Breaking the Silence recap

On April 24th Life Matters hosted our Breaking the Silence event. We want to extend a huge thanks to all those who attended and especially to our panelists: Maria Dillon, Abigail Clark, James Sutherland, Tiana Mihere, Hahna Briggs and Jane Stevens.

Each of our amazing panelists shared powerful stories of personal loss and their own experiences navigating the Mental Health system. What emerged throughout the evening were some common threads which tie these stories together. These same threads are woven through the stories of the attendees who were brave enough to speak at the event, and in the results of our recent online survey. The survey invited members of the public to share their own experiences of the Mental Health system so we can ensure they reach the Mental Health Inquiry panel. We received over 500 submissions and the results, while unsurprising, are harrowing.

By collating this information we are working to identify what these frayed ends look like in the hope that we can stop vulnerable people from falling through the cracks.

Difficulty accessing services

By far the biggest hurdle to getting care is having the concerns for yourself or your loved-one taken seriously, quickly. Again and again we have received reports of 3 month waiting lists for psychiatric assessment, “not enough beds” available in crisis wards, people turned away because their mental-state or destructive behaviours are not being deemed “urgent” enough and because they do not meet the “criteria”.  It seems that the system is set up to provide care only in the most urgent circumstances, and help is not available to those who are not immediately suicidal. We need to be helping people before they get to that point.

In the same vein, many people report being discharged before they were ready, when they still felt they posed a threat to themselves or others. Again and again we hear stories of people turned away from Mental Health services in times of crisis and, feeling they have no other option, taking their own lives.

Cost is also a barrier to a huge amount of people, who, having been given 6+ weeks to see a psychiatrist in the public system, have no choice but to wait. We have received feedback from people who did get appropriate care privately, thankful that they had the funds and resources to access the support that saved their lives.

Yet another barrier to help is drug-use or addiction. In many cases, if a suicidal person is using drugs, the Mental Health department will refuse to help, insisting they seek help for their drug use. If this is not viable or realistic, addiction services will not help them either, leading to them being bounced back and forth between services and too easily falling through the cracks.

Access to services is difficult enough but it is important to acknowledge that for marginalised groups the difficulties are compounded. Some of these groups include our youth, men, Maori and the LGBTQ+ community, who all face unique struggles along the path to mental wellness.

Lack of compassion

Judgemental, demeaning, dismissive, isolating, cold, clinical, unhelpful and unwilling to listen to family members; just some of the words used to describe encounters with the Mental Health system. Many respondents also acknowledge that Mental Health professionals are often underpaid and overworked, struggling on the frontline of a much larger battle. It is worth noting that there is also a lot of praise for those working within the system, but the callousness of the system itself leads to huge pressures on staff. It goes to show that this issue runs deep, and sees an unhealthy culture perpetuating unhealthy outcomes.

Lack of follow-up

Too often, after seeing a health professional or being discharged from a ward, people are left to their own devices. Time and time again, people have reported being told they would receive a phone call or visit from a professional checking in on their progress, but these phone calls/visits never come. At a time where wrap-around support is crucial to the ongoing wellbeing of the patient, it just isn’t there.

There is also inadequate access to respite facilities and, on occasion, service users have been discharged with no place to go. If a patient is discharged into the care of family, it is unlikely that the family with receive any ongoing support. They are left concerned and afraid, with the huge responsibility to save the life of their loved one.

Inadequate support for families and loved ones

After a suicide, comes grief. Huge, monumental, incomprehensible grief. While navigating this grief a family is also then confronted by the vicious bureaucratic realities of death: funeral expenses, tying up loose ends, debt collection agencies, legal matters and, too often, questions of culpability. The system provides no support or guidance at this point, and in some cases, isolate the family entirely, refusing accountability and silencing the family’s concerns.

Here at Life Matters we believe that legal support should be provided, free-of-charge, to families bereaved by suicide. Families mourning the loss of a loved one should not have to fight so hard for justice. Not alone.

Stigma

Stigma surrounding suicide and mental illness is pervasive and serves to bolster all these barriers to help. Seeking help can be difficult for anybody, and because our society views mental illness through the lens of stigma, many people may be reluctant to receive a diagnosis which could lead to the help they need.

While our youth have access to counselling through school, there is the perception among them that this is not confidential, as school counsellors have been known to pass information forward to teachers. While we may be able to understand the reasoning for this, it is actually likely that it will prevent some kids from seeking the help they need. In some schools, there is little discretion, making it obvious that a child has an appointment. For this reason, many kids are reluctant to seek help when they need it because they don’t want others finding out. This shows how stigma itself acts as a barrier to support; we need to change the discourse and shift the message; It is okay to not be okay.

We should be committed to ending the stigma surrounding suicide and mental illness. If we, as a society, can talk loudly about these issues that affect so many of us, then these barriers to support can be broken down.

 

Remember to look after yourself and loved ones. Use the helplines and ask for help from services. Contact us if you struggle to access help or need support in the aftermath.

We encourage everyone to contribute to the Mental Health and Addictions Inquiry and to connect with the panel if they come to a town near you. You can make an online submission or go to a public meeting. All information can be found on this website. https://www.mentalhealth.inquiry.govt.nz/

 

Need to talk? Free call or text 1737 any time for support from a trained counsellor

Lifeline – 0800 543 354 (0800 LIFELINE) or free text 4357 (HELP)

Suicide Crisis Helpline – 0508 828 865 (0508 TAUTOKO)

Healthline – 0800 611 116

Samaritans – 0800 726 666

Let’s start the conversation now

Jean Balchin

Kia ora. My name is Jean and I’ve been involved with Life Matters Suicide Prevention Trust for a couple of years. I’d like to begin this blog by telling you a story about me and my brother John, who died by suicide three years ago.

I’m the oldest of nine children – Jean, John, Andrew, Will, Jill, Lucy, Peter, Rebecca and Jack. Together with my parents, we have enough kids for a soccer team, almost enough for five-aside rugby, and more than enough for a nervous breakdown.

My childhood was messy, chaotic, and full of love. I had my usual teenage angst, and rebellious phase, but nothing serious had ever really happened. I hadn’t known real sadness, depression or anxiety. I hadn’t yet been touched by suicide.

Naturally, I was always very protective of my brothers and sisters. That’s not to say I didn’t tease them. On my little brother Will’s first day at school, I convinced him that a tube of wasabi I had was green ice-cream. He ate a whole teaspoon and began to bawl. I ran away. Obviously, this was not my finest hour. But when it really mattered, we stuck together. Playground skirmishes would sometimes escalate into full-on clan wars if someone dared to pick a fight with one of my siblings. And when my brother John began to show signs of depression, I was worried.

Three years ago, I was a second year student at Otago University. I was living in a flat in North East Valley, and I thought it would be great fun if my brother John – the next one closest in age – would come flat with me. So he moved down, and for awhile, it was great fun. We would go to parties together, and he would put me on his skateboard, and tow me home when I was tipsy and tired, and it was three o’clock in the morning. He did alright at his studies at first, but it soon became evident that university just wasn’t for him.

I’m not quite sure what happened to my brother, but a number of factors – university stress, poor sleep, anxiety, signs of developing schizophrenia, and of course being away from home – combined in him to produce severe depression, anxiety and other mental health issues. To cut a long story short, my lovely aunt and I did our best to help him. We took him to the doctors, counsellors and fed him well. He withdrew from university and headed home to work and rest for awhile. But at home, John didn’t get the rest, support and medical attention he needed. I don’t want to blame anyone for his death, and I won’t go into specifics, but his death was entirely preventable.

On the 24th of September 2014, John died by suicide. He was only 18. He was my best friend, a gentle boy who saw the best in everyone. John was the boy who befriended the outsiders. He was the class clown. He was the kindest human being I knew.

I felt like I had somehow let him down. I was in Edinburgh at the time, two weeks into a student exchange. I was on the other side of the world. I thought he was doing ok – just a week earlier, we’d been having a pretty normal conversation on Facebook. I’d ignored his most recent request to Skype.

For a long time, I refused to acknowledge the true circumstances of my brother’s death. I buried the memory in the attic of my mind and desperately tried to distract myself. And then, when I too began to spiral downwards into that deep, dark pit of depression, I kept my mouth shut. I was too afraid to tell anyone that my hair was falling out in clumps, that I woke up each morning with a heavy weight on my chest, pushing me down into the mattress.

I was too ashamed to admit that I couldn’t sleep, that I was beginning to hear voices, or that secretly I longed for everything to just stop. I was on the brink of suicide myself, and it wasn’t until a friend confronted me with five simple words, that I realised I needed help. “Are you thinking about suicide?” she asked. I got the help I needed, and while I’m not 100% better, I am doing well, and I have a wonderful support system.

Focus on the happy memories:

I can’t ever forget the sad resolution to John’s life.  life, but I can dwell on those funny, happy memories. So, here are a few:

When I was eight years old, we lived on a farm in Mangatangi. We had the most infuriating, useless chickens ever. They hardly ever laid eggs for us, and they weren’t affectionate in the slightest. John’s rooster was downright evil, and would attack us every time we left the house. However, one afternoon Andrew and I went to inspect the egg-boxes, only to find that there were twelve spotless, perfectly oval, creamy eggs nestled carefully within the straw. I was amazed. Our chickens had finally rewarded us! Andrew and I trotted home, crowing excitedly to Mum and Dad. It was only a few years ago that I found out my wily parents had enlisted John to hide a carton of eggs in our henhouse, in order to surprise us for once. He never breathed a word.

Throughout high school, I was incredibly straight laced and reserved. My rebellion was more of an intellectual one, rather than the traditional sex, drugs and rock’n’roll defiance of usual teenagers. To this end, I arrived at the ripe old age of 18 without ever having been to a party. My dear friend Sequoia decided to fix this, and so one evening I snuck out to my first party. It was ineffably strange. Inebriated teenagers were stumbling around in a muddy field, a decrepit old donkey was wandering around foraging for party snacks, and a cluster of tangle-haired hippies were hotboxing a caravan. I stood there in bemusement, watching the chaos unfold. And then, out of the corner of my eye, I saw my cheeky brother pull up on his bicycle. We made eye contact, and an unspoken agreement was made: I won’t tell if you don’t. We always looked out for each other. He was my best friend.

Finally, I was lucky enough to flat with John for a brief while down in Dunedin. It was the funniest, most infuriating time of my life. But John was always kind, sweet and gentle. Having moved on from the previously mentioned teetotal period, I would occasionally head out to town with my friends until the small hours of the morning. John would always leave his phone on in case I needed someone to walk me home. One night I called him at 3 in the morning. I was stuck in the centre of town, and didn’t want to walk through the dark, dank North East Valley by myself. Without complaining, my brother came to find me, skateboard under his arm. He placed me on the skateboard and towed me home, stopping off for refreshments on the way home. I will never forget how kind and caring John was, or how much fun it was to share a McFlurry with him, bumbling along the deserted roads of North Dunedin in the middle of the night.

So, to conclude:

It is the fear of losing more people to suicide that drives me forward. I am no longer ashamed of how my mind plays tricks on me, or the deficient levels of dopamine in my brain. Talking about suicide and mental health is a matter of life and death in New Zealand. Let’s start the conversation now.

I’d like to leave you with a Maori proverb that took on great significance to me after my brother died:

He aha te mea nu-nui o te ao

What is the most important thing in the world?

He tangata, he tangata, he tangata

It is the people, it is the people, it is the people

Mental Health Inquiry

 My son, Ross Taylor took his own life after he asked mental health services for help three times in the last weeks before he died.

 Our family begged the services for help yet our grave concerns were dismissed and ignored.  Ross was only 20 years old and even though he was in the high-risk age and gender group his pleas for help were ignored. It is not surprising that New Zealand has the highest youth suicide rate if people are treated like this.

No person should ever have to feel that suicide is their only option.

We need to provide better care.

Our mental health systems are failing our people and there are huge gaps. Despite our desperate and best efforts to ask for help from the services our pleas went unheeded. If my son was having a heart attack he would have received quality care however mental distress is often treated with less priority and with lack of empathy.

Please sign the petition for an urgent mental health inquiry for our new elected government to prioritize so that no person is turned away when in suicidal crisis.

We ask them to work together across all political parties and make the right decision for all New Zealanders.

I want an urgent inquiry into our mental health crisis so that no one else has to suffer like my son, Ross Taylor.

A mental health inquiry is needed so that we can see how many people are turned away from services, how many people have died by suicide after contact with services within 1 day, 1 week, 1 month, 3 months, 6 months, 9 months and 1 year. This inquiry needs to look at how many people have been discharged from services, often because they have missed their appointments due to being very unwell and then went on to take their own lives.

The public deserves to know how many people have simply been dropped from services or being told they don’t meet the criteria. None of the above information is gathered to identify what the problems are.

If we have this information we can make positive changes and lives will be saved.

The following to be implemented.

1.       Suicide prevention training for frontline staff to be mandated.
2.       DHB records to be electronic so that clinical information is readily available in a crisis.
3.       Zero suicide target in the health care system implemented.
4.       Increase primary health and GP funding.
5.       Commit to safe staffing.
6.       Independently investigate all serious adverse events (including attempts and self-inflicted deaths) of people who had contact with services up to 1 year after last contact.
7.       Independently investigate mental health services and give people with the lived experience an opportunity share how they and their families have been treated.
8.       Ensure that reporting of suicides by DHBs are mandated for up to a year and not voluntary for up to 28 days only.

Thanks very much for you support,

Corinda Taylor.

I lost my son

Corinda Taylor
I woke up this morning and reality hit me like a cold hard slap in the face.

I lost my son to suicide.

Not only did we lose our beautiful boy to suicide but we have kept relatively silent about it for four years. This is my first blog about the terrifying experience that no parent wants to have. I have kept silent because of the ongoing investigation into the care that my son, Ross Taylor, received at the hands of his psychiatrist and nurses.

This week the Mental Health Commissioner released his report after more than four long excruciating years after my son’s suicide.  The Southern District Health Board and the consultant psychiatrist Dr C  failed to provide services to Ross Taylor with reasonable care and skill and breached Right 4(1) of the Health and Disability Code. The independent psychiatrist who did the investigation for the commissioner stated that in her opinion the quality of clinical care that Ross received during the last three months of his life is a significant deviation from expected clinical standards. They have validated our complaint that the individuals concerned and the services failed our son.

This week our story also went public in New Zealand. We are extremely private people but felt compelled to speak up for the sake of current and future users of the mental health system.

I will be blogging regularly about our experience and how we were stonewalled repeatedly by the Southern District Health Board and clinicians before and after Ross died and how we battled to get positive changes to happen to ensure that nobody suffers a similar fate.

This week showed us who were prepared to support us to bring about positive changes. People from agencies have shown support for what they described and I quote “unethical conduct”, “neglect” and many more harder words that cannot be mentioned here. It has brought disgrace to the medical profession and tarred many good professionals with the same brush unfortunately. That was not our intention.

Some have said that they admired how I have channeled my energy into holding people accountable. I do not want admiration and I do not want sympathy. I want to see change.

I have been inundated with stories by many parents who have experienced similar tragedies and shared with me their pain and the battles to navigate a complicated mental health system. They also shared how families have been treated with such disdain and contempt with some trespassed or banned from services after trying to get the best care possible for their loved ones. I now realize that what happened to us is a common theme and only the tip of the iceberg. Let’s lance this sore and expose it for what it is.

Many have been unable to get fair investigations happen. They expressed support for our cause but stated that they did not have the strength to do what we did.

We would like to see more support for people and their families when in distress and we would also like to see good postvention support put in place. We have had no support offered to us by the Southern District Health Board during the four year investigation that would have paralyzed most people. This needs to change.

My hope is that our case has paved the way for many others to bring about change and hope. Nobody should have to beg services to help our loved ones in distress. Nobody should have to go to the lengths like we did to get a fair hearing to expose the truth.

Better systems, healthy communities and workplaces with committed health care professionals will result in safer and more effective outcomes with less people in crisis.

Corinda Taylor mother of Ross Taylor

Psychosis: Delusions

Corinda Taylor

Someone with first episode of phychosis can also have delusions.
Delusions are firmly held beliefs which are not based on reality or are a distorted version of reality.
For instance they believe they are God, or they are being plotted against, or they are under surveillance, or that they have a radio transmitter planted in the head, or that the TV is speaking them directly.
These beliefs are real… to the person experiencing them and may cause them to have strong feelings such as fear, anger, or elation.

Confused thinking
* Thoughts become confused, jumbled or nonsensical
* Thoughts may seem to speed up or slow down
* Person may have difficulty concentrating, speaking clearly or understanding a conversation, or remembering things
* Person may have difficulty understanding the intentions of others in social situations

Changed feelings
* Unexplained mood swings
* Overexcited, depressed or anxious
* Hard to feel emotion – numb and shut out

Changed behaviour
* More active and impulsive than usual
* Less active – sit around all day, sleep a lot
* Laugh or become upset at no apparent reason

Remember, this too will pass with good help and support.