Engage Aotearoa

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March 27, 2014 5:42 pm ⋅ ⋅ Featured

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The Engage Blog is my space for sharing updates, news, useful or interesting ideas, research updates and resources for people who experience mental-health challenges and their supporters. Browse from the top to find the latest posts. Use the search bar on your right to find something specific or explore the categories in the drop-down menu below. If you have something useful you’d like to see added, feel free to get in touch.

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Posted in: Engage Updates, News ⋅ Tagged: , , , , ,

Celebrating the end of conversion ‘therapy’ in NZ

March 20, 2021 3:19 pm ⋅

I breathed a massive sigh of relief last month when the government revealed plans to bring forward the ban on conversion ‘therapy’ in New Zealand and announced a timeline to have legislation in place before the middle of next year.

I want to take a moment just to send a huge congratulations and an even bigger thank you to all the LGBTQI+ advocates, activists and allies who have worked in so many ways, big and small, to get this safeguard underway. The Green Party’s Rainbow Spokesperson, Elizabeth Kerekere, quite rightly describes conversion ‘therapy’ as “torture for our rainbow community”.

If you would like some insider knowledge on what it is like to receive conversion ‘therapy’ and what it can actually look like in practice in New Zealand, check out Sherry Zhang’s article in the Spinoff and Trinity Thompson Brown’s first person account about surviving conversion therapy over at Re:News.

To be clear, conversion ‘therapy’ is not really a therapy at all. A therapy should be therapeutic, meaning it should have a net benefit effect on the person participating in it. Torture is never therapy. A therapy should resolve problems not invent them. Finding problems where there are none is not therapy. Discrimination, shaming, rejection, and ostracism are never therapy. These are forms of social control and coercion.

Zhang sums up what conversion ‘therapy’ really is for us when she writes, “Conversion therapy is a pseudoscientific technique that attempts to change or suppress someone’s sexual orientation or gender identity through shaming, emotional manipulation and/or physical trauma. The practice is primarily used within religious communities and has been linked to severe mental health issues, including depression and suicidal ideation.” Altogether now: this. is. not. what. therapy. looks. like. Full stop.

Here’s looking forward to 2022 when people subjected to this traumatising experience will have recourse in the law.

Posted in: Human Rights and Legal Issues, News, Politics and Policy, Rainbow / LGBTQI+ Community, Social Change, Trauma ⋅ Tagged: , , , , , , ,

Navigating autism as a couple: the university journey

March 20, 2021 1:02 pm ⋅

Cameron is a kiwi guy who was diagnosed with autism in adulthood. He and his wife Kirsten write regular blogs about their life navigating autism as a couple. Their blog lets you follow their journey from seeking out a diagnosis, making sense of it, and working through the challenges autism presents. One of the things I love about this blog is that we get to hear from both Cameron and Kirsten as they welcome us into their struggles and small victories. In their latest blog post, they celebrate Cameron receiving his university diplomas and reflect on all it has taken to get there (this involves a bit of swearing, which is not surprising given the challenges he faced).

For me, these experiences really highlight the importance of accurate diagnosis and access to appropriate accommodations within our education settings. If you are autistic or experience other forms of neurodiversity like ADHD, and you are studying or preparing to study, it is vital that you know you can find support for your learning from your university’s disability office. All educational settings are required to have some form of support in place and you have a human right to ‘reasonable accommodations’ to ensure you can take part to the best of your ability.

Cameron didn’t have a diagnosis at the time he was studying, and describes just how distressing the process of misdiagnosis ultimately was for him. You could argue that it was the stress of misdiagnosis that prevented him from completing the degree he had initially planned for himself, rather than the challenges of autism itself. Because of course, if we don’t know what it is really happening to us, it’s incredibly difficult to know what we need and what is going to help. And there are plenty of things that can help. It is possible to plan a reduced course load, more time to get course-work done, reader-writers for note-taking, exams and tests, assistance in labs, support to educate your teachers, and all sorts of other things to help make it easier to manage the challenges you face and successfully pursue further education without placing yourself under undue levels of stress and distress. Sometimes it takes an advocate or two to access these accommodations and Kirsten gives us an inspiring example of the difference it can make when people have someone to stand beside them in this way.

Follow Cameron and Kirsten at Help My Husband Has Asperger’s and read their latest post here My Train Finally Arrived at Alumni Station!

Posted in: Accessibility / Transport, Disability Issues, Families/Whanau, Recovery Stories ⋅ Tagged: , , , , , ,

The Royal Commission of Inquiry into Abuse in Care: Stories from survivor advocates and how to get involved

March 20, 2021 11:47 am ⋅

Right now, New Zealand is carrying out a Royal Commission of Inquiry into Abuse in Care. This is an opportunity for people who have experienced abuse as children, youth or vulnerable adults in the care of faith-based or state institutions between 1950 and 1999 to shine a light on what happened to them, so this can be formally acknowledged, learned from, and hopefully better prevented in future. This invitation extends to people who have experienced abuse themselves and their supporters. The scope of the inquiry is broad and the commission is interested in all kinds of abusive experiences across all kinds of state care settings including social welfare, education, corrections, disability, health and mental-health settings.

Please take a moment to check out the Abuse in Care website to find out more how to get involved. www.abuseincare.org.nz/survivors/how-to-get-involved/

Another good reason to visit the Abuse in Care website is for the short films where survivor advocates share their stories and their hopes for justice and change. Each video is just a few minutes long but you will meet some remarkable people with a lot of wisdom. If you are a survivor of abuse in NZ institutions, you might find a bit of hope in seeing these stories being given voice and being heard – do think about getting involved if it feels right for you. You can do this in person or in writing, in private or as part of a public commission hearing. Nonetheless, these are difficult experiences to revisit and retell. There are lots of ways to support this kaupapa if it doesn’t feel right for you to participate yourself: it is also a big help to spread the word and help raise awareness. This is something we can all do, whether we are survivors of abuse in care ourselves or want to be an ally to those who are. You never know who is carrying a story that is ready to be told.

The commission is interested in hearing about experiences of “physical, sexual, and emotional or psychological abuse, and neglect” including “inadequate or improper treatment or care” and abuse “by a person involved in the provision of State care or care by a faith-based institution.” The commission recognises that “a person may be ‘involved in’ the provision of care in various ways. They may be, for example, representatives, members, staff, associates, contractors, volunteers, service providers, or others. The inquiry may also consider abuse by another care recipient.” While the inquiry is specifically focused on historic experiences of abuse that took place from 1950 to 1999, they may consider experiences of abuse that took place before or after this period.

The commission defines state care as follows: “State care means the State assumed responsibility, whether directly or indirectly, for the care of the individual concerned”. This can be as a result of “a decision or action by a State official, a court order, or a voluntary or consent-based process including, for example, the acceptance of self-referrals or the referral of an individual into care by a parent, guardian, or other person” and “the State may have assumed responsibility ‘indirectly’ when it passed on its authority or care functions to another individual, entity, or service provider, whether by delegation, contract, licence, or in any other way.”

The inquiry can consider abuse “by entities and service providers, including private entities and service providers, whether they are formally incorporated or not and however they are described.” These may be residential or non-residential settings and may provide voluntary or non-voluntary care. For the purpose of the inquiry, ‘State Care’ includes the following settings:

  • Social welfare settings, including: (A) care and protection residences and youth justice residences: (B) child welfare and youth justice placements, including foster care and adoptions placements: (C) children’s homes, borstals, or similar facilities.
  • Health and disability settings, including: (A) psychiatric hospitals or facilities (including all places within these facilities): (B) residential or non-residential disability facilities (including all places within these facilities): (C) non-residential psychiatric or disability care: (D) health camps.
  • Educational settings, including: (A) early childhood educational facilities: (B) primary, intermediate, and secondary State schools, including boarding schools: (C) residential special schools and regional health schools: (D) teen parent units.
  • Transitional and law enforcement settings, including: (A) police cells: (B) police custody: (C) court cells: (D) abuse that occurs on the way to, between, or out of State care facilities or settings.

The inquiry may consider abuse occurring in any place within the above facilities or settings and in the context of care but outside a particular facility. For example, abuse of a person in care, which occurred outside the premises, by a person who was involved in the provision of care, another person, or another care recipient.

Here is that link again:
www.abuseincare.org.nz/survivors/how-to-get-involved/

Posted in: Human Rights and Legal Issues, News, Politics and Policy, Recovery Stories, Service-User Movement, Social Change, Trauma ⋅ Tagged: , , , , , , , ,

Lessons for SSRI Withdrawal from a large online community of thousands

March 20, 2021 9:59 am ⋅

The special collection on discontinuing psychotropic medications at Therapeutic Advances in Psychopharmacology has delivered up another valuable addition to the evidence base on antidepressant withdrawal.

Adele Framer is the founder of an online peer support network called SurvivingAntidepressants.org. She’s gone through antidepressant withdrawal herself and has born witness to many other journeys through these experiences since the late 1990s. In this review, she shares what she has learned about antidepressant withdrawal from this vast online community.

Abstract: Although psychiatric drug withdrawal syndromes have been recognized since the 1950s – recent studies confirm antidepressant withdrawal syndrome incidence upwards of 40% – medical information about how to safely go off the drugs has been lacking. To fill this gap, over the last 25 years, patients have developed a robust Internet-based subculture of peer support for tapering off psychiatric drugs and recovering from withdrawal syndrome. This account from the founder of such an online community covers lessons learned from thousands of patients regarding common experiences with medical providers, identification of adverse drug reactions, risk factors for withdrawal, tapering techniques, withdrawal symptoms, protracted withdrawal syndrome, and strategies to cope with symptoms, in the context of the existing scientific literature.

Explaining more about Surviving Antidepressants, Framer writes, “The name SurvivingAntidepressants.org came about because I had read that, of all those taking psychiatric drugs (one in six United States (US) adults) 95% were taking antidepressants. However, drug combinations being so common among site members, we offer support for tapering all psychiatric drugs, including benzodiazepines. The staff is all volunteers, usually experienced community members who have demonstrated interest and ability. We are careful to make it clear we provide only peer support and do not diagnose, prescribe, or provide medical advice or psychotherapy. We encourage members to “pay it forward” and support other members. We do not proselytize for going off psychiatric drugs; we offer tapering information only to those who request it. Our suggestions, which are intended to be discussed with prescribers, are based on publicly available information, such as drug package inserts, governmental agency data, and journal articles.”

Describing the community members, Framer notes, “About 6000 pseudonymous members have self-reported longitudinal case histories, including drug and tapering history, symptom patterns, and reflections on emotional state, some extending over years. Many sought help beyond primary care and emergency rooms, seeing multiple psychiatrists, elite clinics, and specialists such as neurologists and endocrinologists. Given the self-selection factors, these narratives likely tend towards more severe cases. Although their lives may be complicated by drug withdrawal difficulties, the vast majority are average people who received average treatment from primary care providers, psychiatrists, and other specialists. So widely dispersed geographically, yet so remarkably consistent in theme, the experiences of these individuals are a powerful indicator of the gaps in clinical practice regarding the prescription of psychiatric drugs.”

Regarding the withdrawal syndrome itself, Framer explains, “Withdrawal symptoms are not inconsequential […] withdrawal symptoms are the unwinding of drug-induced neurophysiological adaptation. Symptomatic experience of adaptation, dependence, tolerance, or withdrawal is individual. […] Across psychotropics, physiological dependence is developed in 1–8weeks; following discontinuation, immediate or acute withdrawal similarly lasts 1–8weeks. Physiological dependence on SSRIs has been found to occur in about 4weeks, risk of antidepressant withdrawal syndrome increasing after the same period. Antidepressant withdrawal symptoms have long been held to last a few weeks, which may represent only acute withdrawal while the drug’s target receptor at least partially re-adapts. However, across psychotropics, subsequent postacute withdrawal symptoms (PAWS, also known as protracted withdrawal syndrome or PWS), differing qualitatively from acute withdrawal, may last much longer, even years, indicating that further neurobiological re-adaptation occurs at individual rates, sometimes very slowly. PWS can be as debilitating and disabling as acute withdrawal symptoms. Our longitudinal case histories reveal that the arc of recovery from PWS is frustratingly halting and very gradual, with many setbacks, on a scale of 6months to years, much as
described in addiction medicine. […] After physiological dependence is established, withdrawal symptoms may occur following any reduction in dosage, during a taper, or after a drug switch, as well as discontinuation of the drug. The rate of drug tapering seems to influence the development of withdrawal symptoms throughout the taper and afterward, slower tapers probably allowing some neurological re-adaptation during the tapering process. We have found even mild withdrawal symptoms, which may indicate a lag in re-adaptation, may be compounded by subsequent reductions and become more difficult to reverse.”

Framer argues that close monitoring of the consequences of each reduction is important and notes that while it can be helpful to use mnemonics like “FINISH [flu-like symptoms, insomnia, nausea, imbalance, sensory disturbances, and hyperarousal (anxiety/agitation)]” it is important to keep in mind that these aids do not “capture the universe of PWS symptoms”. Because individual responses differ, it is important to pay attention to each individual’s specific experiences.

All of this seems remarkably consistent with the evidence on antipsychotic withdrawal. If you are wanting to learn more about the mechanisms of withdrawal, the experiences involved in antidepressant withdrawal, and the strategies that appear to help, definitely check this paper out.

Read the full text here (it’s free): What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications. Adele Framer, 2021, Therapeutic Advances in Psychopharmacology, 11, DOI: 10.1177/2045125321991274

Posted in: Online Resources, Psychiatric Medication, Recovery Stories, Research, Service-User Movement, Support ⋅ Tagged: , , , , , , , ,

Better Blokes support groups

March 1, 2021 1:53 pm ⋅

Better Blokes is a peer support service for men who have survived sexual abuse. They run support groups across Auckland. Visit their website for more information. While their groups don’t run during level 3, you can still use their online chat service and call their phoneline for support.

  • West Auckland Group
    Mondays 7:30 – 9:30 pm
  • Pacifica Group
    Wednesday 7:00pm – 9:00pm
  • Mt Roskill Group
    Mondays 7:30 – 9:30 pm
  • Northshore Group
    Thursdays 7:30pm – 9:30pm
  • South Auckland Group
    Mondays 4:00pm – 6:00pm
  • Epsom Group
    Wednesdays 10am – 12:00am

Visit the Better Blokes website to find out more about their services and how to contact them: https://betterblokes.org.nz/

Posted in: Men, Support, Trauma ⋅ Tagged: , , ,

Creative connections in the Community Resources Directory

March 1, 2021 10:16 am ⋅

The Creative Connections section of The Community Resources Directory has now been updated and moved online. This section lists national and local Auckland groups that provide support for creatives and opportunities to engage with the arts, explore your creative side, and get involved in the creative community.  While we are in level 3 lockdown in Auckland at the moment and we can’t physically go out to participate in these groups, many offer online resources and networks that might help to fill the gap.

That’s 13 sections you can easily browse online now and only 4 left to go.

Screenshot of Community Resources Directory contents page showing sections on Funding Mental Health Treatment in New Zealand, Acute / Crisis / Urgent Teams, Community Mental Health Centres (DHB), Community Support Services, Counsellors and Therapists in Private Practice, Creative Connections, Cultural, Refugee and Migrant Services, Disability Services, Help Lines, Psychiatrists in Private Practice, Rainbow Community Resources, Respite Services, and Service User Initiatives
Posted in: Community Participation, Engage Updates, Online Resources, Support ⋅ Tagged: , , , ,

The return to zoom: resources for lockdown

March 1, 2021 9:56 am ⋅

We woke up on Sunday the 28th of Feb to the start of another 7-day level 3 rahui in Auckland. I will be working through this time but have now returned to seeing people on Zoom. I’ll resume seeing people in person when we move back down to level 1.

The team at Changing Minds continues to deliver the Whakatau Mai Wellbeing Sessions. If you are 18+ and need a bit of extra support or me-time over the next week you can check them out here: www.wellbeingsessions.nz. If you are under 18, TheLowdown.co.nz and ThrivingAdolescent.com have a bunch of useful online resources you might like to explore. There are several websites and apps full of helpful ways of coping with stressful times such as these in the Engage Online Resources Pack too.

You can find the latest government announcements about alert levels here: https://covid19.govt.nz/ They’ve put together a host of wellbeing resources that are worth a browse.

Update: Auckland returned to Alert Level 1 at midday on Friday the 12th of March. I have returned to seeing people in person as usual at my offices in Henderson and Mount Eden.

Posted in: Engage Updates, Online Resources ⋅ Tagged: , , , ,

New study highlights stories of successful withdrawal

February 7, 2021 1:45 pm ⋅

My latest paper has just been published in the open access journal, Therapeutic Advances in Psychopharmacology, as part of their special collection on discontinuing psychotropic medication.

You can read the full text free here: Service-user efforts to maintain their wellbeing during and after successful withdrawal from antipsychotic medication (Larsen-Barr and Seymour, 2021).

Abstract

Background: It is well-known that attempting antipsychotic withdrawal can be a fraught process, with a high risk of relapse that often leads people to resume the medication. Nonetheless, there is a group of people who appear to be able to discontinue successfully. Relatively little is known about how people do this.

Methods: A convenience sample of adults who had stopped taking antipsychotic medication for more than a year were recruited to participate in semi-structured interviews through an anonymous online survey that investigated antipsychotic medication experiences in New Zealand. Thematic analysis explored participant descriptions of their efforts to maintain their wellbeing during and after the withdrawal process.

Results: Of the seven women who volunteered to participate, six reported bipolar disorder diagnoses and one reported diagnoses of obsessive compulsive disorder and depression. The women reported successfully discontinuing antipsychotics for 1.25–25 years; six followed a gradual withdrawal method and had support to prepare for and manage this. Participants defined wellbeing in terms of their ability to manage the impact of any difficulties faced rather than their ability to prevent them entirely, and saw this as something that evolved over time. They described managing the process and maintaining their wellbeing afterwards by ‘understanding myself and my needs’, ‘finding what works for me’ and ‘connecting with support’. Sub-themes expand on the way in which they did this. For example, ‘finding what works for me’ included using a tool-box of strategies to flexibly meet their needs, practicing acceptance, drawing on persistence and curiosity and creating positive life experiences.

Conclusion: This is a small, qualitative study and results should be interpreted with caution. This sample shows it is possible for people who experience mania and psychosis to successfully discontinue antipsychotics and safely manage the impact of any symptoms that emerge as a result of the withdrawal process or other life stressors that arise afterwards. Findings suggest internal resources and systemic factors play a role in the outcomes observed among people who attempt to stop taking antipsychotics and a preoccupation with avoiding relapse may be counterproductive to these efforts. Professionals can play a valuable role in facilitating change.

Posted in: Engage Updates, Human Rights and Legal Issues, Online Resources, Psychiatric Medication, Recovery Stories, Research, Service-User Movement ⋅ Tagged: , , , , , , ,

Lindah Lepou’s powerful story of survival

February 7, 2021 1:30 pm ⋅

Lindah Lepou is a Samoan transwoman, fashion designer, artist, and performer who recently shared her story in the form of a long prose poem called Blah Blah Blah, as part of the Pacific Arts Legacy Project from Pantograph Punch and Creative NZ.

This is an intense but powerful story that takes you on Lindah’s journey through growing up trans in NZ and Samoa, navigating stigma and discrimination, surviving physical and sexual violence, dealing with suicidal urges, and discovering her identity and personal power.

Lindah opens her story with an acknowledgement to ‘Le Va’. I love this concept. It’s like an ancient, indigenous predecessor to social constructionism and family systems thinking.

Jemaima Tiatia-Seath defines Le Va as “the relational space that connects people, things and elements. The sacred space between, the space that binds independent entities together, the space that is context, the space that gives meaning to things. A space not solely observed by the individual but also executed at wider institutional and societal levels. Pacific peoples inhabit multiple social spaces, hold various roles, responsibilities and standing within their families, villages, churches and communities, occupy a range of experiences, by age, socioeconomic position, gender identity, sexual preference, birthplace, ethnicity, disability, and religious/spiritual affiliation. Genuine Pacific cultural competency embraces and values all diversity.” (See: Tiatia-Seath, 2018, The importance of Pacific cultural competency in healthcare, Pacific Health Dialog; 21/1: 8-9.) That can start to sound a bit academic sometimes, but when you read a story like Lindah’s, or any recovery story really, the many intersections come to life.

Lindah writes, “Ona muamua Le VA. Blah blah blah blah blah… Soso‘o mai loa AITU. Blah blah blah blah blah… GAFA Sāmoa and Pālagi lineage. A family of multidimensional artists. Blah blah blah blah blah… Solo Sāmoan mother and absent Pālagi father. Blah blah blah blah blah… I was born in Wellington, New Zealand (1973). Blah blah blah blah blah… Transgender. I was an effeminate child named ‘Aaron Lepou’. Blah blah blah blah blah…”

Later, she continues, “Blah blah blah blah blah… I create ‘Lindah Lepou’ with all the courage and qualities I urgently need. I wanted to kill myself. Blah blah blah blah blah… Performing Artist. I started dancing to express myself and build self-confidence. Janet Jackson and En Vogue were my obsession. Blah blah blah blah blah…”

Read the rest of Lindah Lepou’s story on Pantograph Punch here.

Posted in: Pasifika Communities, Rainbow / LGBTQI+ Community, Recovery Stories, Trauma ⋅ Tagged: , , , , , , , ,

Auckland Pride Festival on now

February 6, 2021 1:41 pm ⋅

Auckland’s annual Pride Festival kicked off this week with a dawn ceremony at Maungawhau on the 3rd of February and runs right through to February 28th. You can check out the full 2021 calendar of events on the Pride Festival website at https://aucklandpride.org.nz/category/events/.

There are hundreds of events and heaps of them are free. You’ll find things like a Spoken Word Showcase on Feb 17th and 25th, the ICON exhibition from Same Same but Black from Feb 3rd – 28th, a workshop on Accessing Trans Healthcare on Feb 10th, lunchtime yoga at Ellen Mellville Centre on Wednesdays, and the Pride March from Mt Albert Park on Feb 27th.

Posted in: Entertainment and Creativity, Human Rights and Legal Issues, Rainbow / LGBTQI+ Community, Social Change ⋅ Tagged: , , , , ,