Finding Someone Who ‘Gets It’

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By Alison McCulloch

This is the third in a series of articles looking at post-natal depression in Aotearoa New Zealand.

If the public health system can only help ‘the tip of the iceberg’ when it comes to post-natal depression, where are all the other women going?

As reported in ‘But I’m Not Depressed‘, many will never get help, but for those who do reach out, what they get will depend on where they live and whether or not there’s a champion in their community.

In Nelson and Wellington, for example, it’s the voluntary sector that’s providing much of the front-line care for women not deemed ill enough for specialist services. While Nelson DHB says it doesn’t have “the number of patients that would support having a dedicated Maternal Mental Health service or team”, around 100 women a year are being referred to the volunteer Postnatal Depression Support Network. (That figure looks set to rise this year, with the network already having received 93 referrals by early September.) And with nearly 1,500 births last year in the region, there are likely several hundred women facing post-natal mental health problems.

Asked where women with PND would go, the DHB pointed to its mental health and addiction services, and also to the community support groups. The DHB does contribute $335,000 a year to the South Island Regional Mother & Baby Service, based in Christchurch, but that service is for severe cases, and access may not be easy for women who live outside the area.

Funding Struggles

Anna Hammond

Anna Hammond is the Coordinator of Postnatal Depression Support Network Nelson says one-off DHB funding the group received in 2014 was not renewed, which put huge pressure on their finances. “We had been paying counsellors to see our clients and had in effect run out of money and nearly had to stop our service to the community,” Hammond said.

But, after some media publicity, a one-time $5,000 donation saved the network from closure. She says the lack of support from the DHB was “really disappointing”, and it was getting harder and harder for her network and the myriad other non-profit groups like it to find the money to keep going.

“Statistics show that we do save the DHB a lot of money in that we see women for free, and we usually see them at the start of their difficulties, and quite often getting support at an early stage can stop things getting worse later on, which is better for the mums, babies, partners and other family members/whānau,” Hammond said.

It costs around $60,000 a year to keep the service going, covering 25 paid hours of work a week. Everything else is done for free by volunteers.

Antoinette Ben

Meanwhile, in the capital, the support network PND Wellington faces similar issues. Antoinette Ben is the convener of the group, which provides 800 hours of low-cost or free counseling a year, a 7-day-a-week phone service, a monitored closed Facebook page with more than 500 users, a website and regular newsletter.

“We get no government funding, but we are really relied on by a lot of government agencies. So if you go to your GP, your GP is probably going to refer you to us,” Ben said. “If you see your Plunket nurse and she’s concerned about you, or your midwife or social worker, we would be one of the first places they suggest you use, so we’re relied on quite a bit, but we have to take so much time to find out how we’re going to get through the next six months.”

PND Wellington’s budget is similar to the Nelson group’s at $60,000 a year, which covers three part-time workers. Ben said the group seeks money from the usual community funders, including Lotteries, Community Organisation Grants Scheme (COGS) and even gambling trusts. “It’s a constant taking of time and mind, and we could be actually doing a lot more to actually support mums with that time and energy.”

People Who ‘Get It’

Besides picking up patients the public system can’t or won’t take, groups like Postnatal Support Network Nelson and PND Wellington offer something the specialist services may not: people who have been there, and “get it”. Sure, there are the psychiatrists for severely ill women, the counsellors attached to GP’s practices, the midwives and Plunket nurses and iwi health providers. But if they haven’t been to that dark place themselves, the help they offer may not get through.

“If I didn’t know about them,” January* said of her local PND support group, “I don’t know where I would be actually.” “It’s just a nice feeling to be with people who understand and to be able to put me in touch with specific post-natal depression counsellors that has made the world of difference,” she said. January* suffered silently with emotional ill-health throughout her pregnancy and finally got help when her son was 6 weeks old. She was first referred by her GP to a counsellor whom she saw a couple of times then dropped. “She was a nice lady but I didn’t feel like she had much experience of PND, I didn’t feel like I would get anything from it,” January* said. Others had similar stories.

“If they hadn’t been there, I would have felt very isolated and by myself and I would have thought that I was the only one going through it,” February* said of the support group she’s a part of. “Lots of people now have coffee groups and stuff and a lot of those mothers, while they might be feeling whatever they’re feeling and having negative thoughts towards their child, the last thing they’re going to say to their buddy at the coffee group who is ranting about how their precious little one crawled today … ‘you know what I had a crap day’ and the other mothers go ‘Oh my god I know, my four year old was throwing his toys and I can relate to that and I felt like throwing toys at my four year old’”.

April*, too, says her support group was a lifeline. “During my worst times, knowing that I could put up this post in this group, and it was safe and no one could see it but these ladies and there was always someone there who would respond, that was a lifeline, knowing that there were other mums who got it.”

‘They Back Us Up’

Dr. Mark Huthwaite, a perinatal psychiatrist in the Regional Specialist Maternal Mental Health Service in Wellington, says the publicly funded mental health services see just the tip of the iceberg “because that’s who we are funded for – moderate to severe – and I think the services that do exist are actually really good.” The struggle, he says, is to provide services for that much bigger group, the mothers in the “mild to moderate” middle.

“They are in the voluntary sector and they are doing such incredible work,” he says of groups like PND Wellington, but with no funding support. “They scrounge around, they go to Lotteries they go to all these different places just to keep afloat, and you’ve probably seen … how important they are. They back us up.”

Karen Magrath, the national advisor for Plunket Well Child and Parenting, agrees that for women with mild to moderate PND, services vary, “so some areas have strong resources, and others it’s almost entirely absent”. Plunket enrolls about 91 percent of women in its Well Child programme under contract with the Ministry of Health. But it also provides a lot of extras – services in the community from coffee groups to toy libraries to parent education and support groups – for which it, too, has to go out and raise money.

Interviews and information from DHBs (links to Excel document) show it is indeed services for women who aren’t considered severely ill that are the most patchy: non-existent in some areas, unfunded and on the verge of folding in others. But the landscape isn’t all bleak, with a few DHBs actually taking on and funding community-based NGO models.

For example, Magrath says Plunket has contracts with several DHBs to provide postnatal adjustment programmes to women with mild to moderate PND. “Those services help more than 800 women a year, and the demand is increasing,” she said.

‘Flourishing Families’

Tina Berryman-Kamp

In an unassuming wooden house a few blocks from Rotorua’s CBD, clinical psychologist Tina Berryman-Kamp runs a DHB-supported service called Flourishing Families, whose focus is perinatal mental health. Berryman-Kamp moved to Rotorua in 2003 after working in Maternal Mental Health services in Auckland to find Lakes DHB had no specialist perinatal mental health team, and was referring women to its adult mental health team which in turn was accepting very few of them.

“I thought, this is wrong, knowing the birthing population was around 1,000 per annum: where are all these people?” She approached the DHB about setting up a group in the community which, after a successful pilot, has been funded ever since. The house came a few years later, in 2014. “I think in Rotorua we are very privileged, I’m not aware that there are other services such as this elsewhere and that’s because Lakes DHB have been prepared to fund this service,” Berryman-Kamp said.

Nicola

Nicola is of the women who’s been through Berryman-Kamp’s group programme, and described the help she got there as “amazing”. Several factors put her at risk of post-natal depression, including past struggles with mental illness, living a long way from her family and original home in England, and conceiving her son through IVF after discovering, in her late 20s, she was unlikely to get pregnant naturally. “All through my previous experience with depression, [it was] medication, medication, medication. This was actually looking at the reasons I feel that way, what we can do about that, how we can challenge it, how we can cope with it,” she said of the help she got at Flourishing Families.

The particular pressure of having had a baby through IVF was something Nicola hadn’t expected. “I didn’t realise either, but we’re a high risk group, because you spend so long trying to get this baby, you are fully prepared, it wasn’t an accident, you want this in your life, and then it comes and – it’s not what you expected, and you struggle, and you feel guilty because you wanted it so badly.”

Nicola found her way to Berryman-Kamp after being first referred by her GP to the pediatric mental health team because, she said, it was Christmas. “They saw me, and I was a big mess, and they were great, they just talked to me about what I was feeling what I was going through. I cried my way through it, and they assessed me and they said that Tina was specifically for women just like me.”

Referrals on the Rise

In the neighbouring Bay of Plenty DHB, counselor Yvonne Thurston runs a Primary Health Organisation (PHO)-funded PND support group set up about three years ago, which can accommodate 6 to 8 women at a time for 8 free two-hour sessions, which take place in Tauranga.

Thurston says the numbers of women seeking help has risen, something the numbers of referrals in the region back up. Figures supplied by the Bay of Plenty DHB show that in just two years there has been an almost four-fold increase in referrals received by the area’s specialist maternal mental health team, up from 77 in 2013 to 275 last year. With that increase, has come a rise in the numbers declined or referred elsewhere, up from 23 in 2013 to 47 last year. With just under 3,000 births in the Bay of Plenty District Health Board in 2015, as Thurston says, there are many more out there needing help.

“We know for every thousand births there’s going to be 10 percent to 20 percent of them that are maybe going to need some support or benefit from some support, so it’s often how to get people to these things,” she said. “We know that the numbers are out there, we’re not seeing them.”

Women are referred to the PND group by GPs, Plunket nurses and by the specialist Maternal Mental Health Team, although Thurston said her group finds it tends to be the same GPs and Plunket nurses that to do most of the referring. Which raises questions about what’s going on with other maternity carers. “I don’t know whether they’re still not asking the questions,” she said. “I know women can find it difficult to be open about these things, for example women who have high expectations of themselves and see it as a failure if they’re struggling.”

More Training Needed

Berryman-Kamp says a lot more work needs to be done with women while they’re still pregnant. “We know that the information that’s going out ante-natally is not ideal, it’s very patchy. I think midwives need a lot more training around perinatal mental health, and to see that the holistic health of their clients is really important simply because they’ve such a working relationship with those women,” she said.

One survey suggests midwives themselves would like more help. Asked in the 2010-11 maternal mental health services survey if they had received “any training to ask questions about personal mental health history”, 55 percent of respondents (most of them midwives) answered ‘No’, and more than 80 percent felt they would benefit from more.

Alison Eddy of the New Zealand College of Midwives said maternal mental health was a component in midwifery education and included in ongoing education for midwives. Like Plunket nurses, midwives use the PHQ-3, but Eddy says even if a mental health issue is suspected, it can be difficult to find the right services, with some women reluctant to go to their GP for a variety of reasons, including cost, embarrassment or the fact that they don’t have a good GP relationship.

Berryman-Kamp sees more open discussion as crucial, but agrees embarrassment and stigma is a barrier, “the fear of, if I talk about it, ‘will people take my child if they know what’s going on for me, will they think I’m a bad parent?’”.

“We know that many many parents will experience scary thoughts, that doesn’t mean they’re going to do anything to their children, but those thoughts are common. No one is typically talking about that stuff because they’re terrified what’s going to happen with it.”

Coping with the Stigma

Stigma came up again and again in interviews with women dealing with postnatal depression – talk of which, as Berryman-Kamp noted, quickly turned to a fear that if they told the truth about what they were going through, and “got into the system”, they might lose their children. And given the media focus on New Zealand’s rate of child abuse, those fears are not without foundation. Even though studies show intrusive scary thoughts are both extremely common but rarely acted upon, what mother is going to own up to them?

Ferguson is still haunted by what happened to one of his patients, a story he tells in his NZ Doctor article, of a woman who lost custody of her children because of an episode of drug taking while she was ill with PND. “The Family Court judge did not accept evidence she had been suffering from an illness and had recovered from it, and she lost custody of her child to the paternal grandparents,” he wrote. In an interview in July, he said the woman’s case wasn’t an isolated occurrence, and there was a lot of prejudice in the courts and Child Youth and Family around maternal mental health.

“We’ve seen it,” he said of himself and his practice colleagues. “It’s driven us to tears, literally. The only things that have driven me to tears in my life in general practice have been incidents with mothers with CYFs which have been completely inappropriate interventions.”

February* had a history of mental illness, and some years ago was diagnosed with OCD and an anxiety disorder, and intrusive thoughts are a particularly frightening aspect of her illness, something several of the women interviewed for this series also reported.

“There’s lots of forms of OCD,” February says, “and unfortunately with mine, it’s more about intrusive thoughts and they’re full on intrusive thoughts: it can be being sexually inappropriate with your own children right through to getting a knife and stabbing your partner. It doesn’t mean you’re going to do it, or act on it, but it’s just that these thoughts are so alarming to you that your brain obsesses on that thought.”

February* said that for years, she thought she should be “locked up” because of her thoughts. She got herself well with a combination of medication and cognitive behaviour therapy (CBT), but realised when she was pregnant with her first child and felt her anxiety begin to rise, that she needed help.

“I was incredibly anxious about getting those unpleasant thoughts, because it’s your son … and that’s when I became involved with the mental health team because I’d done CBT before but when I had him, I felt like it was new situation, there was this new child coming into my life, what was I going to do? Was I going to have these unpleasant thoughts? Was I going to act on them? And you kind of freak out a bit.”

“It can be very debilitating, and some people do kill themselves over it because they can’t get out of that trap, because they don’t get the right help, because it’s not something you want to talk about with your friend, those sorts of things, it’s very taboo in society.”

Across All Cultures

Mental illness is stimatised across the board, but idealised notions of motherhood, and moral panics about child welfare can make maternal mental illness particularly fraught. And that can go double in more traditional societies, a point Auckland psychiatrist and maternal mental health specialist Dr. Sara Weeks makes in her 2013 book about post-natal depression “Mothers Cry Too”. She points out that postnatal depression is present in all cultures – at least all that have been studied (there are even references to it in ancient Greece) – even if descriptions and labels vary.

“Being diagnosed with a condition such as failelagau (literally ‘broken new mother’ in the Samoan language) will get you bed rest and support from traditional healers and family,” she wrote. “In Korea, sanhupung (disorder after childbirth) involves pain in the joints and muscles, fatigue, sleep problems, dizziness and anxiety, whereas hwabyung (anger disorder) causes headaches, palpitations and chest pain.”

In a series of lectures on the topic (available online) in 2014, she looked at Pacific mothers, noting that rates of PND were “alarmingly high” among some groups. “The sad thing is that looking at the numbers of pacific women in the Auckland District Health Boards’ Maternal Mental Health, there’s very few indeed have presented to them or been taken up by them, whereas we’re looking at about double the rates for mainstream so what are happening to these women,” she said in one of the lectures. (Figures from two of area’s main DHBs, Auckland and Counties Manukau, show women classified as “Pacific” comprised 17 percent and 9 percent respectively of those seen by maternal mental health teams. The DHBs respective Pacific populations are 21 percent and 11 percent.)

Jacinta Fa’alili-Fidow, until recently a manager at TAHA, a Pacific-focused child and maternal health service, has concerns about ethnicity being singled out as a risk factor for PND and says there are limitations to research which often can’t capture “the lived realities of people…especially when it comes to the roles and responsibilities of Pacific women”. “Some of our migrant mothers have lower rates of depression compared to New Zealand born,” she says. “There’s something there that we’re just not capturing.”

However she, too, acknowledges stigma is an issue, particularly around services. “Those services are available and they’re great, but we have the issue of women or Pacific people who are afraid of going to a Pacific service for fear that they will be identified,” she says. “They will know someone, or they will know their parent, so it is important that we provide a service where someone can go and feel anonymous and unidentified.”

*Pseudonyms are used where anonymity has been requested.

 

Other articles in this series:

1. ‘The Thief That Steals Motherhood‘ (Introduction)
2. ‘But, I’m Not Depressed‘ (screening, causes, treatments)
4. Quick links and resources
5. Audio – Women Tell Their Stories

Articles in this series were supported by a grant from the Scoop Foundation for Public Interest Journalism.

This investigative journalism project by Alison McCulloch was funded entirely by member donations to the Scoop Foundation for Public Interest Journalism. If you want to see more quality public interest journalism like this please donate to, or become a member of, the Scoop Foundation here.

The Foundation is currently running a membership drive for October and has some great rewards on offer including a multi-author book on the future of journalism in New Zealand.

Alison McCulloch will be interviewed by Kim Hill on Kim’s RNZ Saturday morning show at 9.05am on 22nd October, and that interview will be subsequently available on the RNZ website.

2 Comments on Finding Someone Who ‘Gets It’

  1. Other people can provide needed love/attention in cases of suffering/depression and that is natural needing no ” training”.
    Being human requires no training.
    The feeling of being isolated /alone is common factor depression and it comes from being isolated from your very being( SELF).
    The fear of being labelled and judged in a dysfunctional medical system that “judges and labels” is normal.
    Body, mind, spirit.
    The higher rate of depression/suffering in the MINDs of NZ woman from cultural beliefs in a patriarchy about the female/mother.Or Spirit: the collective female pain body.

  2. The emotions are the body’s reaction to thoughts.
    When suffering it pays to become the witness of the thoughts that you are emotionally reacting to.

    When you practice just being aware of the thoughts (being mindful) without self judging, see thoughts as just thoughts and watch the mental emotional patterns then the thief( the mind) no longer masters you, you master your mind.
    More understanding is needed.And a move to a non medical model for social work and psychiatry, a move away from labeling, judging & drugging to a mental health system based on kindness, compassion and understanding.

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