Engage Aotearoa

Category Archives: Service-user Movement

The Victory Fashion Parade | Whangarei | 28 Sep 2013

When Engage Aotearoa visited Whangarei with Mike King and Key to Life for the Community Korero earlier this year, the team met a wonderful woman named Vicky Flavell who wanted to put her passion for fashion design behind a good cause.

The Victory Fashion Parade brings together designers from the Far North for a night of style, with all proceeds going towards Engage Aotearoa’s project to get printed copies of The Community Resources Directory and The Butterfly Diaries out into communities across the country. Making help easy to find when people are struggling is an important part of preventing suicide in NZ. Now, the people of Whangarei can help make that happen just by enjoying a good night out with their friends.

  • 6 pm, Saturday 28 September 2013
  • Toll Stadium, Whangarei
  • Tickets $40
  • Contact no. 021 144 6080

Victory Fashion Parade Whangarei 28 Sep 2013

 

 

Service-User shares Open Letter to their Psychiatrist

Engage Aotearoa has received an open letter to share from a member of the community who has been using one of the Community Mental-Health Services in Auckland. The letter will be read in a week or two to the clinician involved. But they wanted to share their thoughts further than that.

It is sad to admit,” says service director, Miriam Larsen-Barr, “but we know the experiences of disempowerment and lack of choice highlighted in this letter are rather widespread. We receive regular emails from community members informing us of similar experiences. People don’t want to complain. They want to be heard, valued, respected, listened to and worked with, not worked on. Perhaps if we bring our voices together and get behind each other more we can help turn that balance of power around.

Open Letter to a NZ Psychiatrist

Dear Doctor

I have written you this letter because every time I attempt to express myself while inside the walls of a mental health facility my words dry up. I choke on my frustration, I sigh at the futility of trying to explain myself to people who have never understood me and I give up. Instead I have put into words well in advance what I want to say to you, so that the message comes across clear. I have written the words down so I can read them calmly, and you will hear them not as mania or psychosis or the rant of a lunatic, but so you will hear them as a carefully prepared statement, and maybe just a few will sink in.

Let me begin by discussing my views on psychiatry in general, so that you understand I have no respect for anyone in your position. I admit, it’s true I have a personal prejudice against psychiatrists, so it would have been hard for you to earn my respect. Here’s why. I think that the entire history of psychiatry has done more harm than good. I think that psychiatry today does more harm than good. You forcefully medicate and detain people against their will, and you claim it helps them. You habituate people to substances which you have absolutely no idea how to help them discontinue. And you repeatedly ignore our service user requests for our own courses of treatment, while claiming you know better because of your education. You think you have a better knowledge of what’s good for me than I have for myself. And you think it because you’re sure you’re better than me in some way, less broken, more together, or more sane. You think my history proves I’m infantile or incapable, and your first and most strong desire is to convince me and make me accept I’m infantile and incapable. Every psychiatrist I have ever seen has been a broken record, and every time I’ve asked for help to meet my own health goals, I’m told I have the wrong goals.

So now I have to come to you personally, doctor. The first memory I have of our meeting, I remember you telling me that because of my history, it seemed obvious to you I would need medication for the rest of my life. Do you tell this to every service user the first time you meet them, Doctor? I’m glad my file is so complete and reliable that you can come to a conclusion about me and the rest of my life based on a few notes that other people have written about me. It’s a bit of a pity that my hopes, dreams, desires, wishes and aspirations don’t come into it at all.

It’s also a pity that you don’t share the rest of your expertise with your patients. Surely you learned something in all that time at university about diet or exercise or meditation or mediation or self-awareness, or in fact any way to flourish other than taking a happy pill. You must have some knowledge from your personal experience of dealing with distress or family members in need. You must have some idea about how to address the skeletons in my closet in a friendly and welcoming environment with someone I feel I can talk to.

Because if you don’t have any advice for me other than what the brand of the day is from the pharmaceutical company who gave you that free pad to write on and coffee mug to drink out of, I really am sad. Because you might as well be a pill vending machine. And maybe one day, when you’re a little older and wiser, you’ll count the years of time you stole from your doped up patients, not to mention the years you took off the end of their lives, and you might feel a little sad too.

Sincerely Yours

International Petition Demands “Let us see Drug Data! Drug hazards are not trade secrets”

A petition has been making its way around the internet urging drug companies to stop lawsuits blocking public access to drug trial data. The petition names physical health medications, but this issue is also highly relevant to the availability of drug trial data about psychiatric medications.

The petitioner, David Healy of Cardiff, Wales writes: 

Drug companies maximize the sales of new drugs by hyping their benefits while downplaying significant risks. In 2010 the European Medicines Agency began releasing patient-level data from the clinical trials used to approve new medicines in Europe – a development hailed by American and European researchers and researchers around the world as a major step towards drug safety.

This process has been shut down by a lawsuit taken by two American corporations – AbbVie, makers of Humira, the number one selling medication in the world with projected sales of $10 billion in 2013; and InterMune, whose pulmonary-fibrosis drug Esbriet has recently been approved in Europe at a cost of over $40,000 per year.

AbbVie and InterMune have filed suit to deny access to the data from their trials on the benefits and harms of these drugs, claiming these vital facts are “trade secrets” whose release would harm their profits. Their action has led to the shutdown of the entire public-access program, leaving millions of patients worldwide, and their doctors, in the dark.

We call on AbbVie and InterMune to drop their European Union lawsuit and release all patient level data on Humira, Esbriet and their other products. Vital data on drug safety should never be hidden as a “trade secret.” By copying this petition to President Barack Obama and members of his Cabinet we call on them to ensure that meaningful public access to clinical trial data becomes the policy of the FDA and is written into any international trade agreements governing the sale of prescription drugs and devices.

Copies to:
President Barack Obama;
Margaret Hamburg, M.D., Commissioner, Food & Drug Administration;
Secretary General Ban Ki Moon, United Nations;
World Health Organization Director Dr Margaret Chan.

Click here to sign the petition.

Health Select Committee Meeting About Petition for Better Mental-Healthcare Choices in NZ

Update: The Health Select Committee is not accepting submissions from the public for their meeting on the Petition for Better Mental-Healthcare Choices in NZ at this stage, as was advertised in the August 5th notice below. Submissions are to be accepted only from the petitioner (Annie Chapman) and the Ministry of Health.

As public submissions are typically invited, the team at Engage thought the same would be true of the meeting about the Petition for Better Mental-Healthcare Choices. We apologise for any inconvenience and frustration caused to anyone who had prepared or sent a submission in.

Click here to read Engage Aotearoa’s Submission on the Petition for Better Mental-Healthcare Choices.

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5.08.2013

The Petition for Better Mental-Healthcare Choices in NZ had it’s first reading by the Health Select Committee on the 10th of July and submissions are invited by the 23rd of August.

Find out more about making a submission here.

If these options are difficult for you, contact the chairperson of the Health Select Committee Paul Hutchison paul.hutchison@parliament.govt.nz 

Contact Annie Chapman for more information on hikoiforhealth@gmail.com 

Click here to visit the Hikoi website.

Kiwi Woman Receives Award for Contribution to Mental-Health Services in NZ

New Zealander Anne Helm has received the 2013 Award for Exceptional Contribution to Mental Health Service in Australia or New Zealand by The Mental Health Services (TheMS) Conference.

Anne Helm has worked tirelessly to highlight psychiatric abuse and advocate for change within mental health services in New Zealand. She has been at the forefront of the consumer movement in New Zealand for over thirty years and remains as passionate about the issues today, devoting time and energy to the cause of recovery and resolving issues from the past.

Anne’s work includes:

  • Panel member of the Confidential Forum for Former Inpatients of Psychiatric Hospitals established by the New Zealand Government.
  • Subsequent advocacy for a government response to the Forum findings including appearing in the Mental Notes documentary
  • Advocacy and advisory work at local and national level
  • Work to promote the elimination of seclusion within mental health services in New Zealand.

Mike King Korero Heads to Taranaki Region in September

Mike King and Tai Tupou are hitting the road again in September to encourage schools and communities to make it cool to korero about the tough stuff, so we all make it through.

  • 10 September, 1 pm, Cool to Korero, Francis Douglas College, New Plymouth
  • 10 September, 7:30 pm, Community Korero, War Memorial Hall, Stratford
  • 11 September, 7:30 pm, Community Korero, Waves Building, New Plymouth
  • 11 September, 12:30 am, Cool to Korero for Hawera High and Patea Area School, The Hub, Hawera
  • 12 September, 11:30 am, Combined Community Cool to Korero, Opunake College, Opunake

While the team at Key to Life are getting ready to hit the road, the team at Engage Aotearoa will be adding recovery resources from each of these towns to The Community Resources Directory, so they can be delivered to those who need them when the team hits the ground in each of their locations across Taranaki. If you know of any services in the Taranaki region you think others would find useful, email them in.

Study on Social Inclusion and People Living with Schizophrenia

PatientView is seeking respondents for a new study aimed at people living with schizophrenia and their carers.

The study aims to identify some of the challenges faced by people who are affected by schizophrenia- particularly the challenge of being socially included in society. The intention is to identify how healthcare policy can improve and present this information to policy makers.

If you are interested in talking part, follow these links: 6Patients  Carers and families 

This survey will close on Monday 19 August

Another Issue of Chatters from Crossroads Clubhouse

The July-August issue of Chatters for 2013 is out from Crossroads Clubhouse.

Click here to open a PDF copy of Chatters July-August 2013

Funding Cuts to Talking Therapies Hits the News

The NZ Herald has reported growing community concern over increasingly restricted funding for talking therapies across the country. Click the headline below to read the full story.

VoiceBoxMEgaphone

Alarm Over Depression Therapy Cuts – NZ Herald, 29 July 2013

Major insurance providers, Sovereign, have disclosed they will only fund medication and exercise as treatments for depression in future, given the cost associated with talking therapies and the number of people who need them.

In the article, Mike King of The Nutters Club and Key to Life Charitable Trust comments “I can say from experience that talk therapy absolutely works. But few people can afford it. We don’t need less talk therapy. We need to be working with the Government and insurance companies to find ways for more people to get affordable or free therapy.”

A representative from Sovereign insurance states that antidepressants are “proven to work” and uses an example of a person who is only mildly depressed following a period of unemployment as a time when talking therapy would be considered unnecessary and antidepressants considered sufficient. “This shows a misunderstanding of the research,” says Engage Aotearoa service director, Miriam Larsen-Barr, “antidepressants have been shown to be effective only at the severe end of the spectrum. People with mild to moderate symptoms can most definitely be helped with talking therapy and are much more likely to respond positively to that than antidepressant medication. People tend to have these experiences for a reason. Talking therapies help people address those reasons in ways that medication alone cannot, for all that it has its place and uses.” 

One might argue that restricting treatment choices to medication or exercise alone limits service-users’ ability to make the best recovery choices for them or freely give their informed consent – choice is considered a fundamental part of consent and choice requires multiple options. This is reflected in the Health and Disability Commissioner’s Code of Consumer Rights. In the recent Partnership Report from Changing Minds, service-users specifically call for a greater range of choice when it comes to their recovery. The NZ Herald article has already inspired much debate.

Comments on Facebook posts sharing the article are calling for some kind of action to address the issue of funding for talking therapies. Funding for therapy has been an issue for quite some time. Improved access to talking therapies was one of the requests made in the Petition for Better Mental-Healthcare Choices that was delivered to parliament in June. The Health Select Committee will be meeting to discuss the petition in the next month or two, but have yet to release the date of their meeting. If you are passionate about this issue and want to add your voice to those calling for better access to the things that work, email your submission to the chairperson of the Health Select Committee Paul Hutchison at  paul.hutchison@parliament.govt.nz or contact your local MP. 

 

Philip Patston’s TedX Talk About Labels Available Online

In 2012 diversity activist Philip Patston gave a talk on the topic of labels at the TedX Auckland event. Earlier this July, The NZ Herald uploaded Patston’s TedX Talk to their website.

You can watch it here.

“Philip Patston is best recognised for his ten-year career as a comedian and entertainer, but it’s his passion for social change that is getting him noticed. An alumni of the New Zealand Social Entrepreneur Fellowship, Philip is a passionate believer that we have a powerful opportunity to reimagine diversity. His focus is on engaging people to achieve positive social change by reinventing the labels with which we categorise ourselves and each other.”