Holding on to hope

In 2017, the Government promised to fix systemic issues plaguing the mental health system. Years later, clinicians say there are no tangible signs of improvement. In the first part of an investigation into the impact of long waits for treatment, Ce´cile Meier talks to those holding on for hope, and the overworked clinicians scrambling to get to them in time.

Max* grabbed a chef’s knife and dragged the tip across his hand, scratching the skin. The 9-year-old said he wanted to die.

His mother, Charlotte*, had spent the previous six months trying to find mental health support privately for him in their hometown of Wa¯ naka, but was turned down at every avenue.

The knife incident happened in July. Soon afterwards, Max was registered with the Southern District Health Board’s Child and Adolescent Mental Health Service (CAMHS). Months later, they are still waiting for him to start treatment.

‘‘We spend our days managing his crises, his moods, his emotions,’’ Charlotte says. ‘‘We watch him like a hawk so that he doesn’t hurt himself. He has even asked why no-one can help him, why no-one wants to see him. He doesn’t know why he feels the way he does, and we haven’t been able to get answers.’’

Initially, the family were told the wait list was so long they could not even get a date for an assessment. If they needed help, they should ring police or the crisis helpline. CAMHS gave the family a date for a first appointment in October. They were told Max qualified for the service, but would have to wait another six months to see a psychiatrist. Charlotte does not know whether Max has ADHD, autism or a clinical mood disorder, and she won’t know until a specialist assesses him.

Max, a bright, curious and articulate child, was bullied at school when he was 8. The family lived in Auckland then. Charlotte says the behavioural issues started soon afterwards. Max became inflexible, and had repeated tantrums. He was moved to a different class but started having panic attacks. At night, he struggled to sleep. Charlotte would find him crying under his bed.

‘‘I want to knock myself out,’’ he once told Charlotte. ‘‘If I could just choke myself to death my thoughts would stop.’’

When the family sought help through their GP, the response bordered on farce. Auckland’s public mental health service said Max’s condition was not severe enough to qualify for help, and private providers turned him away because his condition was too severe.

In August last year, the family moved to Wa¯ naka in the hope a more peaceful lifestyle would help Max settle down. Initially, it worked. But at the start of this year, the tantrums, tears and panic attacks returned. Max, initially frightened by the knife incident, did it again. When his parents hid the knives he would bang his head on the door or the floor. The crisis has started to affect Max’s 8-year-old sister.

‘‘Sometimes she bawls her eyes out and says: ‘I will keep him safe, I will make sure he doesn’t play with knives.’ It is devastating for her.’’

The Southern DHB does not discuss individual patient care in the media for privacy reasons, but mental health and addictions 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, 143 children are waiting to be seen by CAMHS in the Southern DHB area. Children wait about 21 days between referral and first in-person contact (often an assessment, rather than the start of any treatment) and then another 25 days for the second face-to-face contact, Taurua says.

Wait times vary significantly between teams throughout the region though, due to a variety of reasons, including demand for the services, existing staff workloads, and any vacancies or absences, he says. The board’s mental health and addictions system is implementing recommendations from a recent review.

‘‘Our services remain committed to supporting our communities, and it is important that people in need do reach out, wherever they are,’’ Taurua says.

Charlotte has not been able to work as much as needed, which puts financial pressure on the family. Her husband is keeping it together for the kids, but it has taken a toll on him too, she says. Her mum has moved down temporarily to help out. ‘‘We are in crisis mode, and we are trying to get by. We are in a hopeless situation because we can only do so much as parents. He says he doesn’t trust us; he doesn’t trust the world any more because noone wants to help him.’’

Charlotte says Wa¯ naka lacks access to mental health support. The community has rallied in response, with people supporting one another through social media and gatherings.

‘‘How do we cope, I don’t know. Every day, we just wake up realising that this is our reality, and we need to do everything we can to get him and his sister through the day. We are absolutely exhausted.’’

Mental health staff burning out

People who work in mental health usually have a passion to help others. Turning away people in need is the opposite of what they want to do, but the resources are so limited they have no choice. The results of an Association of Salaried Medical Specialists survey of its psychiatry members was released to Stuff early for this project. They make for grim reading. More than a third of respondents reported high levels of burnout, with 41 per cent saying they always or usually end up covering other colleagues’ caseloads.

‘‘I love working with my clients/patients,’’ one said, ‘‘However, the current system is unsustainable. We do not have enough staff or resources to retain staff, the staff around me are burnt out, unmotivated, and it is painfully obvious.’’

Another said it was ‘‘very distressing to see very unwell patients who are unable to be admitted due to lack of beds’’.

Almost half the respondents said they would leave their current job if they could. In 2018, New Zealand had the lowest number of practising psychiatrists per capita of 11 countries, including Australia, the UK and Canada, the association said. Our system is heavily reliant on international medical graduates and their retention rates are poor.

‘‘Every week our small service hosts yet another farewell for a departing staff member,’’ one psychiatrist said. ‘‘I have never experienced such disillusionment in a workplace ... I enjoy the patient-contact work itself, but I think my health will deteriorate if I stay in my current job.’’ Another psychiatrist said the mental health system in New Zealand ‘‘is so broken that no matter where you work, you experience the same levels of disillusion’’.

Almost all respondents (95 per cent) reported an increase in demand for specialist mental health services over the last three years, with 87 per cent saying the service they work for is not well-resourced. ‘‘My

service has had no [staff] increase for over 13 years, but the rest of the hospital staffing has increased by 40 per cent,’’ one psychiatrist wrote.

Another said: ‘‘We now see lots of patients who come straight from prison, as forensic services are overwhelmed and they have usually been significantly traumatised in prison also. I have discharged numerous patients as soon as they achieve some tenuous stability, but new ones keep pouring in.’’

Another survey done by the Royal Australian and New Zealand College of Psychiatrists earlier this year drew some alarming responses about the state of child and youth services. ‘‘I know of inpatient units where patients are sleeping on couches, in lounges or in hallways due to the lack of beds. If that happened in oncology or cardiology, it would be front page news and be seen as a public scandal,’’ a respondent said.

‘‘Having to restrict access over the last few years has been distressing. Young people don’t tend to ask for help more than once. So suggesting that they are not ‘bad enough’ to access mental health services sets up the wrong conversation,’’ another youth psychiatrist said.

Looming over all this is Covid-19. The pandemic has made it more difficult for DHBs to recruit mental health staff from overseas. The Canterbury DHB was short of 25 mental health nurses in September, meaning its existing nurses have to work extra shifts to compensate. The vaccine mandate has further affected staffing, with Christchurch’s child and adolescent service losing more staff who refused to be vaccinated against Covid-19.

Meagan McNamara is one of them. She says the impact of further shortages will be devastating on distressed children and youth, who already face an 11-month wait with nonurgent referrals (after assessment). But Covid-19 is an easy scapegoat. The demand had been mounting long before the pandemic.

‘‘Mental health is the biggest health issue facing New Zealand outside of the pandemic, but it has been here for decades,’’ Mental Health Foundation chief executive Shaun Robinson says.

‘‘If we had ignored Covid and let it go rampant in the country, we all know our system would have been completely overwhelmed. That is what has happened with mental health; it has been ignored for decades and as people have been more prepared to ask for help, our system has been overrun.’’

Struggling to even get on the wait list

Amal*, 24, has been waiting to see a psychologist for almost a year. The young professional from Nelson, who describes herself as a ‘‘high-performing depressive’’, attempted suicide four years ago. There is a history of suicide attempts in her family.

Amal found about a dozen psychologists in the region and contacted them over and over, to no avail. Every waiting list was full. Being repeatedly turned down brought a sense of

hopelessness, she says. ‘‘If you keep asking for the same thing over and over and everyone is saying ‘no’ to you, you think: ‘What is the point of asking?’ It becomes: ‘I have to deal with this myself’, and that’s when things get scary.’’

Amal asked to use a pseudonym due to the stigma around mental health. As a person of colour born in New Zealand to Asian immigrants, she feels that stigma compounds. She has battled subtle racism her whole life. Some of her family members don’t know about her mental health struggles. ‘‘The stigma of mental health is higher in a lot of Asian cultures. There is a pressure to succeed, and you are not told to check in with yourself and see how you are doing. This adds to the Kiwi culture of being strong.’’

After her suicide attempt, she was scared. She didn’t want to confront the problem. It was two years before the lie caught up with her. Her GP prescribed antidepressants and told her to see a counsellor. The medication helped for a while, but the counselling barely scratched the surface. ‘‘Exercising and journalling and mindfulness doesn’t cut it,’’ Amal says, ‘‘I have given them a real go, but it is not enough.’’

In January, she started to deteriorate again. That was when she started calling all the clinical psychologists around Nelson. In April, she made an appointment with her new GP, but the doctor told her she couldn’t prescribe Amal medication because she did not know her well enough. The GP told Amal to go to the emergency department if she was in crisis again. She left the appointment more distressed than when she walked in.

In the four years since she tried to end her life, suicidal thoughts had never left her, but now they surged to the front of her mind. ‘‘It’s not necessarily that you want to do it, but when things are so hopeless and low and no-one is willing to help you, sometimes it seems like the only option.’’

She changed GPs and was prescribed medication once more, which has helped her function again. She goes to work, is in a relationship, and has friends. But deep down she is still unwell. ‘‘Depression isn’t something that has ever gone away. Sometimes it is big, sometimes it is small, but it’s always there.’’

She has frequent bouts of panic and struggles to connect with people around her. Sometimes she is too anxious to drive. Covering up her anxiety takes a lot of work. She feels exhausted. This colours her relationship with her partner, too. ‘‘We are getting better at recognising when I am in a low mood. Now he just takes it when I am screaming because he knows it is not me, it is my mental illness.’’

After nearly a year trying in vain to see a psychologist, Amal is not sure what to do. She understands why so many had to close their wait lists, but wishes there was a gentler process to turn people away. ‘‘How do I find out that I can see someone right now? There is no way to even be notified. How do I even know?

‘‘I feel like [the medication] is a band-aid and I don’t want to be on medication for the rest of my life. I am never going to know what is wrong and how to get better unless I talk to someone.’’

Transforming the system

It’s not a new problem. The idea that New Zealand’s mental health services were in crisis started to take hold in 2017. Staff and patients became increasingly vocal about overhauling the system and opposition political parties started to campaign on the issue. After winning power that year, Prime Minister Jacinda Ardern’s Labour-led government launched a Mental Health and Addiction Inquiry. Its report, He Ara Oranga, was released the following year, and the 2019 ‘‘Wellbeing Budget’’ sent a clear signal that mental health was finally a priority. But frontline workers today report that little has changed. If anything, they say, things are even worse.

In 2019, in response to one of He Ara Oranga’s recommendations, the Government allocated $455 million over five years for mental health and addiction services people could access at their GP or in the community. The idea was that people in mild to moderate distress could visit their doctor and see a health coach, mental health nurse or social worker directly on site.

There was no extra money for specialist services though – the ones treating the more severe cases – outside of forensic services. The hope was that catching people early would ensure many would not deteriorate to the point of needing specialist services.

The Mental Health and Wellbeing Commission’s first independent report found the service was running in only 237 general practices – 23 per cent of GPs – by June 30 this year. The roll-out for Ma¯ ori, Pasifika and youth services was even worse.

It needed ‘‘urgent and dedicated focus’’, the report said. Recruitment had been a challenge, especially for kaupapa Ma¯ ori and Pasifika services. Progress needed to continue ‘‘at pace’’ despite pandemic delays, and more funding was needed to treat severe cases in the community.

Meanwhile, demand for specialists such as clinical psychologists, psychiatrists and inpatient treatment is showing no signs of slowing down. Association of Salaried Medical Specialists executive director Sarah Dalton says funding for specialist services is set on the assumption that 3 per cent of the population will need them, but data spanning 15 years suggests the real need is closer to 5 per cent.

But Mental Health and Wellbeing Commission chair Hayden Wano is not advocating for a funding boost for specialist services that ‘‘feel they have missed out’’. He would rather invest in alternatives provided in the community, such as peer-led residential care. ‘‘What I am resisting saying is: Put money there and it will fix the problem,’’ he says.

Undermining progress even more is the chronic underinvestment that preceded the Government’s flagship $1.9b 2019 Budget announcement, Robinson says. ‘‘The Government loves to round numbers up and make it sound big, but you need to compare that $1.9b investment with the level of underfunding already existing.’’

In the 10 years to 2019, demand for services outstripped funding by 39 per cent, according to research done by the Health and Disability Commission. ‘‘That is a lot more than $1.9b. I’m not going to sugarcoat this – the investment is not enough.’’

Health Minister Andrew Little says funding is being increased, but he’s frustrated by people saying more money is needed without saying how much more. Something, though, is better than nothing. And Robinson is heartened to see at least some progress after decades of inaction. In addition to the rollout of primary services, several long-term programmes have started, including establishing a Suicide Prevention Office in 2019, repealing and replacing the Mental Health Act, and upgrading dilapidated mental health hospitals around the country.

Robinson agrees with Wano that just throwing in more money won’t solve a chronic crisis. He likens the mental health system to a stool – increasing access to services is only one of three legs. The second leg attacks the root causes of mental distress (poverty, housing, family violence, racism) and the third supports people to better look after their own wellbeing. He despairs that so little has been done on this last leg, where the most rapid gains can be made.

‘‘Everybody thinks services are the answer, but when you look at the size of the issue, you realise that you will grow old and die and turn to dust before there are enough psychologists and psychiatrists and nurses to cater for the need.’’

Yet another complicating factor is public perception. When a government throws a lot of money at a problem, people expect it to be fixed. When that doesn’t happen, frustration grows. ‘‘There is clearly a level of frustration and concern that not everything that was hoped for has been seen on the ground,’’ Wano says. ‘‘Some of it is about timing and expectation and some of it is real.’’

Transforming the system will take time and leadership. Like Robinson, Wano says staff shortages plagued mental health and addiction services long before the government committed more money, so there is a ‘‘sense of playing catch-up’’.

In September, as part of its response to He Ara Oranga, the Government released Kia Manawanui, its 10-year plan to tackle the causes of mental distress. Kia Manawanui sets out short, medium and long-term actions, but has faced criticism. Robinson says it doesn’t have any clear targets. ‘‘You can read this plan and not know what will happen next, when it will happen and who will be responsible for making it happen.’’

Robinson believes Ministry of Health officials panicked after the ‘‘big hoopla’’ made around the Wellbeing Budget in 2019 and pushed money out the door before considering how best to spend it. ‘‘I know there were officials within the Ministry of Health who were frustrated with this … piecemeal approach.’’

*Names have been changed to protect privacy.

‘We need to talk’ is a Stuff investigation into the impact of long waits to access mental health and addiction treatment. See the next part in tomorrow’s Sunday Star Times. This project was created with financial support provided by a nib Health Journalism Scholarship.

Where to get help:

Need to talk? Free call or text

1737 any time for support from a trained counsellor.

Lifeline – 0800 543 354 (0800 LIFELINE) or free text 4357 (HELP).

Depression Helpline (open 24/7) – 0800 111 757 Suicide Crisis Helpline (open 24/7) – 0508 828 865 (0508 TAUTOKO).

Youthline (open 24/7) – 0800 376 633. You can also text 234 for free between 8am and midnight, or email talk@youthline.co.nz