Moving on...

BY NAOMI ARNOLD

You can't help but look for ghosts when driving up the winding road to the old Ngawhatu psychiatric hospital. Past the new residential development with streets named Montebello and Sunnydale.

Through the gates marked Keep Out. Past streetlights planted incongruously among the trees to the top, where a few crumbling buildings remain. Some were torn down years ago; the ones still standing have their windows and doors boarded up or left gaping open, with the rain blowing in.

The doors closed for good in 2000, but you can't help but feel a chill in the valley where the villas once stood, to think of the 800 people who lived here at the hospital's peak in the 1960s. Though Ngawhatu was a place of its time, when the world washed its hands of its crazies and put them in institutions, it retains a gloomy air a decade on and is still deeply rooted in Nelson's psyche.

"When we were kids, we used to go for drives up to Ngawhatu to look at the loonies," Jude Oliver says. She didn't guess then that she'd end up in institutions herself, a lifetime later.

"If you weren't mad when you went in, you certainly were 24 hours later."

Mrs Oliver works at Kotuku, a welcoming villa in Upper Moutere set far from the main road, overlooking mountains and farmland. Run by the New St-based Health Action Trust, it was the first support network in the country established by "ex-service users", in industry jargon, to help people on the brink. It provides a safe resting place for those in a crisis, a homely alternative to the mental health acute unit at Nelson Hospital.

Mrs Oliver shows us Kotuku's art room, the gardens, the chooks, the quiet places where people can sit and read. There are games, books, puzzles and a box with nail polish and emery boards under the coffee table. A cat called Lily crouches with eyes half-closed on the coffee table.

"She's an important staff member," says Jo Sinclaire, who has come to help Mrs Oliver for the day. "Lily seems to know when someone is really bad."

Nelson Hospital's acute unit also has a pet, smiles Mrs Oliver: a three-legged cat named Prozac.

Those who have emerged from the tunnel of their illness share a refreshing frankness and a wry wit that sometimes tips over into the blackest of humour. They're matter-of-fact about suicide attempts, escapes, electric shock treatment, helpless parents, the deaths of friends, being locked in an isolation ward for weeks with fellow inmates passing lit cigarettes through air holes drilled in the window. They laugh about it now. They have to.

"I remember the keys," says Mrs Oliver. "Big jangling keys."

It's the one thing they all mention; bunches of keys on the hips of nurses in starched uniforms patrolling the corridors of Ngawhatu and the other psychiatric hospitals around the country that they remember: Cherry Farm, Porirua, Tokanui. Until recently, the institutions were used to house the mentally ill, the intellectually disabled and those suffering from dementia, as well as providing short-term acute care for those who either wanted to go, or were forced to.

Things have changed since then.

On this sodden weekday afternoon, a former nurse walks the grounds at Ngawhatu and stops when she sees the car. She leans in through the window. The district health board should never have let the inmates go out into the community, she says.

"They should have rebuilt the villas up here where they could be away from everybody."

But that wasn't at all the point of the change in the early 90s in which the care of inmates was moved out to the community. Apart from two in-patient units at Nelson Hospital, mental health services were farmed out to non-governmental organisations. Though the funding ultimately comes from one source, the DHB, there's no longer a single catch-all provider caring for everyone. All agree that it's better for all involved, though the loss of Ngawhatu's peaceful setting still rankles.

The process began in 1990, part of a national shift that decided there was a better way to treat people with mental illness. The government ordered deinstitutionalisation and a move to a philosophy of community care. In Nelson, that change happened very slowly and very carefully, says the DHB's mental health district manager, Robyn Byers, who orchestrated the shift.

"It was all about wrapping the system around the individual rather than plugging the person into the system," she says.

The shift to community care wasn't without some grumbles from worried neighbours, but Ms Byers is proud that they avoided "any major dramas" – and that came down to good planning, she says. "We went to every door to check how they felt about us coming to town and we kept them all informed. And we didn't have one single complaint."

The philosophy of care went from "come one, come all" (including people with dementia and intellectual disabilities) to an extremely narrow focus, and the hospital now sees 3 per cent of the most seriously unwell.

"There's some things we're very good at, and there's some things other people are better at. We are a specialist clinical service but there are NGOs [non-government organisations] like Gateway, Mental Health Inc and Tuwhare Mahana that are much better at providing residential care and support," says Ms Byers.

Health Action Trust is of those NGOs. Advocacy worker Cameron Campbell says there have been huge improvements in the system overall, particularly noticeable in the hospital's acute unit.

"Uniforms are gone, all the staff look a bit more relaxed. There's no more `them and us'."

Those institutional boundaries are blurring as former patients-turned-advocacy-workers bridge the gap. As Mr Campbell says, the latter have become something like role models for the workers. Often in their teens or younger when they first needed help, the former patients have been through decades of system reshuffles and have successfully negotiated their own illnesses.

Trust workforce development co-ordinator Jos van der Pol spearheaded the development of Kotuku, as well as other support services such as the White House and Compass. Ms van der Pol says they knew what was needed and that it would work, and set up their services on their own. And it seems to have been successful. At last month's health board Health Quality and Innovation Awards, the trust won the Research and Innovation section, winning $2000 to put back into their services. Health Action Trust and sister organisations in Nelson have had a huge impact on the system in Nelson, says Ms van der Pol, and are now becoming a model for the rest of the country.

They were set up because those involved were sick of "banging against the wall and getting nothing but sore heads". Today the workers are passionate and triumphant, thankful that they now have credibility within the mental health system to help those who are suffering as they once did.

"Mental health services will consult with us, will ask us stuff and actually ask us for help from time to time. It took them 15 years to build that up from the start," Ms van der Pol says.

The peer support workers have seen it all, been at the lowest a person can go. They often liken mental illness to a journey.

Some haven't come through at all but will live with it as a person would with any other condition, such as coeliac disease or a heart problem, Ms van der Pol says.

"That wasn't seen as an option in the past but you just make some modifications and get on with life. You know what's good for you and what's bad and you just manage it."

People can stay at Kotuku, which replicates the rural setting of Ngawhatu, for up to two weeks.

The trust doesn't provide treatment or medication, but will store it in safekeeping for people who fear being in the same room with their pills.

Instead, its approach is holistic and examines the person's entire life leading up to their point of crisis, Ms van der Pol says. They don't give advice but instead listen, and help the person find a way through their illness themselves.

"It's always induced by quite a number of stressors building up to a point where suddenly it goes kaboom. If you can work with a person before then and alleviate that stuff, then you will never get to that kaboom point.

"We will sit down and figure out what works for them. If their diet is s..., their accommodation is s..., their relationship is s..., their drug and alcohol use is s..., their employment situation is bad; all these things play a role in why people end up breaking down in the end."

The Health Action Trust workers are there to support people through the darkest of times.

Why do they do it?

Once their own illnesses are under control, why walk someone else's path with them?

"It's like giving back, really," Mr Campbell says. "I've had a lot of services provided to me that have, at times, saved my life through some pretty unpleasant experiences. Now I'm in a position that I'm reasonably well to give that life-saving experience back to them."

He gives a self-deprecating laugh while saying it, but then stops.

"I have saved lives. I find myself relating my position back then to a position where they may be and giving them the benefit of my experience and what I did and didn't do at the time, so they can take whatever they want out of that."

Ms van der Pol says lack of confidence is one of the major barriers to working through a mental illness. "It's getting them to that point where I stop saying, `yes you can do it' and they say, `yes I can do it'. That's the main thing. People have tremendous qualities that they just don't recognise in themselves any more. They've just lost confidence."

Ms van der Pol says the hospital's acute ward is only a place to stabilise and come out.

It can be grim, with the additional stress of having to deal with other people's illnesses at the same time. As one former client of the service says wryly, "You might get three Jesus Christs at once and a Holy Spirit as well. That can get competitive."

But Ms van der Pol poses the question: Once released, they go back out to what? "There's no stepping stone. They often go right back into the situation that put them in there in the first place."

There is a stepping stone at Kotuku, but it's often full. "We need another intervention house somewhere else," Ms van der Pol says. "We could do with some more places like Kotuku and it may be good to look at several with slight differences. It would be really good to have a house like Kotuku but for youngsters."

Part of the trouble with treating mental health is that it's not like a broken leg. You can't see what's wrong and fix it straight away, and the unpredictability of "madness" scares away those who would otherwise help. Ms van der Pol would prefer that the 3 per cent who wash up in the acute unit at Nelson Hospital never got there in the first place.

"If you can catch them when they're on the verge of falling into the abyss rather than when they hit rock bottom, then perhaps they never need specialist services, and I think that's what we really need to focus on."

Back at the house itself, the people who are staying at the moment are still in bed.

"They don't tend to get up too early around here, and they get involved in what they feel like," Mrs Oliver says. "We encourage them to become a part of the house, but it's up to them."

The four people sleeping behind the closed doors are not service users, or clients, or patients, or loonies; they are simply guests, Mrs Oliver says. The brochure says that in Maori culture, to compare a visitor with a kotuku, the rare white heron, is to afford them the highest level of respect.

Later today, the guests might walk in the grounds, do some gardening, paint, draw or read, talk if they feel like it, stay silent if they want. There are no locked doors, no forced medication and no jangling of keys.

From outside the villa's front door comes a raucous clucking.

"Eggs," says Mrs Sinclaire, rubbing her hands together.

"They're laying quite well at the moment," adds Mrs Oliver.

Ten years on from Ngawhatu, the world of mental health care is a very different place.

Next week is Mental Health Awareness Week.

- © Fairfax NZ News