Speech: Florence Leota - Supporting Families

EMBARGOED: 9 March, 5.15pm

Address by Florence Leota,
Chief Executive of Schizophrenia Fellowship NZ (SFNZ)
Supporting Families Awareness Week,
The Code of Family Rights
Monday 9 March 2009, Duxton Hotel, Wellington.

Tēnā koutou, Talofa lava and a warm welcome to everyone.

Tonight’s event is one of many activities being held throughout the country as part of Supporting Families Awareness Week.

I’d particularly like to acknowledge here this evening SF New Zealand’s President - Dr John Grigor, the Associate Minister of Health - Hon Dr Jonathan Coleman, the Opposition Health Spokesperson, Hon Ruth Dyson, and the Executive Chair of the Mental Health Commission, Dr Peter McGeorge.
We’re also pleased to have with us several of our SF Branch Chairpersons and Branch Managers who have converged in Wellington for their respective group discussions today and to also attend tonight’s function. Thank you all for coming.

One in five New Zealanders will experience a mental illness in his or her lifetime. It is a pervasive presence in almost all of our lives – and yet we rarely speak of it.

To our Parliamentarians - your presence here tonight sends a signal to us and if we’re reading the signal right it tells us that the new Government and the Opposition see the mental health sector as a key priority.
It also tell us that you recognise the important role of families in the recovery of people with a mental illness, that you’re interested in engaging with us and are prepared to listen to the challenges confronting us.

Right now one of the most pressing challenges is the recovery process of a person who is experiencing mental illness.
SF New Zealand is a staunch advocate for integrated care – this means complementing the use of clinical support for someone who is mentally ill with support in other areas that impact on their overall health and quality of life.
Research has shown that people who experience mental illness have fewer relapses when their family/whanau is involved in their care and treatment.
This is why we’ve made the Code of Family Rights the focus of tonight’s event

But first, let’s provide some historical background.
Schizophrenia Fellowship New Zealand or SF New Zealand as we’re commonly known is a national organization that was established 31 years ago to support families who have a relative with a serious mental illness.
Today we’re a leading voice of hope for family/whanau - providing support, information and advocacy through our 21 branches nation-wide and our National Office.

The role of families was recognised in the 1996 Mason Report which stated “….that a well-planned Mental Health Service, properly funded and resourced, will include consultation with family members as an essential component of that service…”
10 years ago, the SFNZ Code of Family Rights was developed in order to reinforce the needs and rights of families/whanau within the mental health system.
It would give them the recognition, rights and support needed to effectively play their role.

At this point I want to acknowledge Heather Simpson, who is with us tonight. Heather was the National Director of SFNZ and under her stewardship the Code was developed and launched.

The Code is a world first - New Zealand is the first country to have one – it is acknowledged by international organisations such as the World Federation for Schizophrenia and Allied Disorders, and by other countries when seeking to develop a similar code.

In the last 10 years, SFNZ has distributed thousands of copies of the Code. It is one of the most requested resources by families and the various mental health service providers.
It is an achievement that we are proud of and by holding a 10 year anniversary celebration tonight, we hope to highlight again the importance of such a code and the benefits to both families and service users.

However, we are also aware that it cannot stop here. We need to take this further. We need to see the Code regulated in the same way that the Code of Health and Disability Services Consumers’ Rights has been. Why? Because while the intent of the Code is clear, it can only remain a ‘wish-list’ as there is no obligation for mental health professionals, service providers or the government to take on the messages or observe the rights outlined within the Code. And while many agree with and observe the Code, there are many more that choose to ignore it.

SFNZ had a survey recently through our 21 branches and out of this came some clear examples of how the Code is ignored.
The Code states that, “the Family/Whanau has the Right to be consulted about a family member’s illness, the diagnosis, treatment and possible side effects of treatment.”
But many of our branches are reporting -
“Failure by many clinicians to educate families about the effects of medication on their family member”
‘Lack of response to family concerns and observations of the efficiency or side effects of medication”
“Family are not always listened to when they have feedback around medication issues”.

Here’s another example.
The Code states that, “the Family/Whanau has the right to culturally accepted treatment options which are inclusive of the family”.
Of our branches commenting on family inclusion, only one of them stated that their local DHB always involved family/whanau in service user’s recovery planning. Only one.
It gets worse - not one branch said that families were consulted most of the time, however, twelve branches said it sometimes happened and we had one branch who said it doesn’t happen at all.

So while the Code enshrines a number of rights for the family as partners in care, in practice these rights are either not being met at all or at best, not being met very well.

By regulating the Code, we recognise the important role that families can play in a relative’s recovery plan, it gives an obligation by service and treatment providers to recognise that role, and it provides families with rights to services, information, consultation and support.
But until the Code is regulated, it will remain a ‘wish-list’ with no obligation by service and treatment providers to observe. We hope to change that.

SFNZ is currently working with the Mental Health Commission in an effort to regulate the Code of Family Rights.
If the Government is of a mind to support this initiative, we would welcome it with open arms. With Government encouraging mental health services into the community, now is the time for Government to recognise the role of families/whanau by supporting the regulation of the Code of Family rights.

On this note, I think it’s timely to hear from the Associate Minister of Health the Hon Dr Jonathan Coleman and invite his comments.

Thank you all for coming and sharing this event with us.

ENDS

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