The Big reTHiNK is now online for your viewing pleasure on the reTHiNK Youtube channel.
Visit www.rethink.org.nz for more information about the Like Minds Big reTHiNK and how you can still get involved.
Don’t forget to share your favourite clips around and help spread the message.
The Mental Health Foundation has launched Opening Doors, a video examining the use of seclusion and the long-lasting trauma it can cause to both patients and staff. Visit the Mental Health Foundation website for more information.
The Family Court Proceedings Reform Bill is currently being read in parliament.
Find out what it’s really about.
New Zealand’s transgender community is now able to change their gender on their passports by a simple declaration.
Auckland’s 24 hour rape crisis line is again under threat of closure — less than 12 months since 7,000 people signed the petition that forced PM Key to promise its survival.
2 000 people signed the new petition in the first 24 hours – but it’s not over yet.
The 24 hour rape crisis line is integral to our community. It’s the service that Auckland’s sexual violence survivors can turn to for help. For thirty years, it’s taken a call every hour of every day.
A year ago, PM Key said he’d do his part to help rape survivors by funding the crisis line. But, we always said we’d need to stay vigilant and hold the government to their word. And now that the spotlight has dropped off, the Government thinks it can get away with slashing funding for this essential service.
The service needs just $116,000 from the government to survive. And we know we can get that commitment again if we continue the pressure. Sign and then share the petition with at least 5 of your friends and have them add their names to support a vital service. An immediate and overwhelming response will show the Prime Minister that we’re still watching.
This service will close unless we act now. The service’s board will soon start offering redundancies to counselling staff — the exact people rape survivors rely on for support and advice in their time of need.
Volunteers and staff are planning some media events and are trying hard to get the word out. But take a moment to share the petition with at least 5 of your friends and do your part to help an essential service that many rely on.
Key features of the Family Court Bill are:
NZORD – the New Zealand Organisation for Rare Disorders
NZORD Newsletter 2012 #6 — 28 November 2012
In this issue:
1 – Putting patient and family interests into newborn screening criteria.
2 – Common themes as groups respond to Ministry consultation on payments to family carers.
3 – Two significant clinical trials with New Zealand connections.
4 – Plain packaging submission to Ministry of Health tobacco control team.
5 – Recommended reading: The Immortal Life of Henrietta Lacks, by Rebecca Skloot.
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1 – Putting patient and family interests into newborn screening criteria.
Over a decade of NZORD’s advocacy for patient and family interests in health policy has taught us that talking the language of officials and professionals is an important step in having our messages taken seriously. So NZORD took the lead in publishing how family interests and ethics must influence screening policy. See Screening criteria: the need to deal with new developments and ethical issues in newborn metabolic screening. We are proud to have the valued support of the Save Babies Through Screening Foundations in the USA and UK, and the Genetic Alliance in the USA, in the preparation of this article, along with valued help from two New Zealand academics with editing and technical aspects.
The article is published online in the Journal of Community Genetics, October 2012. We propose that decision criteria for metabolic screening in the newborn period should be adapted to specifically include patient and family interests, community values, patients’ rights, duties of government and healthcare providers, and ethical arguments for action in the face of uncertainty. Here is an open access PDF version of the article.
2 – Common themes as groups respond to Ministry consultation on payments to family carers.
The Ministry of Health’s consultation on payments to family carers has now closed and decisions will be made over the next few months. Wide ranging discussions took place among support groups during the consultation period and there was widespread concern at themes contained in the Ministry’s document.
NZORD is concerned that the Ministry’s defeat on this issue at the Human Rights Review Tribunal, and in two major court cases, has negatively influenced the policy direction they are signalling, and even suggests an attempt to relitigate the case through the policy setting process. This is very disappointing. Family carers deserve a more respectful process that is based on sound principles. Read more about a better approach to this policy issue in the submissions made by the Carers Alliance and also by NZORD.
3 – Two significant clinical trials with New Zealand connections.
Possibly missed by many in the constant stream of news about research activities under way, is a planned new clinical trial by NZ-based Neuren Pharmaceuticals who specialise in drugs for brain injury and neurodegeneration. They have successfully completed a phase 1 safety trial and submitted for approval of their candidate drug NNZ-2566 for a phase 2 trial for Rett syndrome, a very rare neurodegenerative condition. It is exciting to see such projects emerging from New Zealand universities, and also great to see attention being paid to rare conditions. Read more in the Neuren press release.
Also this month, Living Cell Technologies received approval for a clinical trial of its porcine cell encapsulation technology for the treatment of Parkinson’s disease. This follows successful earlier trails of the same technology for the treatment of unstable diabetes. Read more about the ongoing diabetes trial. This is another project where the innovation and basic research originated in New Zealand.
4 – Plain packaging submission to Ministry of Health tobacco control team.
NZORD supports the introduction of plain tobacco packaging and the other recommendations set out in the proposal under consultation by the Ministry of Health. We support this proposal because the health outcomes of tobacco use, exert an indirect but significant impact on the rare disease population. Smoking is a significant risk factor for a range of diseases that are high on health priority lists and therefore take a significant slice of the health budget. As a result, patients with rare diseases are pushed further down the priority list. Here is our submission in Word and PDF.
5 – Recommended reading: The Immortal Life of Henrietta Lacks, by Rebecca Skloot.
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.
Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.
Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences. Read more about Henrietta in Wikipedia. The book is available at Amazon.
Contact:
John Forman
Executive Director, NZORD
New Zealand Organisation for Rare Disorders
PO Box 38-538, Wellington Mail Centre, 5045
228 Tinakori Rd, Thorndon, Wellington, 6011
New Zealand
Ph +64 4 471 2226
Mob +64 27 240 3377
Email: exec.director@nzord.org.nz
Website: www.nzord.org.nz
The North Shore Family Violence Prevention Network & Safer Whanau Project shared the following information in their latest newsletter:
UN Women and a range of other international bodies (ESCAP, UNDP, UNFPA, UNICEF and WHO) recently convened an experts’ meeting on the prevention of violence against women and girls.
A series of short papers on specific topics have just been published, including working with children in schools, social mobilisation campaigns, the role of faith based organisations, the media as a site to prevent violence, creating social norms to prevent violence and working with men and boys to promote gender equality.
You can access these at: http://www.unwomen.org/events/59/expert-group-meeting-prevention-of-violence-against-women-and-girls/
Subscribe to the North Shore FVP Network weekly E-News by emailing fvpnns@gmail.com
The mobility parking permit scheme is getting a spruce up!
CCS Disability Action has looked at ways in which they can improve the Mobility Parking Permit Scheme in consultation with mobility parking users.
As a result of this consultation, we’re pleased to announce the upcoming changes. We believe as a result the scheme will be fairer and more transparent for all.
Changes
Everyone with an existing permit will still be able to continue to use it, but you will notice changes in the scheme and in permits issued from early December this year.
Fairer eligibility
A number of people told CCS Disability Action that the current eligibility criteria are confusing. As a result of a review CCS Disability Action also felt that there were people who were missing out who had a genuine need, particularly people who require intensive behaviour support that could really benefit from being able to use designated mobility parking spaces.
You will be eligible if you meet the following criteria:
Changes to the criteria will make it clearer for people to determine if they are eligible, making the application process easier for all users.
Applying for a permit
To apply for a short-term permit, an extension on a short-term permit or a long-term permit for the first time you will need to get your doctor to confirm your eligibility by completing the medical section of the application form. However if you are renewing your long-term permit – as it was confirmed by your doctor in the application for your first long-term permit that you have a medical condition or disability which affects your mobility and is long-term (permanent); you do not have to provide any additional medical information.
From early December there will be a new application form that will be easier to download from the website www.MobilityParking.org.nz.
Only some of the branch offices will be processing applications received by post – these are listed on the application form. While you will still be able to take your application into your local branch and pay for your permit, the permit will not be issued to you over the counter. Your permit will be sent to you within 5 working days from the date that they receive your application and payment.
New look permit brings greater accountability
Everyone with an existing permit will still be able to continue to use it, but those issued with a new permit from early December will notice a completely new look.
The new permit is in CCS Disability Action colours (green, black and white) and will have the expiry date (month and year) printed on it. The permit will also include a barcode and permit number that will allow parking wardens to scan for real time information, similar to current vehicle licensing technology.
It’s hoped these technological improvements will result in a fairer scheme for all, supporting faster identification of those lost and stolen permits in circulation.
Further changes
In the first half of 2013 CCS Action will be introducing the facility for people to apply and pay for a mobility parking permit online! Keep an eye out on the website for more information on this as it comes to hand.
Contact Sara Georgeson
Mobility Parking Permit Scheme Project Manager
CCS Disability Action , National Office
TEL 04 384 5677
DDI 04 805 0080 MOB 021 1903 786
The Ministry of Social Development is looking to improve accessibility of elections processes for people with disabilities.
A consultation document has just been released, with responses due by 14 December. Click on the link below for more information.
There’s an accessible Word format document at the above url.
