This is an edited and abridged version of the submission Andy delivered to the Inquiry.

Let me first tell you my focus is schizophrenia. I understand your Inquiry wants to include a lot more illnesses and a lot more people – I do hope you are not casting your net too wide. You cannot be all things to all people.

Our new government initiated this inquiry in response to widespread public concern about mental health services – including the many suicides among clients of our mental health services and some murders committed by known mental health patients with schizophrenia. I believe if we solve the problems with chronic schizophrenia all the rest of our mental health problems will be much more easily dealt with.

I worked for nearly 40 years in psychiatric hospitals (between 1959 and 1997) as a psychiatric nurse and psychiatric social worker. In all those years I can’t recall having the specific mental health issues that lead to this inquiry – so I must ask, what has changed? This inquiry has stated that it would “look at the current approach to mental illness” – logically, therefore, we must ask the question: what has changed from our historical approach?

The crucial changes actually began with deinstitutionalisation of the large psychiatric hospitals worldwide, starting in the United States in the 1960s. Here in New Zealand that process began in the 1970s and 1980s and the Mental Health (Compulsory Assessment and Treatment) Act 1992 helped make that transformation possible, and the old psychiatric residential hospitals were all closed by 1999. And, as it turned out, we in New Zealand were more successful than Americans in caring for patients in the community.

You may think that all I want is to build residential hospitals again. Very many patients would certainly benefit from that – but my primary aim is to change the Mental Health Act 1992 so that anybody behaving ‘insanely’ will be uplifted by police and committed to an acute mental health inpatient unit or hospital.

I know that this sounds absolutely preposterous to modern ears. But we have forgotten that is how things were for 150 years, after the Colonial Government passed the Lunatics Ordinance in 1846 – and that in all those years every charitable and right-thinking citizen thought this was in the patients’ best interest.

Older police constables will remember that not only were they allowed to contain an insane person and place him or her in a mental hospital – it was their bounden duty to do so. They just needed the signatures of two medical practitioners which didn’t take them long (the whole operation took only minutes – a “mental health call-out” now takes police an average of five hours!).

Only few of our mentally ill meet the legal definition of ‘insane’. Schizophrenia is qualitatively different from all our other mental illnesses – and our problems caused by this illness alone dwarf all other mental health problems: the economic costs, and the amount of pain and sorrow inflicted on patients’ families by this one illness is enormous. Schizophrenia is an elephant in the room – and nobody these days seems able to quite comprehend just how big it is. Generally speaking, it is only in industrialised societies we get the social problems with ‘insanity’ because only here do we expect individuals to exist on their own and care for themselves – which is the one thing many people with chronic schizophrenia cannot do. This mental health problem is caused by our modern cities with their free, independent, ambitious citizens, all managing their own lives.

I suggest you read up on Dorothea Dix, the great 19th century American social reformer – and dreamer who tirelessly lobbied states and governments in America, Canada and Europe to build asylums. The social situation we now find here in New Zealand is very similar to what she found in the early 19th century – and which made her set out on her crusade :

  1. An huge number of mentally ill people are again in jail because of various offences, usually brought on by their illness.
  2. Many people with schizophrenia again drift aimlessly in our cities – the only difference from Dorothea Dix’s day is that we now pay them a small amount of cash and attempt to arrange board and housing for them (often quite unsuccessfully).

Dorothea Dix’s legacy to the Western World, namely residential mental hospitals, lasted over a hundred years. Then tranquilising medication made it possible for governments to renege on their promise to care for our ‘insane’ population.

In 1992 we made the legislative changes enabling our government to discharge chronic mentally unwell patients who up until then had been wards of the state – and to close our nationwide chain of psychiatric residential hospitals. That was a grievous mistake for which we, and our ‘insane’ population are now paying dearly.

This inquiry as early as December promised that “nothing would be off the table” when discussing our mental health problems. The promise was also that “the current approach to mental health” would be investigated. Logically you cannot investigate our current approach without comparing it with our historical approach. The two ideological corner stones for modern treatment of schizophrenia are de-institutionalisation and community care for all.

Events since the legislation changes have now made it obvious that this ideology has failed. It has become obvious that for very many people with chronic schizophrenia that institutionalisation is an outright blessing – and that it is a curse being forced to share in a community which is alien and irrelevant.

Nobody was ever forced to leave our old psychiatric institutions – patients were never under pressure to leave. But if you wanted to leave you would be discharged (unless deemed dangerous or obviously unable to cope). Governments were only too happy to let you go – because the institutions were very expensive to build and maintain.

It is a myth that people were “locked up and forgotten about, keys thrown away”. This system worked – simply because nobody in his/her right mind will ever wish to remain in a hospital. In my opinion chronic schizophrenia should be treated in specially designated hospitals – and the sufferers should never be forced to leave these institutions. And, unless they leave, they should remain legal wards of the state all their lives.

If you work in an acute mental health unit these days you will know it is common to discharge patients with schizophrenia against their wishes, even if they indicate they are suicidal. To follow the “recovery principle” for chronic schizophrenia is an abomination – it doesn’t even make sense. Yet we openly and proudly do it – we blindly and cruelly treat the sufferers of this illness according to our ideological beliefs – reality and simple human charity be damned.

Andy Espersen is a retired psychiatric nurse who believes that the changes brought about by the Mental Health (Compulsory Assessment and Treatment) Act 1992 and the closure of residential psychiatric hospitals in the 1990s has harmed people with schizophrenia.

This is an edited and abridged version of the submission he delivered to the Inquiry.

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10 COMMENTS

  1. Hi, I’m a paranoid schizophrenic, diagnosed in the uk and now living in NZ with 2 fufilling jobs, many close friends, and hobbies (both social and personal) which make me really happy.

    This entire article is bullshit.

    I do not care if it is an opinion piece, this type of media is harmful.

    I’m not going to counter with any points regarding how schizophrenia should be treated. I’m not a medical proffesional, it’s a hugely subjective illness, and it’s not my place to offer medical advice.

    Instead what I will say is that the single best aspect of the support given to me in this country, is that it has all been in service of supporting me to achieve long term goals in regards to work, relationships, physical health etc.

    The point is that I have control over these goals. I decide what they are, how fast I pursue them, and they have a huge influence on the conversations I have with my support team. The key goal of my treatment has always been empowerment. The only outcome this opinion piece seems to strive for is maintenance.

    The way this piece frames institutions as some sort of haven is seclusionary. The language is othering, falling back on claims to violence (which is not caused by illness; it is a reaction, not a symptom), and insisting that schizophrenics are incapable of living a fulfilling life or even managing basic needs is blatantly untrue and stereotypical.

    A system which empowers people to create and sustain succesful goals is the single reason why, since leaving the mental health system in the uk (which is entirely focused on maintenance over quality of life) my wellbeing has improved drastically.

    Schizophrenia is a broad and subjective illness, with huge variances in symptoms as well as their severity. Whatever support systems this inquiry leads to need to be patient focused. Quality of life is measured by patients, not by mental health staff or measured against generic aims/goals laid out by services. Having “we aim to provide a safe space” pinned to a wall in an institution has fuck all implications for the actual wellbeing of those staying there. There are an overwhelming amount of voices saying institutions do not work, that they are isolating and degrading. We are not cattle. We know when we are being treated like infants, we know we aren’t being listened to, and we will always be the judges of our own happiness whether you like it or not.

    We are just trying to make the most of the life we have. Just like everyone else. And until services and support staff start treating us like people, they’re only continuing to fail us. Do better.

    Oh and for the record Health Central, take down the picture at the top of the article. An unnerving picture of a dark blurry head? How about you use an image which doesn’t compound on the negative tone of the article and fester people’s fear and ignorance. The way you’ve framed this opinion is unethcial.

    Trash opinion. Trash news service.
    Be better.

  2. With all due respect, if you now have two fulfilling jobs and many close friends and hobbies you are eo ipso no longer suffering from paranoid schizophrenia. Don’t forget that about one third of all new cases of the illness will recover spontaneously, with or without medication, within a few days or months of the acute breakdown.

  3. Except I still experience many symptoms which would lead to the same diagnosis. I still experience delusions. Occasionally (very occasionally) they require me to take a mental health day, which is supported by both my workplaces. Voices are a constant for me, although the strategies developed by me with my support team do a good job of keeping them manageable, even positive at times. And I still experience paranoia. Creating a system of open and clear communication, knowing exactly where I stand in any given relationship or situation, has been huge in living positively when paranoia starts to scale negatively.

    I understand the logic behind basing care based around the degree of suffering an individual faces. But when you diagnose based on degrees of suffering or states of being you create positions of living which do nothing but terrify people. Schizophrenia cannot be diagnosed based on whether an individual has the capacity to function. It is only a term for a collection of symptoms. If you want to argue for ditching the name, be my guest. The term has too many subdivisions, is muddled with symptoms in various combinations and degrees of severity, and has been reduced in popular culture to a label for a very specific image of a violent, eccentrically confused, or even an almost rabid individual. I know quite a few people who have experience of schizophrenic symptoms in various ways. None of them have come close to that image.

    But my point is the severity of my symptoms hasn’t changed since I was in the UK. The name of the illness isn’t actually the point. My environment and the way I exist within it changed. I don’t want to diminish the work I do to maintain my wellbeing and pursue my goals. I work fucking hard. But also the places I work and live in adapt consistently to my needs, and we work together to create relationships which make the most of what both need. What I think a lot of people don’t understand is that this happens for every relationship, every employee, right? I do not know a successful relationship, business or personal, which isn’t built on a foundation of understanding and empathy for the other person. Being aware of what skills they have and what kinds of communication they use in all of their interactions. The fact that the adjustments I make are framed in part by schizophrenia, is no different from accounting for an employee who may not be great over the phone, or is anxious with new clients, or who comes in hungover on one too many Mondays. An argument can be made that the easy solution is to fire these kinds of people. Except that doesn’t actually solve the problem, it displaces it.

    It might be a forced metaphor, but institutions are like a prison system for people with mental distress. And you’re justifying it with the idea that these people do not and will never have the skills to function in any other setting. Please listen to the rising voice of these people saying that this is not true, and that being institutionalised is not a positive experience.

    Your opinion underestimates and stigmatises schizophrenics in a way that is entirely unnecessary. We focus on the assumed inability of ALL schizophrenics instead of the systems they live within which can’t or won’t support them. You reduce schizophrenia into a noun describing anyone who simply can’t cope with life, and so needs to be locked away. The only thing this does is create a culture which is 1) terrified of talking about schizophrenia, or the idea that it might happen within their families/communities, and 2) because they’re terrified of talking about it, never actually address the problem when it arises. Consumers are trying as hard as possible to make sure their voices are heard in regards to the services they use. And this is a new phenomenon, it’s a movement which didn’t exist when the last inquiry was made, and advocates are working incredibly hard to disrupt the stereotypes which emerged when people with these experiences had no voice. Or worse had their voice taken away. We are telling you we don’t want institutional systems. Please listen.

    I am still schizophrenic. Quite happily so. And you underestimate us.

    Also, huge thanks to Health Central for changing the photo at the top. Really impressed and thankful to see that. Apologies if the first comment was overly harsh x

  4. I certainly agree with you that the change of picture was a blessing – and I have told Health Central that in a separate email (which I would like them to forward to you in its entirety). After reading the above I agree with you that you are still suffering from schizophrenia – and that you are accepting this in the best way possible. We old mental hospital staff had a rule of thumb : one third of new cases would recover completely, another third would never recover and the last third would suffer from mental problems all their lives. I have known a thousand people like you so please don’t underestimate my understanding of your situation. I have also lived and worked in old mental institutions for almost 40 years – and met with old schizophrenic sufferers as they were before the coming of medication. For two years I have been on a sort of “schizophrenia awareness campaign”. To properly reply to your letter above I would need to write at least 10,000 words which Health Central would not agree to! Please go to my website at “NZ Mental Health Care Petition”. I have written several essays, all in downloadable form, on the subject of schizophrenia which I think you would benefit from reading. By just Googling “Andy Espersen” you will find many more references to my writings.

  5. “Eo ipso,” says Mr Esperson. Therefore: if you have close friends, good friends, any friends, you can’t have paranoid schizophrenia; if you have two jobs, one job, something to pass the time with, you can’t have paranoid schizophrenia; if you express satisfaction with your life you can’t have paranoid schizophrenia. And if you once did then you don’t now. Isn’t this just the same old self-serving prejudice that anyone who gets by, gets out, is spotted on the move, could not possibly have schizophrenia, of the paranoid or any other version. And most likely never could have. Because schizophrenia means, for Mr Esperson, and anyone else trapped in nineteenth-century textbooks, that “you can’t.” Whatever it is, you can’t. And, most likely, never will. Forget it, you can’t. Unless, apparently, through no effort of your own, or anyone else’s, you spontaneously recover. About a third of people acutely broken down, according to Mr Esperson, do. Some without medication, even! All by themselves? By the grace of god? Surely not. And the other two thirds? Don’t ask. You’ll probably never see them again. Institutionalised wards of the State they’ll be. For life. Why? Because schizophrenia means you can’t. And paranoia means everyone else can. And is.

    What luck, then, to be locked away. Just think: when you look out, across the spacious lawns, knowing you are safe behind barred (or otherwise reinforced) windows, you’ll be able to see them all coming for you.

  6. I should have written : “If you have two fulfilling ordinary jobs which you can manage to hold down in a normal manner, many close friends and hobbies, and if you never again show any schizophrenic symptoms, then, eo ipso, you no longer suffer from schizophrenia. As for the statistics re schizophrenia and its cure rate just Google any authoritative website you like – or ask any psychiatrist. We used to say one third of cases recover – latest statistics say about 25%, I think.

  7. How patronising! How dare you decide yes you do or no you dont have/still have paranoid schizophrenia. What gives you the right to make any assumptions on someone’s experience. Just because you’ve worked in wards and hospitals in the past and written some papers and been on a campaign does not make you the expert on anyone else’s life/distress/recovery/needs. The individual is the only expert in their own life. Imagine if I argued that I’ve worked with people for many years and have known thousands of the male type and written articles about men’s problems therefore I know more than you about your gender and you should learn from me.

    I’d take your knowledge and opinions on schizophrenia and what what people experiencing distress need and want a lot more seriously if you actually had such experiences yourself.

  8. Those aren’t my words. Daniel Goodwin himself states, “I am still schizophrenic – and quite happily so”. And I admire him greatly for saying that. In fact, I admire him for all he is saying, for the strength of his convictions and for his fortitude in coping with his terrible handicap.

  9. Terrible handicap??? Does anyone still use that word outside of sports? Such limiting and disabling language and views of extreme experiences of distress will do only that, limit and disable. No wonder under the older ways of viewing such ‘diseases’, or ‘handicaps’ many remained stuck in their illness and hospital wards with no hope or autonomy. Understanding of distress and the absolute potential for all to recover (where recovery is self defined thank you!) has shifted greatly in the past couple of decades, thankfully, and rather than treating Daniel, or “people like you” as having a terrible handicap, chronic, sick with a pile of symptoms we can at the very least work alongside people to help them figure out what might actually help instead of assuming power to decide for them. It doesn’t matter if we think someone should be in a hospital or a sanctury or on a tropical island – I cant imagine you would like someone determining where you should be kept or how your ‘handicap’ (let’s face it we all have something) should be treated.

    • Serra – did you read up on Dorothea Dix (as I suggested)? Was she deluded? Was her life’s work in vain?

      I am telling you that the illness she was concerned about has not changed one iota – except medication now makes it more bearable for its sufferers.

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