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Newsletter from The New Zealand Organisation for Rare Disorders

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

Articles on Prevention of Violence Against Women & Girls

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

Goodbye Disability Resource Centre, Hello Independent Living Service

The Disability Resource Centre has changed its name to the “Independent Living Service (ILS)”.

Disability Resource Centre Auckland was originally founded in 1981 as the Independent Living Centre.  Some years later there was a name change to the Disability Resource Centre.  The original name better reflects the purpose and philosophy of the organisation to empower those with disabilities to live a good life.  A name change to The Independent Living Service is timely and honours the organisation’s roots and those in the community that started it.

Administrative Matters:

This is a name change only and not a change in our legal/charitable structure or status.  This makes the change very easy on all fronts and will not require new contracts, accounts or legal documentation.

  • The official change-over date was Monday 5th November
  • Email addresses changed on Friday 19th October and are first name@ilsnz.org
  • The Mobile Service changed from DRC Mobile to ILS Mobile with the web address www.ilsmobile.org
  • Their new web address is www.ilsnz.org and was live from Friday 19thOctober. However you  will be directed to www.disabilityresource.org.nz until all changes are complete.
  • All existing phone numbers and addresses remain the same.
  • Please contact Julianne McEldowney for new brochures on julianne@ilsnz.org

The Ministry of Health’s New Model: what families need to know

Seminar  “Choice & Control – The New Model, what families need to know”.

The Parent & Family Resource Centre and Imagine Better invite you to a free workshop to discuss aspects of the Ministry of Health’s proposed New Model for supporting people with disabilities, and how this will affect families.

These workshops will run on the following dates and venues:

North Auckland

Monday 26 November 6.30 – 9.30pm

YES Disability Resource Centre

3 William Laurie Place, Albany

West Auckland

Monday 3 December 6.30 – 9.30pm

Integrated Neurological Rehabilitation Foundation, 2 Claude Brookes Drive, Henderson

South Auckland

Wednesday 5 December 6.30pm – 9.30pm

Nathan Homestead, 70 Hill Road, Manurewa

Central Auckland

Wednesday 12 December 9.30am – 12.30pm

Independent Living Service (formerly DRC)

14 Erson Ave, Royal Oak

Light refreshments will be available at the start of the workshop and families will receive a workshop pack including some presentation notes.

To book onto this free workshop, please contact Lisa at Parent & Family Resource Centre on 09 636-0351 or lisa@pfrc.org.nz

Please advise if you have specific accessibility requirements or if you require a sign language interpreter.

Click here to view the flier as Word document

click here  to view the flier as pdf.

APA Interview with International Expert on Bipolar Disorder

Myths and Realities About Bipolar Disorder

Five questions for bipolar disorder expert Eric Youngstrom, PhD

The following feature interview was produced by the American Psychological Association.  

Media coverage of people who have been diagnosed with bipolar disorder usually does not fully explain this serious mental-health problem, how best to treat it and how it can affect those who have it, as well as their families, friends and coworkers. To explain what bipolar disorder is and psychology’s role in identifying and treating it, APA asked Eric A. Youngstrom, PhD, to share his knowledge about this mental illness.

Dr. Youngstrom is professor of psychology and psychiatry at the University of North Carolina at Chapel Hill and acting director of the Center of Excellence for Research and Treatment of Bipolar Disorder. He earned his doctorate in clinical psychology at the University of Delaware and specializes in the relationship of emotions and psychopathology and the clinical assessment of children and families. Dr. Youngstrom has published more than 150 peer-reviewed articles on clinical assessment and emotion, he has served as an ad hoc reviewer on more than 60 psychology and psychiatry journals.

APA: What is bipolar disorder and how is it different from the general mood swings that many people experience?

Dr. Youngstrom: Bipolar disorder is a condition that leads to extreme changes in mood, energy and sleep. With all of these things, people will experience ups and downs in everyday life. What sets bipolar disorder apart is that the swings happen with more frequency and intensity than developmentally appropriate and they last much longer. The extremes also start to cause problems at school, home, with friends or other important areas in the person’s life. There is no sharp dividing line that separates bipolar disorder from ordinary changes in energy and mood. It is the combination of extremity and impairment that signals when it has become a problem. Interestingly, although we have long thought of bipolar disorder as a “mood disorder,” we’re learning that focusing on shifts in energy may be a more accurate way of detecting episodes of the illness. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) defines four different types of bipolar disorder: bipolar I, where the person has had a manic episode at least once in their lives; bipolar II, where the person becomes seriously depressed, but also has a history of hypomania (a milder mania); cyclothymic disorder, where the person has years of depressive and hypomanic symptoms without developing a full mania or depression; and bipolar “not otherwise specified,” for situations that do not fit into any of the other three definitions.

APA: Is bipolar disorder on the rise or does it just seem that way because of frequent media coverage?

Dr. Youngstrom: Both may be true, but changes in the actual rate are likely to be in the small to medium range, whereas changes in clinical diagnosis and media attention are huge. Several studies have found that the rate of clinical diagnoses of bipolar disorder has increased markedly over the last 20 years, especially in children and teenagers. The media often present these as percentage increases, which exaggerates the appearance of change because the current generation of practitioners was not trained to look systematically for bipolar disorder in youths. When something is rarely or never diagnosed and then starts to be recognized, the change in the rates can be misleading — 40 times more than something very small is still a small rate. A recent meta-analysis found no sign that the rates were increasing over the last 20 years. However, some of the risk factors associated with bipolar disorder, such as obesity, changes in diet, disruption of sleep and earlier onset of puberty, definitely have been increasing over the last few decades, so we cannot rule out the possibility that there is an increase in bipolar disorder. The increase is just much smaller than the changes in attention by the media and clinicians.

APA: How prevalent is bipolar disorder? Is it more common among certain demographic or geographic groups?

Dr. Youngstrom: The meta-analysis mentioned above found that bipolar disorders in children and teens are about half as common in adults, affecting 2 percent of the general population around the world (compared to 4 percent for bipolar in adults, or 6 to 8 percent for depression in teens). This makes bipolar about a third as common as depression and less than half as common as attention-deficit hyperactivity disorder in youths, but about twice as common as autistic spectrum disorders. Many longitudinal studies suggest that roughly a third of all depressions have a bipolar course when followed over time. There is no good evidence that it is more common in some demographic groups than others, although ethnic minorities with bipolar disorder are likely to be misdiagnosed with schizophrenia, conduct disorder or antisocial behavior instead. Women are more likely to be diagnosed with bipolar II, but there is no evidence of a gender linkage. It is more likely that women seek help more often for depression, so clinicians see more women with bipolar II. Internationally, bipolar disorder appears equally common among youths in the USA as in the rest of the world. In adults, rates of bipolar disorder may be lower in Asia than in the USA, but it is hard to tell whether this is due to protective factors — such as lower rates of obesity or higher fish consumption — versus greater social stigma preventing people from acknowledging problems and seeking help.

APA: What causes bipolar disorder? Are there differences in how the disorder affects children, adolescents and adults?

Dr. Youngstrom: Bipolar disorder is caused by a combination of biological and environmental factors. Genes play a major role, but genes are not enough by themselves to cause bipolar disorder. Identical twins share 100 percent of the same genes, but if one twin has bipolar disorder, the other twin does not develop bipolar 20 percent or more of the time. At this point, research has identified lots of genes that each contribute a little bit of risk for bipolar disorder. Diet may play an important role as well. Stress and trauma increase risk, as do intense emotional conflicts in families. Most of the risk factors for bipolar disorder also increase the odds of developing other conditions, such as anxiety or attention problems, which probably is why we see such high rates of co-occurrence among these disorders. Interestingly, the risk factors appear to be the same for children, adolescents and adults, which gives us more confidence that we are dealing with the same condition. The biggest way that the illness seems to change with age is that older individuals are more likely to experience depression and less likely to have mania, whereas in childhood it is more mania or a mixture of high energy with negative mood. Researchers and clinicians have described that pattern for more than a century.

APA: What are the most effective treatments for the disorder?

Dr. Youngstrom: The best treatments for bipolar disorder focus on smoothing out the highs and lows in mood and energy. There are several different psychotherapies that have promising results. These include cognitive behavioral therapy to pay attention to automatic positive thoughts as potential triggers for hypomania or mania; dialectical behavior therapy for improving emotion regulation; psychoeducational therapy to understand triggers and ways of managing the illness; family-focused therapy to improve communication and reduce intense emotional conflict; and interpersonal social rhythm therapy that emphasizes regular sleep and activity patterns. When the mood and energy become extreme, reaching the severity of a full-blown mania or depression, then medication is important in reducing the symptoms to a level where therapy and everyday functioning become possible. Therapy has a lot of promise as a way of preventing progression of bipolar disorder, delaying relapse and improving functioning in between episodes. Many incredibly talented and productive people have successfully dealt with bipolar disorder, so a goal of treatment should not just be symptom reduction, but helping the person to make the most of their gifts and abilities.

For more information, contact Dr. Youngstrom by email.

http://www.apa.org/news/press/releases/2012/10/bipolar-disorder.aspx

The American Psychological Association, in Washington, D.C., is the largest scientific and professional organization representing psychology in the United States and is the world’s largest association of psychologists. APA’s membership includes more than 137,000 researchers, educators, clinicians, consultants and students. Through its divisions in 54 subfields of psychology and affiliations with 60 state, territorial and Canadian provincial associations, APA works to advance the creation, communication and application of psychological knowledge to benefit society and improve people’s lives.

 

Reducing Post Natal Depression

How to decrease the chance of getting postnatal depression

MEDIA RELEASE: Mental Health Foundation of New Zealand

31 October 2012

The fifth Dragon Baby story posted on the Mental Health Foundation’s English-Mandarin Kai Xin Xing Dong website is intended to support and encourage new parents.

The story’s theme this week coincides with the lead up to Postnatal Depression Awareness Week 17-25 November

Gill Graham, from the Maternal and Infant Mental Health Team – Nga Whetu Taiohi – at Counties Manukau District Health Board, advises Asian immigrants about common mental health issues for new parents and how to lower the risk of postnatal depression

http://www.mentalhealth.org.nz/calendar/view/listing/889/

According to Gill, the most common mental health issue for a new mother is postnatal depression. She talks about how mothers and fathers can identify when things are wrong and gives some practical ways to feel better.

The Mental Health Foundation also supplies an excellent free postnatal depression pamphlet for English speakers.

http://www.mentalhealth.org.nz/file/downloads/pdf/file_84.pdf

We are posting one Dragon Baby story a week, for seven weeks, about the challenges Chinese parents face bringing up their newborn “dragon babies” in New Zealand society.

We understand that new parents need help and support and, sometimes, just by knowing where to find these can be all you need to feel more confident. We hope by reading these parents’ stories people will not feel so alone.

The stories also give lots of practical advice for the first years of a child’s life and beyond. They also touch on post natal depression and where to get help.

The series coincides with the launch of the Chinese Mental Health Consultation Services’ new Vagus helpline.

All stories are published online in English and Mandarin.

Vagus Line             0800 56 76 666      

This new service is to promote family harmony among Chinese, enhance parenting skills, decrease conflict among family members (couple, parent-child, in-laws) and stop family violence.

It provides free, confidential and professional advice, such as parenting strategies and communication skills. If necessary, clients can be referred to Vagus counselling services or related resources.

Service hours: Monday, Wednesday, Friday from 12 noon to 2pm

Year of the Dragon

2012 is the Chinese Year of the Dragon and has given rise to the phrase “dragon baby” for families expecting a new arrival.

The dragon is the mightiest zodiac sign in Chinese astrology, and is associated with traits such as success, ambition and independence. Many mothers consider this to be a particularly auspicious year to give birth.

In recognition of this, we have made a special Dragon Baby section on the Kai Xin Xing Dong website, where we offer Chinese language information for new and expectant mothers.

Kai Xin Xing Dong

Kai Xin Xing Dong is a Like Minds, Like Mine public education programme aimed at reducing the stigma and discrimination faced by Chinese people who experience mental illness. The project is funded by the Ministry of Health and guided by the Kai Xin Xing Dong Advisory Group.

For more information please contact:

Paula Taylor
Communications & Marketing Manager
DDI:   (09) 300 7025
Mobile: 021 300 594
paula@mentalhealth.org.nz

For comment in Mandarin, please contact: 

Ivan Yeo
Mental Health Promoter
DDI:   (09) 300 7017
Mobile: 027 2808 972
ivan@mentalhealth.org.nz

UK Expands Definition of Domestic Violence

New UK domestic violence definition includes coercive control

The UK Home Office has announced it will expand the definition of domestic violence to include ‘coercive control’ and to cover people 16 years of age and older.

The change is to the official definition of domestic violence used across government not the legal definition.

The expansion of the definition to cover 16 and 17 year-olds came after the British Crime Survey 2009/10 found that 16-19 year-olds were the group most likely to suffer abuse from a partner.

Link to further info on the NZFV Clearinghouse website: http://www.nzfvc.org.nz/node/793

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Thanks to the North Shore Family Violence Prevention Network weekly E News for passing this information on. Sign up to receive their E-News directly by emailing fvpnns@gmail.com 

Online Suicide Prevention Training Available!

QPR Online TrainingFoundations in Suicide Prevention

Ask a Question –   Save a Life

Fee $50 including GST

Worried about someone? 

Learn what to look for, when to be concerned and what to say to save a life!

Click here to Purchase QPR Online Suicide Prevention Training

The training programme includes:

  • Risk factors for suicide
  • How to get help for someone in crisis
  • The warning signs of a suicide crisis
  • The common causes of suicidal behaviour
  • Relationship of mental illness to suicide
  • When and how to Question suicidal people
  • How to Persuade people to accept help
  • How to Refer people to resources

QPR New Zealand on-line Suicide Prevention Training

Learn to save a life in as little as two hours, anywhere, anytime.QPR New Zealand offers a comprehensive online training programme, using the latest in educational web technology.  This training will arm you with the skills you need to help prevent suicide today.

QPR stands for Question, Persuade, and Refer – 3 simple steps that anyone can learn to help save a life from suicide. Just as people are trained in CPR to help save thousands of lives each year, people trained in QPR learn how to recognize the warning signs of suicide and how to question, persuade, and refer someone for help.

Community Consultation on The Ministry’s Mental Health and Addiction Service Development Plan

The Ministry of Health is releasing for stakeholder consultation Rising to the Challenge: The Mental Health and Addiction Service Development Plan 2012 – 2017.  The purpose of the Plan is to provide direction for mental health and addiction service delivery across the health sector over the next five years, and to clearly articulate Government expectations about what changes are needed to build on and enhance gains made in the delivery of mental health and addictions in recent years. The Plan incorporates key themes from Blueprint II and advances the Government’s focus on better performing public services. The plan has also been informed by input from preliminary sector consultations.

The consultation period will run from 8 October 2012 to 2 November 2012.  Feedback closes on Friday 2 November 2012 at 5.00 pm. Please note that any feedback forms received after this time will not be included in the analysis of feedback.

How to respond

You can respond using the consultation response questionnaire attached to the consultation document. Email your local coordinator to request a consultation document and feedback form.

Attend a regional consultation workshop in your region during October.

You may already be aware of these meetings.  If not, please email the contact person identified for further details if you wish to attend.

Your views and feedback are welcome and can be provided:

a) by email to:  SDP@moh.govt.nz

b)   in writing to:  April-Mae Marshall, Mental Health Service Improvement Group,  Ministry of Health,  PO Box 5013,  Wellington.

All feedback forms will be acknowledged by the Ministry of Health and a summary of feedback will be sent to all those who request a copy. We look forward to your feedback which will assist us to finalise this document.

Ministry Consultation on Payment for Family Carers

Please find below the information about the Ministry of Health’s consultation on payment for family carers.

The Ministry is holding workshops in various cities.

  • Workshops afternoon and evening, Dunedin, Tuesday 2nd October.
  • Workshops afternoon and evening, Christchurch, Wednesday 3rd October.
  • Workshops afternoon and evening, Wellington, Monday 8th October.
  • Workshops afternoon and evening, Hamilton, Tuesday 9th October.
  • Workshops afternoon and evening, Auckland, Wednesday 10th October.
  • Workshops afternoon and evening, Palmerston North, Tuesday 16th October.

Please let Auckland Disability Law know if you would like them to coordinate an additional independent community hui in Auckland to discuss the consultation and to assist people in completing their own submissions.

The closing date and time for submissions is 5 pm, Tuesday 6 November 2012

Contact

Auckland Disability Law
Phone 09 257 5140
Fax 09 275 4693
Mobile 0274575140
email info@adl.org.nz
www.aucklanddisabilitylaw.org.nz