the emergency department, or calling police, she says.

A psychiatrist working for a DHB after-hours commented in a recent RANZCP survey:

Anna started having panic attacks at age 12. 

She still struggles to talk about one of the worst ones. It came during a ballet competition. She was shaking with anxiety before going on stage but pushed through and started dancing. As her routine went on, Anna couldn’t breathe. She started dry heaving. Finally, it became too much. She ran backstage to throw up.

A family member with knowledge of psychology had taught her she needed to face her fears in order to conquer them. This is called exposure therapy - a common treatment tool that’s effective for many people. But for Anna, a perfectionist and eager-to-please child, it only caused more trauma.

“I believed that I had to keep facing the fear and continue until it was so physically bad that I dry-retched or vomited.”

Her parents arranged for her to see a psychologist and a psychiatrist privately, but her anxiety kept rising to the point she was unable to go to school in years 11 and 13. In October 2016, she had a string of panic attacks where she threw up repeatedly. That’s when she started shutting herself in at home with a safety person at all times. Her parents would work from home and her grandma, grandad and auntie came around to relieve them.

“I just have no idea what would happen to me if I didn't have my family.”

That period, which lasted for months, took a toll on her friendships and put a huge strain on her family. Anna became increasingly isolated and started drinking to cope. Her family tried to get her in Auckland’s Kari Centre, which helps young people under the age of 18, but there was no space.

Anna’s story illustrates the complexity of the issues plaguing the system. At no point was she left to her own devices, but it took her a long time to find the right services. On paper, she waited six weeks from referral to Auckland’s medical detox to assessment, and another six weeks until she was admitted there after someone cancelled their stay at the last minute. But in reality, she had been waiting years to access the right help, during which she grew so anxious she could not leave her house and her drinking became a toxic addiction.

In March 2017, Anna attempted suicide. She was treated at the emergency department overnight and referred to the Kari Centre in the morning. She had her first appointment there three weeks later.

“I feel like that suicide attempt was a desperate cry for help.”

Auckland DHB’s Tracy Silva-Garay says the Kari Centre has worked incredibly hard to reduce wait times. As a result, there is now no waitlist to be seen by the team, which aims to see all new acute referrals of children and young people within seven days.

After nine months of family and individual therapy with a psychologist at the centre, and with the constant support of an occupational therapist, Anna was doing a lot better. She could leave the house on her own and had resumed her studies. But six months after she turned 18 in July 2017, she was kicked out of the centre and told she was no longer unwell enough to qualify for adult mental health services under the public system.

“Everything went downhill from there.”

One in five New Zealanders live with mental illness and addiction, and it is estimated that nearly half the population will live with mental distress or addiction at some point. Many will get help from their GP, a counsellor, a social worker or somewhere else. But for about 4 per cent of the population, this won’t be enough. They will need specialist mental health and addiction services.

In 2019-20, that translated to 184,711 people, according to Ministry of Health data. To gain a better understanding of the time people actually wait to access help, and the effect that wait has on their lives, Stuff sent out a survey to everyone who had signed a petition to increase access to psychologists in Aotearoa; 126 people responded. The survey was not scientific, but it unearthed harrowing tales of broken relationships, lost jobs, studies put on hold, suicide attempts, eating disorders and mentally unwell people waiting up to two years to get help. Most alarming of all were the responses from families of those who had died by suicide while waiting for help.

Just like finding out exactly how long people wait to receive treatment, finding out exactly how many people die each year while waiting is difficult, as the information is not consistently recorded. 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 said they did not record that information.

In a quest to find out more, we asked the Ministry of Justice to provide all coroner’s reports between 2014 and 2020 where the death had been determined as being either suicide, illegal drug overdose, medication overdose, or alcohol poisoning. This, again, would not tell the whole story as it excluded accidental deaths, but it still amounted to a staggering 3385 reports. To narrow the scope and allow meaningful analysis, we concentrated on the reports that were completed in 2020. This cut the number to 486 - 334 men and 152 women. The vast majority of the deaths in this group (470) were determined to be suicide. Most were people aged between 20 and 34. The youngest was 12, the oldest 94.

People die by suicide for complex reasons. Many have nothing to do with mental health or addiction. About 60 per cent of those who take their own lives in New Zealand each year had no interaction with a mental health and addiction service in the previous 12 months, the Government said in 2017. However, our analysis of the 2020 reports found close to 70 per cent had a history of mental health or addiction issues. Of these, three-quarters had come into contact with mental health services at some point in their lives. Only 3 per cent were waiting to access help when they died.

Reading each person’s story, it became clear there was a yawning gap between the number of people formally recorded as waiting to access help (15 of the 486 reports we analysed) and the number of people trying to get help without being recorded as such. Scores of people had wanted to access a psychologist, a Māori provider, or a specific detox programme and were turned away due to lack of capacity or long wait times. They were referred to less appropriate services instead, meaning they were not considered to be on a waitlist, but had not been able to get the right help either. Numerous coronial reports mention people being dropped from services after missing appointments or not picking up the phone. Coroners often say the urgency of someone’s distress can only be known with the benefit of hindsight. 

And this brings us to the core of the problem: These people are slipping through the cracks and are either officially or unofficially trying to get help when they die because our mental health services are nowhere near resourced enough. People working in the public and private mental health sectors told us the demand is so great, it is impossible to give everyone the help they need. Sometimes, attempts to prioritise the most urgent cases get it wrong - with devastating consequences. In a recent Association for Salaried Medical Specialists survey of the profession, one psychiatrist said:

Across the hundreds of coronial reports we read, too many stood out as tragic examples of that problem. It would be impossible to include them all in this feature. One report, into the death of Claire Woolley, details her desperate quest to access help, only to be denied it due to a lack of funding. Woolley, a woman from Katikati, northwest of Tauranga, suffered from depression and anxiety and visited her doctor repeatedly to get help. In September 2019, her husband noticed “a drastic change in her personality”, but her referral for counselling could not be processed as her general practice had used up its allocation of funding until October 1 that year. On September 23, the couple tried to engage mental health services, but were told Woolley’s counselling referral was still being processed. They called a crisis mental health helpline but were unable to get any support.

Woolley took her own life on September 29.

Anna found help before it was too late. After she was kicked out of the Kari Centre in 2017, she managed to finish high school from home with the help of a peer support person. But by 2019, her anxiety had crept back to severe levels and she had turned back to alcohol to cope with her constant panic attacks. She drank whatever she could get her hands on from her family home and what friends brought her. A typical day would involve beers, a bottle of wine and a flask of vodka.

In June 2019, Anna mustered the courage to get help. With a peer support worker in tow, she walked into Community Alcohol and Drug Services (CADS). She was referred to Auckland’s medical detox, Pitman House. She had to wait another 12 weeks, but her week-long stay there was life-changing and life-saving.

“It gave me so much. After having spent so much time not being able to leave the house or being alone, to be able to just walk around by myself, doing it by myself, was just really empowering. I felt fuzzy.

Waitematā DHB-run CADS, which covers metropolitan Auckland (from Wellsford in the north to Bombay in the south and Helensville in the west) treats about 15,000 people each year. Pitman House, one of CADS’ services, treats about 400 people a year. Currently 47 people are waiting to be admitted to Pitman House for medically-managed detox. People wait an average of 21 days for admission. Across CADS, adults wait about 25 days for a first in-person contact, and another 29 days on average to start treatment (depending on acuity). Covid-19 has caused disruptions to services and affected wait times, a Waitematā spokesperson says.

Anna has now been sober for two years. She is studying psychology at university after finishing NCEA from home and has an active social life. But she does not want to pretend she has been cured. “Wellbeing is not a destination, rather it is something that we are constantly working on, and the system doesn't reflect this.”

It is this system, not the people within it, that is the problem, Anna says. A system that is capable of helping only the most desperate people, and discharging them before they are ready to make it on their own. A system that seems almost purpose-built to fail some people. 

Anna was wary of sharing her story because she knows she is one of the lucky ones. The system favours people like her, she says, because it is built on cultural foundations that are familiar to her as a Pākehā.

She has a supportive and financially stable family. She lives in a big city, close to health services. But despite her privilege, even she has faced roadblocks and long waits accessing help. If the system is hard to navigate for her, then it is pretty much impossible for someone living in poverty, without family support, and without the cultural understanding of services built for white people.

“The sad reality is that the system is rigged in my favour.”