Through
the Maze

OUR MENTAL HEALTH JOURNEY

"Take us seriously, and above all listen"- Mary O’Hagan
CHAPTER TWO

Closing the psychiatric hospitals might have been the right thing to do, but that didn’t make it popular. Retired Judge Ken Mason tells Laura Walters and Katie Kenny what happened when he was tasked with leading the inquiry to end all inquiries.

“In the latter part of 1995 two young men in possession of firearms were shot dead by Police,” the Mason Report begins.

“Yet again the media, talk back hosts and Parliament debated the quantity and quality of mental health services, and in particular the issues of dangerousness, public safety and the inaccessibility of services… The term ‘ex-psychiatric patient’ assumed a place of notoriety on the airwaves.”

It was the latest in a string of cases catching the public attention, each involving someone who had been in contact with mental health services.

“I remember it very well… mental health was associated with dangerousness, it’s as simple as that. And that was wrong,” says retired judge Ken Mason, the man credited with changing the mental health landscape.

Mason sits in his Nelson home with extensive notes on his lap as he talks about the events that led to the Government’s commission of what became known as The Mason Inquiry — an inquiry that produced three simple-but-significant changes relating to stigma, leadership and funding.

The late 80s and through the 90s was a time of significant change for mental health. The closing of the last hospitals was in full swing and people were moving into community care — some were placed in special boarding houses and residences, some were sent home. What came to be known as deinstitutionalisation was the first major shift in service delivery since the opening of the asylums more than 100 years earlier.

The institutions had “depersonalised and dehumanised” patients, says Ministry of Health director of mental health services John Crawshaw.

Crawshaw had started his career in the old institutions, working as a nurse aide at Christchurch’s Sunnyside Hospital to put himself through medical school. He then spent time at Dunedin’s Cherry Farm before leading deinstitutionalisation at Porirua Psychiatric Hospital.

“We knew locking people away in the big psychiatric hospitals stripped them of their rights, their dignity and their ability to recover, so we once again welcomed people with mental health issues back into the community.”

New Zealand closed the institutions — following in the footsteps of places like the UK. By the early-2000s, the last ones were shut.

But just because those at the top knew it was the right thing to do, didn’t mean the public liked it.

A study on the resettlement of Sunnyside patients with acute mental illness shows community care was still a controversial idea in 1992.

“Critics of deinstitutionalisation have accused its practitioners of causing homelessness, increasing the levels of danger for both the patient and the community and raising the population of gaols.”

The research — titled From hospital to community: a follow up of community placement of the long term mentally ill — found 90 per cent of respondents reported satisfaction with their new community living arrangements.

But lead author Marjorie Macmillan says she wasn’t so sure.

“This is really difficult… I mean, lots of people say their lives are better and I think, well your life looks like s... to me.”

More than 50 per cent didn’t have contact with friends outside the community care residence and contact with neighbours was described as “generally poor”.

“Despite generally satisfactory contact with other residents, loneliness was a significant issue,” the research says.

When Johanna Beckett was locked up in Seacliff Lunatic Asylum in 1890 she was shunned by her husband and the wider community. More than 100 years later, New Zealand’s attitude towards some of society’s most vulnerable remained frighteningly similar.

During that period, Crawshaw visited “just about every single rotary or community neighbourhood group” to try to persuade them it was safe to have mentally ill people in the community.

“That seems strange now but I spent a lot of my time meeting with groups and demythologising fears they had.”

Crawshaw sits in his Wellington office, visibly tense at first. But as he talks about his past a small smile creeps across his face. It's clear Crawshaw cares about the people he's tasked with helping. And he's proud of the progress made during the era of deinstitutionalisation.

As public fear grew between 1987 and 1996, 67 inquiries into the delivery of mental health services were carried out. But horror stories of community care continued to emerge — some put this down to the lack of time and money put into the transformation of services. Meaningful shifts in attitude also remained elusive.

When fear in the community reached fever pitch in the mid-90s, Mason's experience with the mental health system made him the obvious choice to head the inquiry to end all inquiries.

He'd previously worked alongside patients and staff at Auckland's mental health hospitals as a South Auckland district court judge, and in the 1980s, he led a separate mental health review. This one focused on forensic services and led to the opening of a forensic psychiatric unit on Auckland’s Unitec campus.

Mason wanted the 1996 inquiry to be different. He wanted the recommendations to lead to action, and he wanted the public to be part of the discussion.

“Above all else, we sat down and we said that we’ve got to be scrupulously honest in all our findings...

“We knew at that early stage that we were going to deal with issues relating to the delivery of mental health services, which might make us unpopular in some quarters. We weren’t really concerned about that.

“We said if that’s the case so be it. If praise is warranted, then let’s be praiseworthy. But if condemnation is warranted then we decided we wouldn’t hesitate to say so.”

The panel listened to stories of “families torn apart by having a seriously unstable person with major mental illness in their midst”.

It heard from a father who estimated spending more than $200,000 over 30 years to support his mentally ill daughter, left with no retirement savings and “nothing to look forward to except constant worry about her future”.

It listened to a relative of a mentally ill mother who was “socially isolated, filthy, totally alone, living out of a public toilet” before she was given medical care, and a doctor who likened the present situation in psychiatry to that of a surgeon operating without a theatre: “It can be done, but it is not particularly pleasant and probably is quite dangerous for the patient.”

“You feel for the people who are writing to you,” Mason says. “I think if you become too involved in the sadness of it all... you then form an almost irresistible concern to make sure someone pays for it. And that’s wrong."

“You’ve got to make an objective judgment about it and if there's a problem, then try and recommend a solution.”

Ken Mason

Until this time, the Government had relied on a mental health strategy which was “absolutely going nowhere”, he says.

“It seemed to us that a vision statement without implementation was absolutely useless.”

Using plain English, the panel made clear recommendations to tackle the issues of stigma, a lack of independent leadership, and a lack of funding.

The changes may have seemed simple but they made New Zealand a world leader in mental health.

Mental Health Foundation chief executive Shaun Robinson describes the inquiry as “a real watershed moment”.

In the end, Mason believes they achieved what they set out to do. “The real heroes, if there are heroes in this sort of thing, are the people who give the time and trouble to come along and tell us stories… It’s very difficult for someone to stand in front of three people who they don’t know and say this is what happened to me, or this is what happened to my daughter…

“These people allowed us to intrude into their lives, and that’s what we did. And so if you’re going to intrude into the life of some other person, then I think you’re under an obligation to try and alleviate some of the concerns that they have.”

He pauses, “you’re very kind to say it’s a legacy, but I don’t see it that way”.

The report recommended initiating a public awareness campaign to deal with stigma. What resulted was the world’s first national anti-stigma campaign: Like Minds, Like Mine.

John Kirwan takes part in an anti-stigma campaign from Like Minds, Like Mine. Photo:  Like Minds, Like Mine\/Facebook

John Kirwan takes part in an anti-stigma campaign from Like Minds, Like Mine. Photo:  Like Minds, Like Mine/Facebook

The panel also recommended mental health funding be ring-fenced, meaning health boards cannot spend less than the previous year. This stipulation has remained in place since. In Budget 2017, the Government pledged a further $224 million over four years to mental health. But between population growth and staggering growth in demand, many say the funding increases haven't kept pace.

Former Health Minister and Finance Minister David Caygill says there always has been, and always will be, calls for further funding and resources. Mental health news headlines frequently feature the words “under-resourced” and “under-funded”.

But knowing how much the Government should be spending is not straightforward.

“Given that we’re talking about a public health system that’s fundamentally funded by the taxpayer… there’s essentially no end to what people can reasonably demand from a service they’re not paying for.”

There’s an idea that there’s a ‘holy grail of health’, he says.

“If only the government would spend enough then all the problems would be fixed. That’s entirely wrong.”

The minister from David Lange's fourth Labour Government (1984-1990) chooses his words carefully as he sits in the Christchurch cafe just a stone’s throw from his Merivale home.

It’s less about absolute dollars and more about political priorities, he says.

As the 1990s wore on and more people left the institutions, horrific stories of abuse emerged. Some of the most shocking accounts came from Lake Alice Hospital, situated on an isolated patch of farmland half an hour north of Palmerston North.

Patients spoke of Selwyn Leeks, the former medical superintendent, using electroconvulsive therapy (ECT) — where an electric shock is used to disrupt the brain chemistry — as punishment, without anesthetic, and sometimes on adolescents’ legs and genitals during the 1970s.

In 2001, the Government paid out more than $10 million in compensation and apologised to 180 people.

Others, from other institutions, started to tell similar stories. But not everyone got an inquiry, apology and payout.

Instead, the Government established what came to be known as the Listening Forum, a confidential service where former psychiatric hospital patients could go to tell their stories.

The forum, which launched in 2005, met with almost 500 people.

Themes emerged: unsanitary and overcrowded conditions, lack of communication, physical violence, sexual misconduct, fear and humiliation, inadequate complaints processes, and a lack of support on discharge.

Patients told the panel about the “demeaning admissions process”: they were stripped naked, and their clothes and belongings were taken away, according to the forum’s final report from 2007.

They gave an account of a period in which patients were viewed as people who were not expected to get well or to stay in touch with their families and where there was a societal attitude of “out of sight, out of mind.”

The former patients asked for a public acknowledgment or apology showing the Government understood they’d had “experiences that were deeply humiliating and demeaning, often taking a lifelong toll”. But the apology never came.

The forum cost the Government just $1.7m.

Wellington lawyer Sonja Cooper, who's spent more than 10 years fighting for former psychiatric patients, says the forum process was “vacuous”.

“I don’t diminish the work of those on the forum, I respect them. But as a means of resolving disputes and the claims, no.”

Sonja Cooper

The Government needed to put its money where its mouth was, she says.

“An apology that’s not accompanied by anything else is meaningless to me. Well, it’s less meaningful.”

In 2002, Cooper was a district inspector of mental health for the Wellington region.

Patients told her about growing up in institutions, often as state wards, and of the abuses they suffered. Cooper, who was also a practicing lawyer at the time, couldn’t take on Wellington-based cases because it would be a conflict of interest, but she could represent people outside the region and those no longer in care.

Soon she had hundreds of clients.

In the end, Cooper settled 320 historic abuse claims of former psychiatric hospital patients out of court. They each received a bit of money and a letter of apology.

The Government tried to block them at every turn - at the High Court, Court of Appeal and the Supreme Court.

Newspaper cartoons showing the state’s approach in an unfavourable light are taped to the glass wall of the conference room in Cooper’s Wellington office.

Her gaze is sharp from behind her cat-eye glasses and her sarcastic wit is cutting as she talks about “paternalistic” mental health legislation, which continues to influence society’s approach to mental health.

“The 1992 act suddenly actually expressed that mental health patients have rights. What a fascinating concept,” she says.

Cooper would be a formidable foe. It’s understandable why the Crown Health Financing Agency, the organisation responsible for settling the 320 claims, unflatteringly referred to her as “a dragon with three heads”.

That fierceness is apparent when she talks about what drives her to keep fighting for historic abuse sufferers.

“At the end of the day, our job is to assist this group of clients — all of them — to access justice.

“And this is a group of clients that has been down-trodden and disbelieved and silenced and accessing justice has been impossible.”

For these people, it’s about being believed.

“That’s a big part of the role we play, we believe them and we advocate for them and we tell their story where nobody else has been prepared to do it.”

Even after the last institutions had closed a paternalistic view prevailed. Former patients often weren't believed, their voices continued to be silenced by a population that refused to believe these types of abuses could take place in New Zealand, Cooper says.

The last recommendation of the Mason Report was to establish a Mental Health Commissioner — an independent leader to carry the torch.

Mary O’Hagan was New Zealand’s first and last mad Mental Health Commissioner.

The confident talker with a distinctive white bob started using mental health services during her first year of university.

“In those days it was a pills and pillow service,” she says.

O’Hagan was in a “bleak place” and went to services expecting respect and wise counsel. She didn’t get that.

"On one side of the hospital door I was a promising young citizen and on the other I was a psychological patient. There is a huge plummet in social status when that happens.”

The next thing to happen was a stripping of her dreams.

“They said: ‘Mary, you’ve got a serious mental health problem, it will continue to affect you for the rest of your life, you really need to lower your horizons for your career because you’ll never be able to work full time on a consistent basis’.”

O’Hagan looks up and grins.

“One of the great pleasures of my life has been proving them wrong on all of those counts."

A string of events, including the untimely death of her brother, led to important realisations about her journey to mental health recovery.

“I started to think how can I live with these experiences? And how can I live as well as I can with them, or how can I live beyond them?”

She left the mental health system in her late 20s and hasn’t been back.

Her career has been dedicated to answering the question: If the mental health system is so poor at responding to people in my kind of predicament, what are better ways to respond?

She started by setting up a peer-led support and advocacy group in Auckland, called Psychiatric Survivors. Through her advocacy work, O’Hagan became first chair of the World Network of Users and Survivors of Psychiatry, then an advisor to the United Nations and the World Health Organization.

She met people from all over the world and their experiences were exactly the same.

“This was a universal experience. It wasn’t confined to New Zealand… They were fundamentally the same experiences of a devalued status and of being coerced and oppressed inside a mental health system.”

When she took on the role of Mental Health Commissioner in 2000, O’Hagan oversaw work done in terms of a recovery approach. That meant doing away with the institutional mindset of “pills and pillows”.

In 2012, the Mental Health Commission was disestablished and the commissioner’s role was moved under the umbrella of the Health and Disabilities Commission.

Current Mental Health Commissioner Kevin Allan says the role has retained its autonomy.

“We don't shy away ever from saying this isn't good enough… But also we shouldn't back away from saying sometimes what we see is really good services provided really well to somebody.”

Since leaving her role as Mental Health Commissioner, O’Hagan has started a social enterprise called PeerZone, which provides resources for people with mental distress and those who support them.

Mary O'Hagan reads a passage from her memoirs. Video: Maarten Holl/Stuff

While the service approach has come a long way since O’Hagan’s time in ward 10 at Dunedin’s Wakari Hospital, she says the “mad movement” hasn’t enjoyed the same success as other causes, like the gay rights movement.

O’Hagan, who has a wife and two sons, says the lack of attitudinal change is disappointing.

When people with mental illness are admitted to hospital, they’re told it’s to keep them safe.

“The subtext behind putting people in hospital is that they’re keeping the community safe,” O’Hagan says.

More than 20 years have passed since Mason’s game-changing report but he describes the current feeling towards mental health as “deja vu”.

“It seems to me that the atmosphere in 1996 was very similar to the one we have today.”

There are calls for an independent review of mental health services, talk of a “broken” or “fragmented” system, and stories of loss and desperation from family members of those suffering distress.

“The simple fact is that there’s a persistent community voice at the moment that is really concerned about the lack of mental health services,” Mason says.

“There is a groundswell of concern and these voices need to be listened to.”

Continue reading to Chapter 3

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

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.

Words: Laura Walters and Katie Kenny
Illustration and layout: Jemma Cheer
Visuals editor: Alex Liu
Copy editor: Joanne Butcher

This project was made possible by funding from the Frozen Funds Charitable Trust, through the Mental Health Foundation.

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?