OUR MENTAL HEALTH JOURNEY
"If you know the way, light it for others" - Unknown
Justin Hughes believes in inter-generational trauma. The transformation of mental health services hasn’t been a straightforward journey, but Hughes is doing his part to better it. Katie Kenny and Laura Walters ask what the future of care should look like.
Justin Hughes' mother was affected deeply by her father’s suicide. In turn, the 27-year-old was affected by his mother’s suicide attempts. Something — he’s not sure exactly what — lived inside his grandfather, and lives in his mother, and in him. It’s been a constant concern since he was a boy.
Both his parents have experienced depression. When his mother was at her worst, in and out of the hospital, Hughes worried he had lost her — if not to suicide, then to her illness.
“I could see it coming,” Hughes says. “It felt like no one else was seeing what I was seeing. Then, when it happened, I thought, 'I saw this, why did nobody do anything? What could we have done to prevent this?”
It took a long time before he realised the answer is often: nothing.
“There’s only so much you can do. You can support someone through but you can’t make decisions for them. Sometimes you just have to watch them fall, and be there to pick them up again.”
The last time there was such a groundswell of concern over mental health was in 1995, when the Government commissioned a national inquiry into services around the country.
“It seems to me that the atmosphere then was very similar to the one we have today,” says former Judge Ken Mason, who headed the inquiry.
Depression is the leading cause of disability worldwide, according to the World Health Organisation. And around half of Kiwis will experience a mental illness and/or addiction at some time in their lives, with one in five people affected within one year, states the New Zealand Mental Health Survey.
Auckland-based psychologist Simon Judkins, chair of the Early Intervention in Psychosis Society, says the system is in crisis, and, partly owing to an ageing workforce, “it's about to get 10 times worse".
“There does need to be a radical revamp [of services] but it needs to be done not through the lens of the economy, which most of these reviews are done, but looking at what works best for this population.”
Campaigns such as the Mental Health Foundation’s Like Minds Like Mine have come a long way towards normalising mental illness, particularly mood disorders such as depression and anxiety. But Judkins is hoping more will be done to educate the public around more severe experiences of mental distress, such as psychosis.
“Treating it like cancer, I guess.”
Psychosis in general terms is a loss of contact with reality, Judkins explains. It can affect how a person thinks, feels, and experiences the world. Psychosis isn’t always considered a mental illness — only when it causes distress and dysfunction. While most research says about 3 per cent of the population will experience a psychotic episode during their lifetime, Judkins says that figure is closer to 10 per cent.
His team, made up of psychiatrists, psychologists, nurses, occupational therapists, and social workers, will do whatever it takes to keep clients engaged, sometimes for years, even if it means meeting clients on the basketball court, or at the gym.
“If someone doesn’t turn up for an appointment, I’ll stalk them,” Judkins says.
The team is well resourced, colleagues in the mental health sector note with jealousy. Part of the reason for that is evidence points to a critical period during which intervention gets much better outcomes with reduced risk.
One young man, who wants to remain anonymous (“I know people are getting better about removing stigma but I just want to be careful”) was 22 when he first experienced psychosis. He was an athlete who had represented New Zealand in multisport, but at the time was a business owner and surveyor in Queenstown. He started having panic attacks and experiencing delusions. He credits early intervention services in Dunedin with saving his life.
“I honestly didn’t think it was going to get better.”
But he did get better. Ten years later, he’s still in touch with mental health services in Christchurch, where he works for a small surveying consultancy.
“It made me realise that it can happen to anyone,” he says.
Early intervention is just one area of mental health where New Zealand was a world leader, until recently. But mental health is no longer a health priority, Dr Sarah Gordon says.
Gordon has lived with a serious mental illness since she was 17. After completing four degrees — one a PhD in psychological medicine — she has been using her experience to advocate for improved mental health services and societal perceptions.
“What we’ve lost in New Zealand, which are key things, are leadership and advocacy.”
For years, the World Health Organization has been warning countries to invest in mental health.
“New Zealand took that on quite early and we were really strong and we were recognised. And then, we shut it all down. Our Mental Health Commission was disestablished as other countries were establishing theirs. Other parts of the world are now leading what we were leading before.”
Despite this, around the country are innovative examples of what the future of mental health could look like: groundbreaking research, employment opportunities, and world-first public health campaigns.
In the basement of a building across from Dunedin’s public hospital is a sterile room with a large comfy chair and IV equipment. Professor Paul Glue is helping conduct the world’s largest controlled trial testing ketamine as an antidepressant. Yes, ketamine — the horse tranquilizer, the powerful anaesthetic, the illicit narcotic. Also the most promising thing to happen to treatment-resistant depression in a long time.
The history of psychopharmacology is more indebted to serendipity than most areas of medicine. Between the late 1940s and late 1950s, effective drug treatments were discovered for bipolar affective disorder, depression, schizophrenia, and anxiety. Having largely been discovered by mistake, however, they lacked a theory that accounted for why they worked — or, in many cases, didn’t. Since then, there have been few advances.
“We’re still hoping for good fortune to strike,” says Glue, a psychiatrist in Otago University’s department of Psychological Medicine.
Two or three times daily, Glue gets emails from people saying they’re chronically depressed and desperate to get involved in a clinical trial. “It’s pretty heart-breaking stuff.”
Private ketamine clinics have popped up all over the United States, United Kingdom, and parts of Australia, but not yet here. Money isn’t a barrier; an ampial of 200mg costs about $10, plus a few cents for a syringe, cotton wool, a needle, and clinic time required as the drug has to be given under supervision. But ketamine worries drug companies — it’s been around for almost 60 years, so there’s little patent protection and as a result, it's not a lucrative option for big pharma.
Upstairs, in Glue’s office, his phone is ringing. He’s on call this afternoon, and a doctor is asking for his advice on a difficult patient. Pushing his glasses up his nose, Glue reassures the doctor, saying he’ll be there soon. Non-compliance isn’t unusual in his line of work.
“It would be nice to have some sort of scanning or imaging or genetic or biochemical test for a number of different disorders. We don’t have that. We diagnose most people by asking what’s going on inside their head. That’s terrible."
Still, he says, there have been big changes. Conditions previously thought of as incurable are now very manageable.
“It’s different from cancer, in a way. People are happy for you to take a bit of the tumour away. And then you look at genetic markers and say, we’re going to use this treatment as opposed to this one because of what your tumour looks like. And, it would be fabulous to have the same thing for psychiatry. Just, it’s on the to-do list.”
Twenty years ago, Dr Shyamala Nada-Raja of Dunedin’s School of Medicine was a young researcher attending a conference on suicide prevention in Adelaide. Suddenly, the afternoon session was overrun by suicide survivors and their families. Nada-Raja sat up in her seat as the survivors spoke of their disappointment with the academic community.
“It made a real impression on a lot of us who were there,” she says. “I was just starting out in the field and I thought, OK we read all these papers and all that, but have we actually spoken to the people who have gone through it?
“I think now it’s almost mandatory to do that kind of work. At the end of the day, the research has to go back and help that group and if they don’t understand what you’re doing, what’s the point?”
That question has shaped her career. Now, she specialises in figuring out how to use new media to help suicide prevention and improve wellbeing and resilience. But technology is an enabler of face-to-face connection, she says, not a substitute. And it's the content that matters, not the tool.
"It comes down to connections, relationships, we have to get those right."
Research shows social isolation increases the risk of suicidal behaviour. Therefore, in trialling e-therapies, her team tries to build a sense of community. That on its own has shown to make a big difference in people’s lives. In fact, altruism was the top reason people wanted to take part in the study in the first place: not to heal themselves, but to ease others’ suffering.
A sense of community: that’s why Manny Apiata wakes up at 7.30am and goes to work on a 10-acre block of land in Ardmore, south of Auckland. While it looks like any other farm, this one is unique in that it provides transitional employment and education opportunities for people with experience of mental illness or addictions. And it’s certified organic.
Apiata has been working on Hamlin Road Farm for two and a half years. He entered the mental health system in 1986 and spent time in Lake Alice Hospital and the Mason Clinic.
“It’s not just about working for Hamlin Road, it’s about working alongside the clientele. It doesn’t matter if you’re Mongrel Mob or Head Hunters or whatever, when we’re in here we’re Kaupapa Māori, we are one people. In here, we work together.”
The farm was established in 2002 by Pathways, a national provider of community-based mental health services.
“I’ve heard a lot, ‘they should’ve never closed the big institutions down,’ and I’ll argue that point with anybody, any day of the week, because I see why they should,” says Sarah Hewitt, who works as a team coach on the farm.
The clay soil isn’t fertile, but they have persisted. When seedlings fail to thrive the employees roll up their sleeves, rework the land, and start again. In nine large outside garden beds, six shade houses, and a citrus orchard and propagation house, there’s coriander, spinach, lettuce, kale, garlic, pak choi, beans, beetroot, fennel.
While the students here do classes and work towards government-funded NZQA qualifications in horticulture, the trainees get paid.
Jarrod Wikeepa, 44, has been in the mental health system for 30 years owing to addiction and head injuries. Until six months ago, when he picked up a day of work at week at Hamlin Road Farm, he was unemployed. It’s his day off today, but he wanted to come in to talk. He recalls getting the phone call offering him five and a half hours of work per week. Paid work.
“I was over the moon when I got that call. I hadn’t been working for about 10 years.
“I enjoy it, the company, being part of a family. My life’s awesome. I don’t know what I would be doing if I wasn’t here.”
Another city, another community. Following the Canterbury earthquakes in 2010 and in 2011, the government invested in the mental wellness of those affected. It brought together a group of people around a table; a psychosocial committee focused on social recovery.
“People didn’t want the campaign to look like it was designed by some bureaucrat in Wellington,” campaign manager Sue Turner says. “That was a direct quote.”
The earthquakes led to an upturn in people experiencing mental distress — a 43 per cent increase in adults and 69 per cent in child and youth, according to Canterbury DHB. While the increased demand has overloaded a DHB struggling to find money and resources, it's also forced innovative solutions.
The result was All Right?, a campaign which has exceeded expectations nationally and internationally. The question mark is important, Tuner says: “It’s creating an opportunity for people to be reflective — we’re saying it’s OK to take some time out to ask how’s your body, how’s your head?”
Evaluations in 2016 found more than three-quarters of Cantabrians were aware of the campaign, which is helping unlock people’s inherent wisdom around wellbeing and, on a broader scale, strengthening communities.
It was a success, helped by a lot of cash, relatively speaking — $750,000 in the first year (2012) and then $1 million each year after through to June, 2019. But it’s a shame it takes a fatal disaster to free up political will and funds, Turner says.
“That disaster basically activated a budget for us that, you know, would never have otherwise happened,” Turner says.
“Why doesn’t Wellington have a wellbeing programme operating now? We know there are going to be more disasters, so why not do the groundwork using our recipe?”
Calls to review the system have been gathering steam during the past year, as stories linked to mental health and suicide continue to dominate the headlines. But Health Minister Jonathan Coleman told us he isn't interested in commissioning an official inquiry.
This isn't a uniquely Kiwi problem, Coleman says — countries across the globe are in the process of figuring out how to deal with increasing mental health demands.
And while opposition parties are keen for a review for "political reasons", Coleman says, "we could spend a lot of time on a review rather than fixing the problems which we already know exist".
New Zealand needs to focus more on resilience and wellbeing education, as well as making sure people can access services "before things spiral out of control", he says. "That's going to be the next stage."
But Mental Health Commissioner Kevin Allan says it's time to take stock. (The Mental Health Commission was disestablished in 2012, but the commissioner’s role was moved into the Health and Disabilities Commission.) The government’s service development plan for mental health and addiction services, Rising to the Challenge, comes to an end this year.
“Do we need a review? Yes; a review, stock take, plan of action, call it what you like … It’s time we actually had a look at where that plan got us and where we need to go.”
Although Allan’s background is in law, as a student he spent about a year working as a hospital aide at Porirua Hospital.
“From that time through to now, we’ve come a long way for the better. There’s been really good progress — but that’s not the say challenges aren’t there, because they are.”
Justin Hughes doesn’t dwell on what he describes as his “sob story”. At high school he didn’t talk to many people about his parents’ divorce, or his mother being in and out of the hospital. A mental illness is different from a physical illness, he explains, in that it’s not necessarily getting better or getting worse — it’s just ongoing. Growing up, he wanted to escape that.
“It’s one of those things where it’s hard to admit even to yourself how much these things have hurt you, knowing at the same time it’s no one's fault.
“I don’t blame my mum for anything.”
Talking about his personal experience with depression and anxiety, he says: “I have comfortably come to terms with it as something I’ll deal with for the rest of my life.”
He’s had to learn how to talk about his experiences in a way that’s helpful without succumbing to negativity. In a way that allows him to hold down jobs and work towards a master’s degree. He’s willing to share, he says, because “one thing people who go through this hate the most is that feeling of being misunderstood”.
In one breath Hughes will tell you he had eggs for breakfast, and in the next he’ll tell you his mother tried to kill herself.
“That’s probably the hardest thing to ever actually say because those words mean a huge amount: yes, my mum tried to kill herself. You’re stating facts. It’s like saying the sky is blue. But I can’t describe the story behind those words. What does the sky mean to you, or anyone?”
“I just hope that as a society, as individuals, we can learn to see beyond the everyday.”
When was the last time you asked someone how they were, and meant it? When was the last time someone asked you how you were, and you were honest?
“Now, with my friends, even when I’m going through other stuff, I say, what’s going on? How are things? That’s the hard thing — really stopping and talking to people.”
Where to get help
Need to talk? 1737: free call or text 1737 any time for support from a trained counsellor
Lifeline: 0800 543 354
Youthline: 0800 376 633 free text 234 or email firstname.lastname@example.org
Samaritans: 0800 726 666
Healthline: 0800 611 116
Depression helpline: 0800 111 757 or free text 4202 or www.depression.org.nz
The Lowdown: www.thelowdown.co.nz or free text 5626
SPARX.org.nz: online e-therapy tool
OUTline NZ: 0800 688 5463 for confidential telephone support for the LGBTQI+ family, as well as their friends and families
Note: all helplines are available 24/7. For further information about supports available to you, contact the Mental Health Foundation's free resource and information service (09 623 4812 or email@example.com) during business hours.
This project was made possible by funding from the Frozen Funds Charitable Trust, through the Mental Health Foundation.
Words: Katie Kenny and Laura Walters
Illustration and layout: Jemma Cheer
Visuals editor: Alex Liu
Copy editor: Joanne Butcher