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Anderton launches Schizophrenia Awareness Week

Anderton launches Schizophrenia Awareness Week

This is a cruel disease and affects 1 in 100 New Zealanders.


"Schizophrenia is a cruel disease," wrote E Fuller Torrey in his book 'Surviving Schizophrenia'. He says, "The lives of those affected are often chronicles of constricted experiences, muted emotions, missed opportunities and unfulfilled expectations."

This is a cruel disease. It affects one in a hundred New Zealanders. Each of them has a family. In many cases it will be family members, who provides care. And often, their care is a life-long commitment. Families of people with mental illness often become caregivers by default. They often give their support without payment and so it's sometimes difficult to tell the difference between caring ...and ordinary support for family and friends. Yet caring for someone is often stressful. It can be all consuming, too, taking 24-hours a day seven days a week.

So it's appropriate that the role of carers is being highlighted by the theme for this year's Schizophrenia Awareness Week. This week gives recognition to the contribution of the volunteers - the large numbers volunteers - who are working in mental health. The system depends on them. It depends more than it used to. The role of caregivers has increased significantly since many psychiatric hospitals were closed down in the last two decades.

It's common to talk about the success of enlightened care and de-institutionalisation. And the move to community support programs has made a difference to the lives of many people who live with schizophrenia.

But alongside the success, we need to talk about the increased burdens that have been imposed on carers, and on families in particular.

If there is more attention to the work families do, and more people talk about what services carers need...then we will accomplish the aim of this week. It can be exhausting to care for some one with mental illness. Often there is no thanks for the work you've done, or financial reward. The job is done for love. Families themselves can be deeply affected by the incidence of the disease.

We know from research and from our own experiences - whether as professionals or as families - that families may themselves be under huge pressure trying to cope.

Researchers have found families talking about their sorrow, anxiety, feelings of isolation and worry that people might not understand. Families report depression, fear and shame, anger and guilt. These are some of the effects on families, and all these pressures come on top of the direct costs in providing care. For all these costs, there are still unique benefits in giving love and care.

Treatment for mental illness is often more successful when families and loved ones are involved. So it is even more critical that we look after our caregivers. Better care for carers will improve the prospects for recovery of the ill, and improve the quality of their care. The research we are going to hear about this morning brings to light more about the role families play.

Alison Davies will present her research into the impact of schizophrenia on caregivers. This information is timely.

I always like to say we should let the facts get in the way of our prejudice - or ignorance.

The facts Alison has collected will be useful to carers, supporting organisations and policy makers alike.

This study is a very real acknowledgment that the family contribution to mental health care comes at a huge personal and financial cost to carers.

I hope the release of this research today will help to reduce some of the stigma around mental health issues. Schizophrenia has traditionally been a hidden illness. People were embarrassed to talk about it. It's interesting that the word "stigma" comes from a Greek word meaning 'to tattoo'. The idea of branding someone is an interesting image for the way our community deals with mental health.

I am confident that events like this assist in breaking down barriers. The more acceptance we can find in the community, the more we can help people with mental illnesses to participate in the community. That enriches everyone.

A more caring community is one desirable outcome of better information and research. It's politically unfashionable these days to say we should make New Zealand a softer and more caring place. But I've never been one for political fashions. The truth is, there are many parts of the world where people are crushed if they fall on hard times. Where families that meet with reversals or challenges are abandoned to cope alone.

I say we can be better than that in New Zealand.

We can be a more caring and more supportive community.

We are born as social, caring humans beings. (Not everyone remains that way - our venue this morning is parliament, after all, and you don't have to go far from here to see anti-social behaviour). But most human beings have a deep need not only to be loved and cared for, but to give our love and compassion, our care and companionship. Our family is the centre of our love and our care.

In fact, if you want a profound definition of 'family', it might be: 'those to whom we give our love, care and compassion.' So it is natural for families to have a central role in giving care. What we need, though, is to be clear about the burdens of that role, and to recognise and consider the costs involved.

Only then can we ask whether the costs are being shared fairly.
Only when we know the extent of the burdens can we ask if they are being adequately compensated.
Only then can we ask whether we are doing enough to give support and to prepare and maintain families in the caring role we ask of them.

I am pleased that more is being done.

For example, there are some valuable initiatives on workforce development in recognition of the role family's play. The Schizophrenia Fellowship is participating in programmes run by the Ministry of Health's Mental Health Workforce Development Programme. It's also trying to increase the number of family advisors who work in DHBs and Non Government Organisations. We will all welcome any developments that improve our support for carers.

The more that people with mental illness can participate fully in their community the better their quality of life will be. When we support carers, we support people with schizophrenia to live and participate in the community. The research we will hear about today - and the theme of this week - all help us know more about the support families and carers give. This is valuable recognition and it's valuable information for all of us.

So I want to close by acknowledging and expressing a special thank you to those who give care in families. We can be judged as a community and a society on how well (or otherwise), we treat our most vulnerable citizens.

And I express my hope that those who give care will be a little more recognised and a little more supported as a result of the activities surrounding this week.

Good wishes to you all.


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