Through
the Maze

OUR MENTAL HEALTH JOURNEY

It’s a puzzle, it’s a maze, I try to steer through it a million ways - Dear Evan Hansen
CHAPTER THREE

We know when people are properly cared for, a community approach is the right way forward, so why is our current system said to be failing? It's not all about money, service providers say, it's more about attitudes. Katie Kenny and Laura Walters piece together the current model.

Waikato District Health Board staff have decorated the walls at their inpatient unit, the Henry Bennett Centre. Photo: Christel Yardley/Stuff

Raewyn Hughes remembers the crack of the auctioneer’s hammer as they sold her father’s farming machinery. She couldn’t see the auction from the house, on a pea crop farm just outside Napier, but she could hear it.

Years later, she would learn about her father’s history with mental illness, and how he killed himself. But overnight, aged seven, she became an extremely well-behaved child.

“I didn’t know dad’s cause of death so I didn’t know whether it was likely to happen to anyone else in the family,” says Hughes, now 63. It was.

Over several cups of coffee in her house in Christchurch, she describes her own mental illness; treatment-resistant depression and anxiety, stints in psychiatric hospitals, suicide attempts. But unlike her father, she survived, and recovered.

Her youngest son, Justin Hughes, recalls when his mother was at her worst, she was a “shell” of her former self; struggling to hold a conversation and even look him in the eye.

“When she was in hospital I would wonder, is this her forever? When she was like that, at her worst, she wasn’t the person I knew. Not my mum.”

What’s the definition of a humane society?

Nigel Fairley, general manager of mental health for Hutt Valley, Wairarapa, and Capital & Coast services, answers his own question.

“The definition of a humane society is how we treat people with mental illness, and the elderly. It’s a simple measure, and I’m not sure we’re doing it well.”

Since the closing of the old institutions, Fairley says he has seen a regression in social acceptance of mental health.

“I think there’s probably less care, less tolerance, and — I probably shouldn’t say this — but the way things are reported in the media is very negative, and very simplistic.

“If it’s true mental health services are failing then, actually, that’s an indication society is failing,” Fairley says. “And that’s where the solution has to be.”

“Having said that,” he adds with a smile, “we would welcome more money”.

A 'broken' mindset

When Claire Freeman told her psychologist she was considering joining Dignitas, an assisted suicide programme in Switzerland, he said he didn’t blame her.

“If I were in your situation, I would feel the same way,” the psychologist told her.

Freeman broke her neck in a car crash when she was 17. She’s tetraplegic, all four of her limbs are affected. In the years following the Christchurch earthquakes, while dealing with a marriage breakup, working full-time, and volunteering, Freeman was diagnosed with post-traumatic stress disorder. Twice, she tried to take her own life.

She was already struggling to cope, then urgent surgery to re-stabilise her spine went wrong, leaving her with even less movement in one of her arms. Freeman was forced to give up her job as a medical illustrator and graphic designer; one thing in her life which, she felt, gave her a sense of purpose.

Suddenly, she had a lot of free time. She joined support groups, reached out to others on social media, and started sharing her story online. She made new goals, worked on her self-esteem issues, and — for the first time in a long time — got enough sleep.

“Ironically, it took me to become more disabled in order to value what I had. I found happiness for the first time in 22 years.”

Claire Freeman says "the best thing about being human is that we can adapt". Video: George Heard/Stuff

In the open-plan living space of the house she designed for herself in Redcliffs, Christchurch, sunlight floods through floor to ceiling windows, highlighting the freckles on her fair skin. (Before the car crash, she says, her freckles were her biggest problem.) Her blue shoes match her dress, and her eyes. Taking pride in her appearance has been a big part of her recovery.

“I was blaming a lot on the injury because it’s a very easy thing to blame,” Freeman says, “but it wasn’t really my injury that was the problem, it was my distorted sense of identity, and my coping mechanisms.”

She now gets fulfilment from inspiring and helping others. Her PhD in wheelchair design, which she’s currently working on, is motivated by her research in positive self-image. She hopes to change the system by re-educating health professionals, such as the one who encouraged her to pursue assisted suicide, on the true meaning of "quality of life".

“If someone had told me I was going to have a broken neck from the age of 17, and that I was going to have to use a wheelchair, I would have said there’s no way I can deal with that. But you do. You deal with it and just try to live the best life you can. And if you have the right supports, you can live a really great life."

A ‘broken’ system?

Freeman is a living embodiment of the power of a change of mindset. If New Zealand’s mental health services are now “failing”, is it now time for another change?

Over the last 40 years or so, our health system has been moving from the old institutions to a more “community-oriented turn”, emphasising preventative medicine and personal responsibility for health. Deinstitutionalisation hasn’t been a straightforward story of progress, and headlines claiming the system is “broken” or “on a knife edge” are frequent, and hard to ignore.

One of the challenges of community care is navigating a broader range of services, says John Crawshaw, Ministry of Health director of mental health and addiction services. Fixing that is the next phase in the transformation, “but it’s the harder thing to do”.

“It’s not so much [the system] is broken, it’s much more we’ve allowed a diversification of people of who provide care,” he says.

“Which is a good thing. Which gives choice, and gives access to services people might not have otherwise provided. But that challenge is if you’re just coming into the system, how do you get navigated to the right place?”

The map of New Zealand’s mental health services looks more like a jigsaw puzzle, says Taimi Allan, chief executive of not-for-profit advocacy group Changing Minds, who’s trying to do a stocktake of services available in the upper North Island.

“There are hundreds of programmes, services, and projects in the northern region alone. A lot of them aren’t funded, or are only partially funded. There’s a worry if more funding isn’t made available [mental health workers] are going to get burnt out and that will put further stress on the system.”

But Kay Fletcher believes there’s enough money being spent on mental health. “We’re just not spending it in the right way.”

Fletcher started her career in the 1970s as an occupational therapist. From there, she worked in specialist services, and was involved in the transition from hospital-based to community care. For the last 12 years, she has been chief executive of Canterbury’s Comcare Trust, a community-based service for people with mental health and addiction issues.

Too much is spent on expensive clinical services, and not enough on low-cost community services, she says.

“Having worked across both sectors, I can see the agility of what you can do in an organisation like this with the same dollar … There’s still this thinking, that [NGOs] are some sort of small community agencies running nice little programmes. But these are professional organisations that have much more business rigor around them than any DHB-run service.

“We can’t run a deficit; we have to be a smart business as well as delivering high-quality services, because there are a lot of providers in our space and we have to compete.”

It can work. The Canterbury earthquakes were a tragic catalyst for cross-sector collaboration in the community, says Peri Renison, Canterbury DHB chief of psychiatry.

Immediately after the 2011 earthquake, which killed 185 people, NGOs and clinical services started sharing office spaces, “because ours had fallen over”, Renison says.

“Our integration with NGO and primary care has stayed really healthy, across the whole spectrum of services — people work much better, by and large.”

Stu Bigwood, CDHB director of nursing, agrees: “All that tribal stuff went out the window. We accelerated our future plan, and things that we weren’t sure we should be doing, we just stopped. All that small stuff disappeared. Some of us look back to that quite kindly.”

‘If I had a golden wish …’

Linda Smith doesn’t remember much about her third admission to a psychiatric ward, in 1990, except that she deteriorated quickly and spent a lot of time in seclusion. It was her first admission to Christchurch's Sunnyside (now Hillmorton) Hospital.

“I just remember being held down and getting a drip put into me, the feeling of the fluid going in, then everyone running out of the room,” she says, “that’s about my only memory of a four to six-week period.”

The young charge nurse didn’t want anyone to know about her diagnosis: schizoaffective, a condition that includes aspects of both schizophrenia and mood disorders.

“I was really unwell, really psychotic. I was given electroconvulsive therapy (ECT) [where an electric current is used to disrupt the brain chemistry] under the [Mental Health] Act about four or five times. I wasn’t responsive to medication.

“I was seeing rats, and I had maggots crawling up my legs. Once, when I was in a halfway house, there was a maggot eating a hole in my hand, and I could literally see through to the wall on the other side.”

For more than a decade, she was in and out of the system. After she was diagnosed with and began treatment for an autoimmune disease, she became well enough to volunteer, which then helped her return to paid work. Throughout her recovery, she was inspired by “amazing people” who shared their experiences. Now, she’s doing that for others.

“I’m leading a very different life to what I expected when I did my nursing training. But you can’t live your life in the ‘what-if’, you have to live your life in the now. This journey, it’s taught me a lot of things, and it’s made me a better person.”

We first met at a symposium on the physical health of tāngata whai ora (mental health service users), where Smith was attending in her capacity as a consumer adviser for specialist mental health services. She’s passionate about the Equally Well movement; a group of organisations working to improve the physical health of people with mental health and addiction issues. This group has a shorter life expectancy, and higher rates of cancer, diabetes, cardiovascular disease, metabolic syndrome, and oral health issues, than the general population, Smith explains.

“Not only are these people marginalised by having a mental illness, they’re marginalised by their medication, and additional physical health problems.”

While there's been good progress, “stigma is still rife around mental illness”, she says.

“If I had a golden wish, it would be that everyone who has a mental illness can talk about it the way cancer has become talked about.”

‘A catch-all for society’s woes’

In a raised corner of the secure outdoor courtyard at Henry Rongomau Bennett Centre is a sprawling pumpkin plant. Among the tangled mess are developing fruits in varying shades of buff. One pumpkin is bigger than the others. Someone else has already noticed this — someone with more time, who has carved into the thick skin: “Leave me alone.”

The 110-bed unit, part of the Waiora Waikato Hospital Campus, provides inpatient care for those experiencing mental illness. Waikato DHB announced in April 2016 that it would be replaced — chief executive Nigel Murray at the time described the building as “sub-optimal”.

The nurses showing us around have done what they can to brighten the place; the walls are colourful with artwork, by former residents, residents, and staff. The living room is full of activity, with groups playing games, chatting, laughing. Some sit alone, following us with their eyes, or staring into space.

A new building doesn’t mean a bigger building, says Derek Wright, Waikato DHB executive director of mental health and addiction services. He hopes the future inpatient unit will actually be smaller, with more of the budget going towards community services.“The current model is fundamentally flawed,” says Wright, who started his career in Scotland as a mental health nurse.

“Yes, money is important, but it’s not going to solve the problem. The problem being that we don’t have a model fit for this century.

“What people are looking to do is tinker — and that’s what we’ve been doing since we closed Tokanui [Hospital]. But this is about a fundamental re-think of how we provide services, and also a fundamental re-education of the community.”

Mental health has become a “catch-all for society's woes”, he says. “Society has made us the default, and to be honest the media has made us the default.”

He apologises for pointing as he says that. But it’s clear his anger is borne of frustration. The kind of frustration that comes from being asked to do an impossible job, then being blamed when things go wrong.

“We spend our lives dealing with this influx of people who come in with a problem that could be dealt with in community care,” he says. “We employ highly skilled clinicians who might spend only 10 or 20 per cent of the working week actually working at the top of their scope of practice.”

Over the past decade, demand for secondary mental health and addiction services has increased from 2.3 per cent of the population, to 3.6 per cent of the population, or from around 96,000 people to almost 168,000 people.

Rees Tapsell, the DHB’s director of clinical services for mental health and addiction, agrees with Wright.

“We commonly end up feeling responsible, and society sees us as being responsible, for responding largely to all the kind of ills and woes of the world.

Rees Tapsell - Waikato DHB director of clinical services for mental health

“In the 25 years I’ve been practising, there always used to be an element of that, but it’s become a much more significant element of what we’re required to respond to. Not just people with serious mental illness, but a large number of people who are simply struggling to fit into society and to function.”

There’s no doubt modern life is tough, he says, with young people in particular struggling to find employment and accommodation. On top of that, they’re often living away from family and don’t know their neighbours.

“The problem is we live in a world that is so much more about you the individual, other people don’t see themselves as having a role in helping you. Even family members.”

A few more knocks — a break up, a developing alcohol or drug addiction, a particularly rough encounter on a Saturday night — and they’re knocking on the door of mental health services.

“If we’re to avoid ending up back where we were, where we have a whole lot of people who don’t need to be in mental health services getting institutionalised, we actually have to have much more of a community capacity for dealing with what are largely social ills.”

When so much of society’s burden is placed on one sector, things go wrong. And when they do, Mental Health Foundation chief executive Shaun Robinson, says: “Mental health does become the default bogeyman.”

Real-time feedback collected by the Health and Disability Commissioner shows more than 80 per cent of consumers would recommend mental health services. Yet, says John Crawshaw, “everyone is focused on the fear aspect of doing something wrong”.

“Sensational” headlines move the debate from “how to improve services, to actually blaming the people who have mental health problems, or the people who work very hard and have to make very difficult judgment calls”.

Brad Strong, Southern DHB mental health medical director, says this tendency has created a risk-averse environment that hinders innovation and change. It’s a daily struggle to balance a patient’s safety with their autonomy, he says.

“It was much easier to keep people safe in Cherry Farm [the former psychiatric hospital in Dunedin], but we’ve chosen, as a society, a different — better — model. There’s always that tension, but we have to take some risk if people are going to be able to live independent, meaningful lives.”

A cup of tea, a sympathetic ear

Pat Macaulay, a co-ordinator for Otago Rural Support Trust, knows Strath Taieri like the back of her hand. She grew up on a sheep farm in the hills of West Otago before studying and working in Dunedin. After getting married in the early 1970s, she lived with her husband on a sheep and beef property.

It’s “harsh country”, she says — the home of the stereotypical southern man, where self-reliance and stoicism are huge barriers to asking for help. But things are changing.

“Five years ago, asking for help was just a no-no. Farmers are very proud people. They’ll say they’ll manage, as they straighten their shoulders.”

Macaulay visits people who have called the helpline, or, more commonly, have been referred by other rural professionals. The trust offers free, confidential support and guidance. Including the Otago branch, there are 14 branches across the country, each run by local people familiar with the area and agribusiness.

Every case is different, but they all require “a damn good listener”, Macaulay says. “I’m very good at drinking cups of tea.”

Convincing men in particular to accept they need to visit a doctor can be difficult.

“About three to four years ago, we had a huge snowstorm, and from then on farmers have been more ready to say, ‘hey, I need to talk to somebody, I need help’.

“I think people such as Sir John Kirwan, Mike King, Doug Avery, who have put their hands up and said, I’ve been there — that’s really helped. There’s nothing wrong with putting your hand up and asking for help.”

It’s not only in Otago that attitudes are shifting. “Most families in New Zealand can tell you a story about mental health,” Health Minister Jonathan Coleman says.

“I think people understand now it’s an issue. What we need to work on is destigmatising mental illness, making sure we can intervene much earlier, and focusing on mental wellness and trying to improve things in terms of access to the community.”

Since his days as a medical student, Coleman has witnessed the evolution of the model of care. In another 10 or 20 years, it will be different again, he says.

“You never get to the point where you’ve got the perfect system.”

A story of redemption

Raewyn Hughes was 19, in her second year of university in Palmerston North, when she started experiencing depression and anxiety. She was horrified when her family doctor referred her to a psychiatrist. It was the early 1970s, and she didn’t want to tell anyone. “I learnt to live with it. It was all I knew.”

After changing courses to study teaching in Canterbury, she got her qualifications. Shortly afterwards, she married, and had three sons. But worsening symptoms meant she went on antidepressants for the first time. They helped, but not enough. While she had a variety of jobs related to teaching, she couldn’t find full-time work.

“That’s what really became the point of spiralling down: I couldn’t get work.”

In the late 1990s, she was suicidal, and admitted to hospital for the first time. Back then, she says, the system was “rigid and regimented”. Her psychiatrist was distant, and didn’t like Hughes asking questions. Even after she was discharged, the depression didn’t lift, and she struggled to get decent work.

But the second time she was admitted to hospital, more than a decade later, her experience was “significantly better”.

Since then, she’s had the same case manager, which has made a “huge difference” in her recovery, she says. He’s English, and enjoys tramping. Hughes enjoys getting to know him.

“My psychiatrist was the same, you could have a joke with her."

“The fact they allowed you to see a bit about them, they ceased to be just medical practitioners, they became humans, and I learnt to trust them.”

Raewyn Hughes

Without that trust, it’s unlikely she would have accepted her diagnosis of bipolar disorder, or the recommended treatments of medication and ECT.

“The stigma around ECT is huge,” she says, “and I’ve become a poster girl for it.”

She takes any opportunity to demystify the procedure, which has come a long way from the horror stories of what was colloquially called “electric shock treatment”. For Hughes, the therapy resulted in “instant improvement”, she says.

“It takes more time to put you under the anesthetic than it does to do the procedure. I just come out of it and get up and have a cup of tea. The worst bit is they put a sticky goo on the electrodes which you have to wash out of your hair the next morning. I mean, that’s my experience, and obviously they’ve got me on the right dosage.”

Today, life is pretty good. She works part-time, has her own place, and finds it easier to relate to her boys. She’s always been very open with them about the death of her father, and her own struggles.

Justin Hughes believes in inter-generational trauma. Photo: Monique Ford\/Stuff

Justin Hughes believes in inter-generational trauma. Photo: Monique Ford/Stuff

“I think I was about eight when I found out how granddad died,” Justin Hughes says. “I obviously couldn’t absorb it all, but later, I could see how much it plays out in my mum’s life.”

He sees his mother’s story as one of “redemption”.

“I never met my granddad, but his death affected me in that it affected my grandmother, and my mother, and I’m her son. I feel it’s good to acknowledge your history, your past, but that doesn’t mean it determines your trajectory.”

Continue reading to Chapter 4

"If you know the way, light it for others"

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 talk@youthline.co.nz

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 info@mentalhealth.org.nz) 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

Through the Maze
OUR MENTAL HEALTH JOURNEY
  • CHAPTER ONE
    ‘Out of sight, out of mind’
    How institutionalism affected those locked away
  • CHAPTER TWO
    ‘Take us seriously, and above all listen’
    From asylums to community care: The Mason Report and the Listening Forum
  • CHAPTER THREE
    ‘It’s a puzzle, it’s a maze’
    Our ’broken’ mental health system, our ‘broken’ attitudes
  • CHAPTER FOUR
    ‘If you know the way, light it for others’
    What should the future of mental health care look like?