Entrenched problems including compulsion
The stories in this review show there are entrenched problems in the ways we think about and respond to people experiencing mental distress in this country.
Respect and dignity
People described being treated in ways that were dismissive, dehumanising and punitive, and felt they had no say or power over their own treatment. At the heart of many of the stories in this review was a simple request to be treated with dignity respect, and as a person of value.
“So, what I am trying to say is that, I am worth it. People who are mentally unwell are worth the time and money our healthcare system spends on them. Recovery is possible - even if not complete - but, it does take a lot of work and commitment. From ourselves, and from our healthcare system.”
Many people (85 stories) wrote about feeling undermined and diminished by their encounters with mental health services. People experiencing a crisis feel they are not being heard. They experience a total loss of agency, and a disregard of their capacity to reflect on and make sound decisions about their own. Medical staff do not have the time to properly listen to or assess their needs. Nor do they usually have anywhere to refer them to.
“There have been several times where I have reached out to the mental health team because of my increasing suicidal ideation and risk in acting on those thoughts. The first time I got turned away, because they did not believe I was a risk. But would I have asked for help if I didn't truly believe I was a risk to myself? Do you know how hard it is when you're in that position to actually ask for help and then to be dismissed because they don't think you're at risk?”
The stories submitted to this review reveal that not everyone seeking mental health care in New Zealand is currently being treated with the kind of respect.
“I was seeking professional support and services that would help me and my baby have a well pregnancy and journey into motherhood. Instead I was met with an interrogative assessment process that left me feeling bullied and coerced. My voice and experience were not valued.”
Culturally appropriate care
As well as general respect for people experiencing mental distress, some stories in this review highlighted the specific need for our mental health services to respect people’s cultural norms and practices as they relate to mental health and well-being. It is particularly important that people working in mental health services in New Zealand understand and respect tikanga Māori, as this story from Egan Bidois illustrates:
“If I had been listened to, then the hospital staff would have realised that what they were viewing as extreme decompensation was actually me fighting for my sanity. That those ‘wild gesticulations and violent screaming’ was me performing haka/traditional Māori dance to centre myself through condensing, consolidating and then calming the waves of wairua/spiritual energy flowing over and through me. That those ‘repetitive mutterings’ were me reciting karakia/prayer to keep myself safe within those experiences.
If I had been listened to. If I had been understood. If my whakapapa/direct ancestry had been taken into account. If I had been supported by a fellow Māori they would have realised that I am not simply that Westernised clinical term ‘Schizophrenic’. Rather I was born a slightly different breed, another term, another ‘title’ or ‘tag’ if you will. Matakite.”
The need for mental health services that are consistent with tikanga and kaupapa Māori has been recognised for many years, thanks to the work of leaders like Sir Mason Durie and Marama Parore, the CEO of Te Rau Matatini. Te Rau Matatini provides a strategic focus for Māori mental health and well-being that is underpinned by Māori workforce development, education, clinical and cultural capability and capacity for the advancement of indigenous health and wellbeing for our people and their communities to achieve whānau ora.
Compulsion, seclusion, capacity and human rights
Thirty of the stories submitted to this review raised concerns about compulsory treatment, and the practice of seclusion. This is unsurprising, given that ew Zealand's mental health services use among the highest rates of legal coercion in the developed world, a concern which has been raised by human rights bodies repeatedly in the past.
“When I refused to take my medication, no one asked me why and I didn't tell anyone either. In the end I was put in the locked unit and injected. While there is a place for medication and it helped me, in my experience it is not the most effective way for treating mental illness. People going through mental ill health also need a lot of listening to, compassion and affirmation. It is also important for people to understand that people suffering from psychosis are still aware and have insight even if it doesn't seem that way at the time.”
In 2004, the New Zealand Human Rights Commission published Human Rights in New Zealand Today / Ngā Tika Tangata O Te Motu, a comprehensive review of the state of human rights at the time. The report identified two critical human rights issues in mental health clinical practice:
The inappropriate use of seclusion, and
The tension between compulsory treatment and the rights to refuse treatment, to make an informed choice and to give informed consent.
In 2005, in the Mana ki te Tangata / The New Zealand Action Plan for Human Rights, the Commission pointed out that improvements in mental health service infrastructure and clinical practice would be key to minimising the use of seclusion and addressing issues of competency and capacity.
In 2010, the Human Rights Commission updated Human Rights in New Zealand Today / Ngā Tika Tangata O Te Motu, and recommended, as the top priority for action in relation to the right to health, that the Mental Health (Compulsory Assessment and Treatment) Act 1992 be amended to better reflect the concept of capacity in line with international standards.
“The issue of capacity and the tension between compulsory treatment and the right to refuse mental health treatment, to make an informed choice and give informed consent have been raised by mental-health service users on many occasions."
There is now a series of cases in like-minded jurisdictions on this topic which have changed the way in which capacity is viewed internationally, and which indicate that simply because a person is defined as mentally disordered, it does not necessarily follow that they have lost the ability to consent to treatment.
The Convention on the Rights of People with Disabilities, with its emphasis on individual capacity, has also shaped thinking in this area. While the Director of Mental Health has acknowledged that the discussion on capacity is in its infancy in New Zealand, he has also noted that “future revisions of mental health law will need to be consistent with recent international and domestic human rights developments”.
Some of the specific concerns raised about compulsory treatment in the stories include a sense of having lost control over one’s own life, and the way that diminishes identify and self-esteem, both of which are crucial for mental well-being. Another recurring concern was how difficult it can be to end compulsory treatment, and the problem of placing the onus on patients rather than on medical professionals.
Another concern raised was the risk of DHBs using coercion as a defensive reaction to high profile cases of tragedies involving a mental health patient.
"When these events are reported they tend to be sensationalised, they tend to be interpreted as catastrophic failure of systems, that clinicians are incompetent. The result [is for] many clinicians to take a much more conservative and much more defensive approach."
Some people had positive experiences of compulsory treatment – and proposed ways to offer safe, monitored spaces for people experiencing an acute mental health crisis to recover.
In the forensic hospital ICU I was taken off my medications and started on another and am a different girl. … We do need a community based lock up facility for people to go to when they are seriously acutely unwell where they can recover holistically. It would be lovely to have therapy provided like making meals or tending to horses. Just a place which is 24/7 monitored and a lockup but not a prison, more like a home hospital. As an alternative. With people with lived experience of surviving mental health crises and getting back on track, to show there is hope.