How the discussion around mental health ignores crucial voicesby Jess McAllen
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Momentum around mental health is gathering. But where are the voices of the people who will be impacted first-hand by any policy change?
“'Dangerous' man escapes Dunedin psychiatric hospital”, declared Newshub as those with relatives in Dunedin shared the image, telling loved ones to lock their doors and sleep with the lights on.
Except Clayton never went missing. An hour later, with significantly less fanfare, police issued a correction. He’d been at the hospital the whole time. A brief, embarrassing mistake for staff had whittled Vincent’s life down to a Google search result: dangerous man on the run.
“I’m really disappointed they put that picture of him up,” says his cousin, Donna Bennett. “The comments say he’s a meth-head and he’s not even. He’s not a dangerous person, that’s the sad thing about it. He’s just very unwell.”
In a year when the conversation around mental health has reached such a boiling point that politicians are campaigning on initiatives to reduce suicide the case of Vincent Clayton’s treatment is an example of a specific group of the mental health community that is being ignored. Last week's release of the latest provisional suicide statistics revealed that 606 people killed themselves between July 2016 and June 2017.
Clayton isn’t just the man with bulging eyes who escaped but then, actually didn’t, from a mental health unit. He’s an extremely talented athlete, says Bennett. He likes keeping fit, painting, drawing, making anything he can. Southern DHB say that any inquiries about what happened that day should be directed to police and “any questions regarding why they sought assistance from the public would need to be directed to them”.
But Bennett says agencies need to get their facts right. “Make sure he is actually missing before you bloody well go putting shit like that around on Facebook. It’s been seen all through New Zealand, how disrespectful to him.
“All he wants is to have a stable life.”
The stark statistics
At the launch of Labour’s 2017 election campaign, leader Jacinda Ardern gave an impassioned plea for change. In her speech, she cited our youth suicide rate being the highest in the OECD. We need to “focus on love and hope rather than grief and loss”, she told the crowd, saying the party would commit to putting a nurse in “every single public high school across the country”.
But New Zealand’s mental health is more complicated than that and the lack of conversation about adult mental health is concerning long-time service users. It’s not for lack of evidence either, as we have plenty of publicly available facts about our suicide rates.
Approximately 40 per cent of suicides in New Zealand are by people who accessed specialist mental health services in the 12 months prior to their death. These are usually people with long-term mental health challenges, considered “too serious” for GPs to handle by themselves and are meant to be 3 percent of the population (increased demand means the number is currently 3.5 percent).
These are people who have reached out for help and, for whatever reason, were unable to be helped.
Further, the age bracket with the highest number of suicides between July 2016 and June 2017 was those aged 20-24-years-old (79 suicides). Both the 25-29-year-old and 40-44-year-old cohorts had 66 suicides each.
This isn’t too different from last year when 25-29-year-olds had the highest number of suicides, followed by 20-24-year-olds.
While last year’s statistics saw female suicide at its highest since the public coronial records began a decade ago (the ratio changing to one female suicide for every 2.41 male suicides), this has decreased this year. There were 457 male suicides and 149 female. However, women are more than twice as likely to be hospitalised for intentional self-harm.
Māori continue to be over-represented in our suicide toll with 130 Māori suicides this year.
WHERE TO GET HELP WITH MENTAL HEALTH
Need to talk?: free call or text 1737 to talk to a trained counsellor, anytime.
Lifeline: 0800 543 354
Suicide Crisis Helpline: 0508 828 865 / 0508 TAUTOKO
Depression Helpline: 0800 111 757
Samaritans: 0800 726 666
Youthline: 0800 376 633 or email email@example.com
Healthline: 0800 611 116
What about the rate?
Presenting the raw number of suicides per DHB is not a totally accurate indicator of where problem regions are because the size of populations varies widely across DHBs.
Looking at the rate of suicide per every 100,000 people tells a slightly different story. While Christchurch (pop 539,600) has the highest number of suicides, the region with the highest suicide rate for the past two years has been the West Coast (pop 32,500).
The information below has been provided by the Green Party, as the Coroner’s Office said it could not provide a breakdown of the suicide rates per region since the new population figures only recently came out. Because there are relatively few suicides in some regions, relatively small variation in the number of suicides can have a large impact on the rate.
While this year’s number of suicides (606) was the highest since the provisional statistics were first recorded a decade ago, the suicide rate was 12.64 per 100,000 people. This is similar to the high rate from the 2010/11 year (12.65).
Comparable data on New Zealand suicide first became available in 1948. In 1998, the rate reached its peak with 15.1 suicide deaths per 100,000.
Unattractive realities of people who don't fit into a box
The truth of mental illness is starkly different to the sanitised narrative seen in 2017. It can wail, rant, be overly intense, rude. And yes, physical side effects from heavy psychiatric medication —Vincent has Paranoid Schizophrenia and was “up to his eyeballs” on anti-psychotics — can make people look a bit strange to the everyday observer (or “cooked” as many Facebook commentators suggested.)
Mental health advocates have fought hard to get to this point, often through government-funded initiatives such as Like Minds Like Mine and the Depression Initiative Contract, which allowed former All Black John Kirwan to inspire many New Zealanders to open up about depression.
But in the bid to make people more accepting there has been a focus on mental illnesses that are seen as more relatable, like anxiety or depression. Or people who are easier to feel sympathetic towards (a teenager with their whole future ahead of him rather than the homeless man cussing on Queen Street). This is not to pit mental illnesses against each other — any mental illness has the possibility to debilitate someone’s life — but to note that there is a chunk of the mental health community who feel very much on their own.
There’s a reason this group isn’t as vocal. It’s hard to listen when someone is struggling. They can lash out or behave in ways that contradict the person you thought you knew. Too often they are dismissed as attention-seeking.
Perhaps most crucially, who has the energy to speak up when they’re in the middle of a crisis? And who is going to listen to the person convinced they’re the second coming of Christ?
“It shouldn’t be on the marginalised party to speak up and risk our careers and relationships,” says Sophie, an Auckland woman with bipolar.
“For all the talk about stigma around depression and anxiety, it’s actually talked about very openly.” There’s collages about depression on Facebook, she says, and memes about social anxiety where “everyone chimes in with support”.
Conditions like bipolar, schizophrenia, borderline personality disorder (BPD), obsessive compulsive disorder (OCD) and post traumatic stress disorder (PTSD) are seen as scary.
Sophie keeps her condition a secret because to other people she appears “normal” and the stigma, despite years of campaigns urging New Zealanders to be more open-minded, is too strong.
“People like me who have long-term mental health concerns don’t want to be a drain on society. I have a great job, good relationships, and am generally doing well — but I know how precarious my situation is. I’m one brain chemical misfire from losing everything I’ve worked for.
“We get shunted aside because we can’t be trotted out as problems that are easily fixed. The 40-50 years of investment in the ongoing care of people like me can’t be packaged up into a band-aid proposal seven weeks before the election.”
People think everything can be solved with a paltry amount of counselling and GPs prescribing medication that is very complex, she says.
“My problems can’t be fixed by six weeks of counselling and maybe seeing a psychiatrist every couple of years. It’s very easy to spin out of control when there’s a lack of both trained professional oversight and understanding in the community about our illness.
Investing in the management of long-term mental health conditions would save the health system a “ton of money”, she says, rather than every three years or so when she has a massive breakdown “because we’re stretched too thinly to see the signs. We deserve more than being pushed from crisis to crisis.”
“I’m incredibly skeptical about the various half-baked mental health care initiatives proposed during an election cycle. Everyone suddenly decides we’re in the middle of a crisis and something must be done. A quick injection of cash into crisis services helps, but it doesn’t address the ongoing issues.
“Honestly, if we’re lucky, the medication we’ll need for the rest of our lives is funded and someone might answer our crisis call next time we have an episode.”
The one-size-fits-all presentation of mental illness, where someone is depressed and gets over it, is dangerous because so many who have depressive episodes don’t return to their old lives. Illnesses grow. Diagnoses can change.
“It’s shaming people who don’t recover immediately. As if there isn’t such thing as a relapse,” says Leah, who has ADHD and acute depression.
The 29-year-old knows she doesn’t fit into a neat little package that appeals to people’s sympathies. Last year she experienced medication-induced psychosis (a side effect of sedatives she was prescribed by a GP).
“I’d hear crashing noises and be frightened by something in the background, like ‘oh, crap’, completely on edge about everything. I’d hear people talking to me. I really questioned whether I had schizophrenia at that point. It was just chatter.”
At the time she was working as a chef. She’d start making new menu items, thinking she’d heard her boss say they were creating a new menu.
“They didn’t know I was on meds,” says Leah.
“She still respected me which was really cool but at the same time they wouldn’t trust me with stuff because they thought I was a bit goofy.”
Her son was taken away by police, courtesy of the Care of Children Act, as her parents suspected she had a drug problem (a test disproved this, she says).
“It was also on the basis that I had mental health issues, which I’m really open about to other people. They kind of used my depression against me. They said I wasn’t well enough to parent. It was really damning because my mum had some untreated mental health stuff as well.”
While Leah is happy people are opening up about suicide, she questions whether all the talk is useful.
“Is this helping anyone? Are we actually talking about suicide because it’s a thing that affects a lot of people, have we thought about how the increased discussion affects people’s mental health?
“It’s just a cool thing to talk about like ‘I did depression and now I’m a graffiti artist’.”
It’s a cynical view, she knows, but she’s also sick of people talking about the tragedy of suicide and then “we put it in a bubble and talk about something else”.
James (not his real name) is also 29-years-old and has obsessive compulsive disorder. OCD is a mental illness where people have unwanted and repeated thoughts (obsessions) that drive them to do something over and over (compulsions). It’s that niggling feeling when you have to go back and check you actually turned the oven off before leaving the house — except a person with OCD can spend in an hour stuck in a loop of self doubt, having to tap the oven switch a certain number of times to be reassured.
The illness is often depicted as “charming or quaint”, he says, and not reflective of how serious and disruptive it is (“I feel a lot of personal and professional shame for my OCD”). Think Monica from Friends, or Emma from Glee, and the stereotypical image of a person scrubbing counters.
His compulsions include needing to put the song back to the start every time he’s in the car; needing to finish reading every internet tab he opens; starting his files (he does legal work) in order of the pile he sees each day from the top, even if it’s not the right priority.
“I feel like saying I’m OCD is a cop-out,” he says, “so I don’t say it at all.”
Like Leah, he is frustrated that the reality of living with a mental illness in New Zealand isn’t being reflected in the current conversation.
“Not to be crass, but a lot of the coverage feels like it’s of waifish silent types who never bother anybody before tragically offing themselves. A lot of mental illness isn’t silent, it can seem intrusive. Ugly or irritating mental illness is still in the mad, bad and dangerous to know category and we only celebrate the good ones.”
Again, it sounds cynical, but telling people with a history of long-term mental health issues and suicide attempts that it “helps to talk” eventually starts to sting. They’ve been talking, they say, but no one is listening.
“It eventually becomes a bad political cop-out,” says James, “where direct action is needed in housing, justice systems, consumer regulation, raising benefit levels, reestablishing a base of meaningful work in New Zealand, and securing tino rangatiratanga in practice rather than aspirational principle.”
After-all, he says, high school memorial Facebook pages for people who kill themselves are now a decade old. The silence has well and truly been broken in these informal channels.
His ideas to create a better New Zealand?
Support well-trained and appropriate-resourced care workers in higher numbers (“it should be as easy to access Crisis Assessment Teams as it is to call the police or an ambo”).
Ensure continuity of care with an ongoing provider.
Allow people to opt-in to respite for mental health before they are in a life-or-death situation (“I remember a client with a record of suicide attempts who had just wanted to stay somewhere while he was beset with panic attacks and compulsive behaviour, but couldn’t gain admission because he wasn’t talking about killing himself yet”).
Establish health-justice partnerships with community legal centres and financial counsellors so that people accessing inpatient care are able to address the factors that are aggravating their mental illness.
Care in the community
Despite articles about patients “escaping” from psychiatric wards, 91 per cent of public mental health users are treated in the community, either by non-governmental organisations or at a Community Mental Health Centre via a District Health Board.
The centres are unassuming buildings. There are four in the Auckland DHB area: Cornwall House, Manaaki House, St Luke’s Centre and Taylor Centre. The one in Wellington’s CBD is referred to as the Tory Street Clinic, and so on. Like visiting a doctor, patients come in for an appointment, catch up with professionals, have scripts written for medication and receive counselling.
The first appointment in community mental health (if your referral has been successful) is with a nurse or social worker who gets the patient to outline their history and assess whether they qualify for further treatment. This is called a “choice appointment”.
When the government talks about meeting waiting time targets, this is what they are referring to. The actual clinical help starts on the second appointment (if you made it through to the next stage) and this is with a psychiatrist. In the tangled web of community mental health lies a common problem: the long waiting list for counselling (“I’ve never heard of anyone actually receiving counselling through the public system”, says Sophie, “I think it’s a myth”). It’s not, but it can be a long wait.
District Health Boards are not required to report on the waiting times from first psychiatrist appointment to first psychologist or counsellor appointment. However, anecdotal information from interviews for this story and past mental health stories tells of lengthy wait times, with people in busier areas like Auckland and Wellington waiting between six months to a year. As multiple studies show that improvement in mental health is usually achieved through a combination of counselling and short-term medication, this is particularly concerning.
Moving house means changing which centre you go to which can be another month or so of waiting. Sophie, who speaks of her bipolar earlier in this piece, faced a struggle when she moved into a flat that was on the border of two community mental health centres. Neither were able to decide whether she was meant to be with them or not so she helped her doctor adjust her bipolar medication in the middle of an episode: “When my possibly impaired judgement has more input on my treatment than the professional, that’s incredibly reckless.”
The sector faces a shortage of staff, which in turn means less psychologists and longer wait times. Wellington’s Community Mental Health team, which has two full time psychologists, was stretched for most of this year as one position was vacant for six months and another vacant for three months. This was confirmed by Capital and Coast DHB and both positions are now filled. (Full disclosure: I’m currently a patient at this particular mental health centre.)
Waiting times like this mean many people resort to dealing with their mental illness on their own, such as Tom, who lives in Wellington.
“I don’t like talking about my OCD because the symptoms are embarrassing and make me sound a lot like a crazy person,” he says.
“Everyone thinks they know what OCD is because they like having a tidy desk so who can be bothered having that conversation?”
He’s been through community mental health and has grown tired of the revolving door.
“I’ve tried so many times to engage ... going in every time to talk your way through your entire mental health history —again— and trying to be open minded that this time you’ll be referred to some help…”
“I put off going to bed because I know when I do it could be several hours of unpleasant feelings and I might only get to sleep when I’m too exhausted to get up and lie down for the ten dozenth time. Sometimes I can feel my legs getting toned from all the sitting and standing.”
He sees parallels in his OCD with his childhood epilepsy that taught him how you are never in control of your body.
“Having OCD taught me that the idea of being in control of your thoughts is just as optimistic...People don’t like having conversations that suggest those deeply held tenets of human function might not be true...People simply don’t want to admit that the mind is like that.”
But for every bad experience with community mental health, there is a good one. Tales of case workers who go above-and-beyond to advocate for patients wanting to come off intense medication or psychiatrists who call to check in when counselling waiting lists are too long.
One of these positive experiences comes from a woman called Nadia in Auckland who accessed the Taylor Centre when she was going through a hard time.
She’d been in and out of counselling offices trying to get help ever since she left home, Her parents were abusive alcoholics who she hadn’t talked to for more than 12 years. “I’d always known something was wrong, but I didn’t know what. I was just like mum, even though I was trying not to be.”
Eventually a doctor prescribed Nadia antidepressants. It was great. She had energy, concentration, an amazing attitude —and then she crashed. This cycle would happen for months at a time. Eventually her doctor referred her to the Taylor Centre, thinking she might have bipolar. There was a waiting list but she was able to have her first appointment within a month.
She was diagnosed with borderline personality disorder, “it was a real hit to me, I started to really feel what the stigma was like. My therapist apologised for the way the mental health profession has treated people with personality disorders. She says they really didn’t do a good job.
“Dialectical behavioural therapy, an antidepressant and quetiapine are my ways of managing my illness, regardless of the labels.
“I think the therapist is fantastic at Taylor Centre.
“People outside of the mental health system realise that it’s so tricky for clients. We are often justified in not trusting the very people supposed to help us. We often have terrible experiences of being given poor advice, being experimented on, being ignored or just dismissed. Sometimes we appear okay because our normality is just not like other people. We might seem fine, because the altered state of our lives is just the usual.
“It was not until I was on medication that I understood what people might experience in a day. I was really surprised … It must be so nice to go through your day without this weight, this veil, this fog.”
She has a message for politicians:
“I’m an educated, privileged woman who couldn’t get the help I needed even though I am articulate and able to find resources for myself. At all points in the system, there are barriers, and people with poor mental health simply do not have enough in their tank to overcome all of those barriers, no matter their social status.
“Many of the people struggling are the most reviled in society. Many of the people who are struggling are the least likely to receive compassion. Mental health is not something that you can just recognise, label and then put in a box. It requires specific training to give adequate support and should be fostered from an early age.
“The work we need to do is not an election-winner. It requires all political parties to set aside their difference and really invest in society. Our mental health will not improve without investing in health, education, and social welfare.
*First names or pseudonyms have been used for those who spoke to us about their mental health issues to protect them from possible discrimination.
This article was first published on The Wireless
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