Must move on mental health

Deborah Grace and Deb Lee have a vision for a walk-in crisis response centre for mental health in Hawke’s Bay.

A place with a welcoming, culturally inclusive, non-clinical environment, offering trauma-informed, integrative therapies alongside medical care and social services, and basics, like a feed and a shower, in a way that’s coordinated, comprehensive and timely.

A place where you wouldn’t have to repeat your story over and over, “like a robot”, or get lost in navigating the complex, fractured web of disparate, often duplicate services, programmes, ministries, non-government organisations.

As it stands, “You need a good advocate or many years’ experience of the system, unfortunately, to know where to go,” says Grace. And when the need is acute, it can be hard to be seen: “You need your episode to be between 9-5, really!”

Currently, access to in-person mental health services is through GP referrals or appointments. And while that process is a lot easier now than it was in the past, and the triage system works well, there are barriers to seeing a GP in the first place (cost, registration, operating hours, post-Covid telehealth), and overstretched services with limited places have long waitlists – if you have low-moderate needs, you could be waiting three months. Yet distress, unchecked, can quickly escalate.

For many, “It’s after midnight when the shit gets real,” says Lee, “and ED is the big, red arrow”.

Both women, who have lived experience of mental illness, are on the DHB’s Partnership Advisory Group (PAG), Grace as chair, which with renewed engagement under David Warrington, service director for Mental Health and Addiction (MHA), has been given a seat at the decision-making table.

In 2015 they helped co-design the new acute inpatient unit, Ngā Ra Rākau; in 2020 they have a voice in shaping how those presenting with mental distress could be better, more appropriately assessed and supported, with a review underway for a different, more cohesive approach.

New crisis model needed

As with the Emergency Department, which is seeing record numbers of people, the DHB’s Emergency Mental Health Service (EMHS) is run off its feet with an inexorable rise in demand.

In most cases, “it’s like cracking walnuts with sledgehammers”.

“What we are seeing in EMHS,” says EMHS manager Alexandra Palacio, “is not more mental illness but more social distress – poverty, housing, job loss, family harm. Often, it comes down to identifying the barriers to mental wellbeing, and addressing immediate needs, such as finding somewhere to live, first. These are needs that can’t be met clinically but show up at our door as distress. We have to become really skilled in dealing with this, which is about building relationships and a multi-sectoral approach.”

The DHB is currently reviewing its crisis model, says Warrington. “Our idea is to be able to provide a service that’s almost a one-stop shop, that can do anything from assisting social distress through to managing major mental disorder. This will require us joining up with our NGO partners, with our iwi partners, MSD, police. We’re just working through that at the moment with the Ministry of Health as to what that might look like, and how we can join up the sector to manage the demand.”

Critically, any such hub will need to be well-integrated, with good linkages and connections to what’s available in the community.

“There are many good people out there who are already doing good work, especially around suicide prevention,” says MHA medical director, psychiatrist Anoek Dechering-Raes, “and it needs to be a lot wider than what we as a DHB can do. Secondary care services are a minute part of it.”

Peer support

Deborah Grace is keen to see a ‘mental health café’ as part of the proposed hub, similar to the one successfully trialled in England and now being rolled out across the UK – “It dropped admission rates to ED by 33%”.

Staffed by volunteers with lived experience in a neutral area, the café is open to anyone who needs it and operates outside of business hours. “People can turn up, whether that’s at 3am or on a Sunday afternoon – they can have a cup of tea, or talk with a friend, or ask for help … Seeing how others cope with their specialty strain of mental illness is really helpful.”

Peer support models are one way the DHB is looking to bridge the gap in the workforce (there are not enough skilled counsellors, for a start), which is likely to present even more of a barrier when the new primary health initiative comes into effect.

The government has pledged to frontload more resource for mental health services into primary care, with particular focus on targeted programmes for youth, Māori and Pasifika.

Hawke’s Bay has yet to see any of the Budget 2019 $450 million investment into expanding access to services (as of July, RNZ reports, only $32 million had been spent nationwide), although the PHO, Health Hawke’s Bay, promises “primary integrated mental health services will be rolled out soon”. Along with cited Covid delays, Newsroom’s mental health reporter Laura Walters says the reason for the slow roll-out is workforce constraints.

David Warrington believes the government’s approach is the right one. “It’s about trying to get onto things early to prevent people from getting to the point of needing secondary services.”

Silent pandemic

Sir Peter Gluckman, in a report he co-authored in Sept 2020 on youth mental health, says greater urgency is required. He points to a silent pandemic of mental distress amongst youth, globally, with the last decade witnessing a rapid, concerning rise in psychological distress and suicide rates (NZ’s being notoriously high).

Here in New Zealand, poor mental health in youth is persistently inequitable and worsening, and the impacts of Covid-19 on youth are likely to be extensive and enduring.

Since lockdown began Lifeline has seen a 25% increase in calls and texts of people in distress, with Youthline reporting a 50% increase in texts from young people reaching out for support, worried largely about “failing life”.

While anecdotally doctors in general practice speak of seeing the impact of Covid-19 on people’s wellbeing, Anoek Dechering-Raes says the only real discernible Covid-correlated upsurge in demand for acute services they’re seeing in Hawke’s Bay so far is among teenagers.

“During lockdown it would have been difficult for many of our kids, particularly those from deprived families, to study.” And now they’re back at school but there’s the culmination of practice exams, the uncertainty of final grades, the schools themselves been worn down, and they’re finding it harder to keep up the momentum of learning.

“I think there is a lot of pressure on them, and we have seen that over the last few weeks. Lots of really distressed kids, because of exams.”

Teachers are also observing elevated levels of anxiety and more unpredictable or overly aggressive behaviours among primary and intermediate school students.

On the election trail, Labour vowed to roll out Mana Ake – resilience programmes for primary school kids, developed in Canterbury, Kaikoura in response to the earthquakes and terrorist attack – across the country, and to expand the workforce of allied health workers (social workers, counsellors, psychologists, etc) in schools.

Elephant in the room

While 1 in 5 New Zealanders live with mental illness and/or addiction in any given year, for Māori it’s 1 in 3, and for those in prison, 2 in 3.

We may not lock our up ‘mad’ in 19th century asylums anymore, but we do lock up some of our most mentally vulnerable in prisons (91% of the prison population have had mental illness or substance problems within the months prior to their conviction), and disproportionately our indigenous.

Māori are less likely than non-Māori to access primary mental health services, more likely to get later intervention, to be sectioned (compulsory treatment order), secluded, restrained. Incarcerated. And they’re more likely to take their own lives.

“What drives distress are the things we don’t like to talk about – things such as the prevalence of psychological, physical and sexual violence across our society, inequity, racism, intergenerational poverty and the impacts of colonisation, writes NZ’s suicide prevention officer and former chief coroner Carla na Nagara in a recent article in The Spinoff.

“As a society we have not been ready to own these issues, much less to acknowledge their relationship with our suicide rate. It is much easier to consider suicide a problem to be solved solely by services, because the alternative is to accept that we have serious issues of inequity and human rights to address.”

Hawke’s Bay has a high suicide rate, in line with other regional, low-socio demographic, high-deprivation areas, says David Warrington. “If you go through the necessities of life (a house, some education, food, love, being looked after), or lack thereof, and then look at the high use of drugs and alcohol, exposure to adverse childhood experiences, to trauma— we’ve got reasonably high levels of all these factors, which plays out in early teens, early adulthood.”

Community-led care

For many in our communities, including Pākehā, the Western biomedical model of care is too narrow, with an over-reliance on pharmaceuticals and an under-acknowledgement of the role cultural supports can play in prevention and recovery.

Māori, broadly speaking, want to exercise their rights of self-determination in their care, with more kaupapa Māori services, inclusive of traditional healing modalities and working within frameworks such as Te Whare Tapa Wha (spirit, body, mind, whānau).

While Pasifika, who often feel alienated within the system, want to develop services based on ‘Pacific ways’ that are holistic, community-centred and culturally informed.

Both have demonstrated during Covid-19, that when entrusted with managing and delivering their own care and health response, outcomes have been overwhelmingly efficient and successful.

We will need to see more of this, the experts say: communities leading the charge from the front. Which means changing tack from a top-down, paternalistic approach to diverse, cross-sector collaborations, and shifting the locus of attention from the apex of acute need to the ‘flaxroots’ of prevention and wellbeing.

How this will be effectively overseen and administered in the commissioning of services is still, however, a question for the government.

It’s everyone’s responsibility

The DHB is funded, as a rule of thumb, for 3% of the population that’s estimated to experience severe mental illness in any given year.

“We see in secondary care services about 3.4% in Hawke’s Bay,” says David Warrington. “But it’s important to realise that there are a whole lot of people outside that [figure] who live their lives relatively well in the presence of some form of mental illness, and who don’t require hospital-level services.”

The general public doesn’t always see it that way, however. Certainly, there’s societal intolerance for the eccentric, the odd, those on the spectrum of mental illness (EMHS are frequently contacted to deal with someone perceived as ‘crazy’, when it’s not medical services that are required but understanding), reflecting ignorance more than anything.

There’s still stigma and discrimination – “just truckloads of it” – even more so around addiction. Even though the majority of New Zealanders (50-80%) will experience mental distress or addiction challenges in their lifetimes.

We need to understand that it’s our issue too, and that much like Covid, mental wellbeing requires collective action.

In our busy, disconnected, uncertain world that means going back to basics: checking in on our neighbours, supporting friends who are struggling in practical ways (like cooking a meal), making time for our children, keeping an eye on our teens. Having the courage to stop and ask a stranger who seems upset if they’re ok – it may seem trite and you might be knocked back but the fact that you asked can often make a real difference.

And it means, as a society, addressing the social determinants of mental ill-health: poverty, trauma, colonisation. And that’s no quick fix.

Now for the plan

It’s been over two years now since the He Ara Oranga Inquiry into mental health and addiction was published, with its ambitious, aspirational agenda for a whole-of-person, whānau-centred approach that shifts mental wellbeing from the periphery to the front and centre of health.

All bar two of its 40 recommendations were accepted (in principle at least) by the Ardern coalition government, and commendable steps have been taken:

• re-establishing a Mental Health and Wellbeing Commission;

• setting up a Suicide Prevention Office and a cross-party working group;

• committing an unprecedented pot of funding for primary mental health services;

• moving to replace the Mental Health Act with a more humane and dignified law).

However, we’re still to see a strategic direction, let alone the whole-of-government, all-of-community action plan it’s going to require.

The danger is, we’ll see ad hoc bits and pieces rather than the transformative, systemic change being called for.

Mental health commissioner Kevin Allan believes that the government’s Covid-19 mental health recovery plan, Kia Kaha, Kia Māia, Kia Ora Aotearoa, provides a good foundation for such a plan – it needn’t be complicated, it just needs to ensure there’s an enduring commitment to implementation. And that as a matter of priority.

Covid-19 has only sharpened that attention to the need for such a paradigm shift, while also demonstrating what is possible when there is the political will and public backing to do what needs to be done.

Living with Mental Illness: Deb’s Story

When Deb was a young mother in the 1990s, an horrific event she was privy to “caused a catastrophe in my head,” triggering acute psychosis and her journey with mental illness.

“I have schizophrenia,” she explains, “I own that. It’s not a big deal, usually, though in the early days it was, struggling to get a diagnosis, wondering what the hell was going on. I’ve been sectioned maybe 4 or 5 times, with some voluntary admissions as well. I had nearly a year in the Ashburn Clinic down in Dunedin. It wasn’t because I wasn’t managing, I could just see the cycle: I go in and they give me all those pharmaceuticals, I zombie out for a couple of weeks, then I come home and slowly stagger back into my life until it happens again. So, the idea of going to the Ashburn was to retrain my brain, really. Which I did. You have to, because all the system can offer you is pills.”

Determined to take charge of her own wellbeing, Deb tailed off medication with clinical support, and replaced it “with things like mindfulness, meditation, nature, yoga, exercise, better diet, a lot of art, my dog, reconnecting with family and friends, and volunteer work—that’s been really crucial to me – and my paid work which gives me a sense of purpose.”

Deb, who once trained as a teacher, works in a local primary school one-to-one with vulnerable kids; a job she got through Network Personnel – Disability Resource Centre, and an example of a successful community partnership that makes a mutually significant difference in people’s lives.

“I’m a voice-hearer, and I’m sort of comfortable with that now,” says Deb. “Except when I can’t function like I usually do. And I’ve been fine, all these years, medication-free.”

Until Covid, compounded by a string of personal losses, pulled the rug from under her feet.

Deb lives alone on a small urban section but normally her days are busy, filled with other people, a lot of talk, a lot of activity. When lockdown was announced in March, her siblings, worried she’d get bored and restless on her own, encouraged her to move out to rural Kereru, where her daughter and son-in-law were living on a cattle farm, preparing for their impending move to Taranaki to take up new jobs, a baby on the way.

Deb, who loves gardening, says in some ways it was well timed because she had “heaps to do”, throwing herself physically into “turning the place into something you could put in House & Garden.”

However, “It was the middle of the Hawke’s Bay drought, and whenever you went out, the cows would follow you because they thought you were going to feed them, and I picked up their anxiety and the community anxiety as well. A lot of the farmers had already sent their animals away, so I would go out walking for miles along the main road, and there’d be no stock, no life; it was bleak and hot (it never rained the whole time I was there), apocalyptic, really.

“Cellphone coverage was bad and I had no mates, I was just marooned, like a refugee, in this landscape!

“I was using all my techniques that had worked for me for years to keep myself in reality, in the here and now, and useful. But the desolation, and the one o’clock news, hearing every day what was going on in the world and in our country, feeling so powerless – like standing on the edge of the world waiting, and you don’t know what you’re waiting for, whether it’s a bus or an iceberg, or God only knows. And I slowly began to slip in my mind.”

Deb believes that with early intervention and some early reflection “before I lost my insight”, she might have been saved from the psychosis she’d eventually go into. But her family didn’t know her signs well enough and were preoccupied with packing and the uncertainty of whether the move would even go ahead or not, what the different alert levels meant. And Deb had none of her supports: “I couldn’t see my doctor or my key worker, who acts as my regular touchstone.”

The day before the country moved down to Level 3, Deb’s daughter miscarried, in what was a traumatic experience for all – she couldn’t get through to the doctor on the call-back system and when Deb drove her “flat-tack” to the health centre in town, distraught and “bleeding out”, was turned away because she didn’t have an appointment. It was not until the following morning that she received medical care, on what was also Gypsy Day, when share-milkers and farmworkers around the country change farms, herds.

“We come into the health centre for this appointment with their loaded-up vehicles and trailers, all their worldly goods, their hopes and dreams… and yeah, the scan confirms the baby’s gone. We come out, standing in the car park, just crying, holding each other. Then they get in their vehicles and drive away…

“You can imagine, I’m finally home and the whole fucking world has changed – not only my inner world, the world literally has changed, and I’ve just lost my kid, my grandchild, no mum [Deb’s mother died unexpectedly earlier in the year]. It was an extreme set of circumstances and the timing of it, it was like a cruel joke. I sat with that and just got totally derailed.”

At this point, when “the schizophrenic symptoms rocked up”, Deb’s chronology becomes shaky: “I don’t remember, but somehow the key worker was able to get back in action. They could see that I was in trouble and got the Home-Based Treatment Team involved [a specialist mental health team, mainly psychiatric nurses, that work all hours, with a view to keeping people out of hospital and in their own homes], with daily, even twice-daily visits.”

Deb also had practical, spiritual and wrap-round support from her friends, her neighbours and wider community, which helped see her through this “horror” period. With the shift to Level 2, she was able to attend Harakeke (the day intensive programme at Ngā Ra Rākau), where the predictable routine and the connection with both her peers (who understood what she was going through) and staff (the same, constant three) provided the crucial stability to recover – “connection is the answer to everything”.

She’s now back at work in the job she loves (“the school is amazingly supportive”) and, in the lead-up to Mental Health Awareness week when I speak with her, busy developing her vision for a one-stop-shop crisis hub in Hawke’s Bay.

Photo: Deb Lee and Deborah Grace. By Sarah Cates