Assumptions, Bias, Labels … why the search for justice is elusive

A BLOG POST

I have written previously on this site to try and give context to findings that were less than satisfactory to people who have just wanted understanding and fairness. I had hoped I wouldn’t have to write again.

The Coroner’s Court of Queensland is undoubtedly populated by experienced and deeply knowledgeable individuals – that is not disputed. Neither can it be denied that Talieha Nebauer, Will Fowell and Caitlin Wilkinson Whiticker were each precious, courageous, developing individuals.

And it is INDIVIDUALITY that is at the very heart of the matter that must be illuminated by what has transpired over the 6½ years since the inevitable closure of the Barrett Adolescent Centre was first revealed to be underway.

Each human being is unique. Even identical twins are not actually identical. Each of us has a physical make-up that is not organically replicated exactly in any other person. We are a one-of-a-kind collection of thought patterns and hopes and likes and backstories and quirks and motivations and needs and lifespans. But the world often seeks to put us into categories. To label or pigeonhole. To impose. And sometimes, to assume to know based on superficial information.

The need to classify is often understandable. It’s too hard to start with a totally blank page when dealing with thousands or even millions of people. So we are grouped and assigned and we have to compromise on the parts of ourselves that fall outside the parameters we are supposed to fit within.
And sometimes those compromises aren’t a big deal.
But sometimes they are.

As individuals, none of us has the capacity to be truly objective. Despite it being vital at times in professions and key life moments, our humanity can never totally be shut down. So we bring our histories and agendas and ambitions and perspectives of the world to all that we do.
And sometimes that isn’t a big deal.
But sometimes it is.

 

 

So when an individual provides their input on an issue or event,
what is FACT and what is INTERPRETATION?
And when several different individuals have their say on a particular situation,
who is providing what could be seen as the closest to OBJECTIVE information?

In the case of the Barrett Inquiry and the Coronial Inquest, for example,
whose evidence has been determined to be the EXPERT information on which findings will be based and whose evidence is viewed as FLAWED so has been broadly disregarded?

That has been for the Commissioner and the Coroner to decide. Based on years of legal knowledge, experience and precedents; standard practice; even societal conventions. There are high expectations of everyone involved. Protocols and time limitations to adhere to. It is no easy task and one where compromises must regularly come into play.

Not unlike those compromises we all have to make when we don’t fall into the stereotypes that can be assigned to us.
Like the mothers who have tolerated snap judgements about their relationships with children whose lives are in turmoil. (Because those mothers burst into tears when they finally admit out loud that they’re terrified their child could be dead every time they’re out of sight for more than a minute). But they continue because no other treatment has been effective.
Like the carers who have long given up on hoping vicariously for a life of professional achievement, fulfilling relationships and creative satisfaction for the suffering young person that they love. (They just want them to have a life. And then one that isn’t a never-ending nightmare.) But they continue because they are realistic and determined that the young person’s life will be better in some small way.
Like the parents who have sacrificed a stimulating and useful professional career and their own stable, healthy existence because the young person with such complex needs means more to them than anything else. (24 hr diligence and stress will always take a toll. And a life wholly focussed on another – a loved one who moves from torment to hopeless – drains like nothing else can.) But they continue because know their priorities and their responsibilities. Their child comes before anything for themselves. Anything.

So this blog post is just to note that:
Individuals make compromises based on their priorities.
Individuals categorise based on their particular agenda.
So all we can hope for is that, in every situation possible, everyone will do their best to take in everything each person says and does. As much as possible. Factoring in the context of the information being provided – the role of the individual, their incentive, their bias.
Each individual’s input should be seen as valuable. There should never be judgements based on stereotypes or assumptions.
This approach is something we all hope for many times through our lives. Over trivial incidents. And life changing events. Because it’s the only way to get closer to understanding. And fairness.
And those two things are vitally important. Especially in circumstances where individuals have suffered.
And are suffering.
And could suffer so much that the worst can happen.
If it hasn’t already.

 


The media have reported that the inquest found that “there are no strong links between the suicide of three Queensland teenagers and the controversial closure of a youth mental health facility,  … other factors played a more significant role in the suicides”. To try to consider the situation within the context provided by the people that experienced the closure process and aftermath … click on the button below.

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Understanding is the positive way forward

This isn’t a typical post for severeyouthmentalhealth.org – not even for one of our BLOG posts. But so many important topics overflowed from these recent statements in relation to youth mental health issues that we just had to comment. The real problem was knowing where to start! But here we go …

Yesterday, Andrew Bolt, an Australian media commentator, wrote a column in the Herald Sun newspaper the subject of which was Greta Thunberg, a Swedish activist whose personal protest on climate change inaction grew into a worldwide phenomenon that she continues to lead. *

Click to enlarge in new window

As you’ll see by the areas highlighted by us above, he chose to make the mental health issues that Greta deals with the thrust of his story. He chose to refer to her as “deeply disturbed“, “strange” and “fragile“. So not only did Andrew Bolt deny the science of climate change about which Greta has proven to be so well-informed but he showed himself to be as ignorant as too many sadly are in relation to complex youth mental health issues.

There are many ways to respond.

 

This is how Greta Thunberg did it:

 

Our inclination is to list some key facts in order to directly address those affected by severe and complex youth mental health issues who may have read Mr Bolt’s column:

1. We are not our health issues. Our identity comes from many things with some of it becoming evident in the ways we choose to express our values. But who we truly are is not delineated by our liver malfunction, by our malignant cells or by our mental health issues.

2. We cannot be defined by our chronological age. We can be shaped by our physical and cognitive development (which are result of our unique genetic make-up and experiences within the environment/s in which we have lived), by our interests and principles and abilities and … more. Our chronological age can be linked to a number of those things but the fact alone that we 16, 60 or 6 gives little indication of who a person is.

So – ‘The World’ will never see us as we truly and perfectly are – each human being is so many things making up a multi-faceted individual that even those close to us will never know us absolutely. 100%. And that’s OK. But we show aspects of ourselves through the words we choose to share (and who we choose share them with) and the actions that we take.

3. Our words and actions have implications for others. We can think only of ourselves and what suits our personal agenda or we can consider other people and how what we say and do will impact them.

4. The truth can hurt but there is no excuse for using misinformation to hurt.

5. We can choose to be negative or we can choose to be positive.

So – we can find ways to make things bad, we can criticise … we can create a persona that engenders fear from statements that aren’t true because, sadly, that can garner enough interest from a public so desperate to ensure they are prepared for the worst that advertisers will pay for your house and your boss’s mansion and his boss’s castle.
OR we can think about what we can do that could be useful, helpful, kind. To others and to ourselves. We can use positive words – encourage ourselves, compliment others, share inspiring/funny/exciting things, discuss solutions to a problem. We can take positive actions – do a chore that isn’t ours to do, make someone laugh, find a productive way to contribute to important issues or causes that matter to us, … and on a day we feel we can’t do anything at all, to just try and do one thing is something to be proud of.

Greta Thunberg is many things. 
Continuing to manage a number of health issues is not her identity but it shows that, with the right treatment and support, individuals can apply their specific skills and passions to learning and understanding, sharing knowledge, inspiring and energising others, trying to improve some part of living in the world.

So here’s our improvement on the headline for an article about what Greta Thunberg is doing:

To share this image on social media, right click (ctrl+click on Mac) to choose to Save As… , Copy etc.

 

You can be inspired.

But don’t forget that YOU CAN ALSO BE INSPIRING.

To try to achieve something positive when you have your own challenges is inspirational. It is brave. And strong. Whatever you are trying and whatever the outcome.

And to those who are yet to have a good understanding of the reality of severe and complex mental health issues, all of the above also applies.
It applies to us all.

(Especially me.)

 


Click to go to video

* If you want to find out more about Greta Thunberg’s work (beyond clicking on  the links in the 2nd para above), you can go to the following news reports:

Greta Thunberg: 5 Fast Facts You Need to Know

School Strike for Climate: Meet 15-Year-Old Activist Greta Thunberg, Who Inspired a Global Movement

16-Year-Old Climate Activist Greta Thunberg Nominated For Nobel Peace Prize

and/or view her Tedx Talk by clicking on the image (above right)

A good source of summary information as well as questions and discussion points to engage students and others with news on global events is the edition relating to Greta of The New York Times’ “Learning with …” series.


 

Other severeyouthmentalhealth.org BLOG POSTS can be found here
with NEWS POSTS on the homepage and
via the ‘Previous News’ menu on any page with a sidebar at the right

The Severe and Complex Youth Mental Health Cohort

A New Year has begun.
So what lies ahead for people affected by severe and complex youth mental health issues?
Of course we can’t know. We can hope.

BUT IS HOPE ENOUGH AFTER ALL THAT PEOPLE HAVE HAD TO ENDURE?

The people who genuinely understand what “severe and complex” is in adolescence remain a minority.
Those who know exactly are those who live it every day.

Beyond them, who else recognises that severe and complex youth mental health issues” defines a unique group of young people? That this is a group whose mental health issues are far from treatable depressive or anxiety disorders.

Young people with severe and complex mental health issues experience symptoms, behaviours and triggers that are unpredictable, tortuous, idiosyncratic and often extreme and life-threatening.
They are burdened by the challenges of balancing between child- and adulthood – all while they confront the implications of multiple conditions that interact with each other to produce effects that sometimes don’t relate to any one of their individual diagnoses.
They can be young people whose traumatic histories have left them socially isolated, traumatised, misunderstood and even ignored for significant portions of their lives.
This cohort of patients – as well as those who care for them – MUST HAVE proper recognition.
If this does not happen on a wide scale in 2019, then the devastation of the Barrett Closure will be part of an ongoing tragedy.

Yes, a new centre is being built which is an incredible relief.
And yes, there has been a real commitment to a collaborative design process that includes people with lived experience as well as healthcare professionals and experts in the architecture and construction of mental healthcare buildings. It’s hoped that this will mean the beginning of this kind of process for other healthcare service development.

But as we start the New Year with the deaths of Talieha Nebauer, Will Fowell and Caitlin Wilkinson Whiticker still under examination by the Queensland Coroner, we need to ask:

Will this be another year that ends with uncertainty?

Will there be the vital outcomes for the families who repeatedly warned that the closure of the Barrett Centre would put the most vulnerable young people at even higher risk?
Will there be public recognition of the false administrative deadline, political cost-cutting motivation and lack of appropriate replacement services that meant transitions from the closing centre could never encompass the fundamental principles of stability and continuity of care for young people whose illness bears the risk of fatal consequences?
Will there be the long overdue acknowledgment of the few professionals whose understanding and expertise allowed them to continue their dedication to the welfare of traumatised young people with skilled measures that prevented even greater permanent damage?

Will there be a move towards wide-reaching processes to educate healthcare professionals about this cohort and the fact that their needs differ from the majority of people requiring clinical support for mental health issues?

Without the clear and tangible acceptance (with whatever documentation/ endorsement is required*) across the healthcare sector – and beyond – that young people with severe and complex mental health issues require truly SPECIALISED support from skilled practitioners who have the KNOWLEDGE of and COMMITMENT to individualised care, the young people in this cohort will continue to be referred to treatment options that have little chance of achieving progress. …
They will find themselves repeatedly confronted by the futile expectation that treatment that has been effective for those whose illness is less complex and less severe might eventually achieve a modicum of progress.
They will stand in Emergency Departments and be told that their compulsion to harm themselves is ‘just attention-seeking’ behaviour.
They will be informed by more than one practitioner that they are too complex for his/her level of experience. And then be left with nowhere left to turn.
And they will retreat to somewhere where they feel they cannot fail again. But where they will become even more lost.

But this lack of progress is not THEIR failure …

These young people and their families and friends deserve better.
They always have.
They have always deserved the best. But have too often received the worst.

They are still often judged and dismissed.
Even though they compromise and keep trying to give clarity to what their lives are like and what they need.

They slip through the cracks of both healthcare and education.
Even though they are desperate for effective treatment and an opportunity to have lives that are even a shadow of the opportunities they see other young people immersed in.

The lives of young people with severe and complex mental health issue are hard enough.
It takes effort to face a world that terrifies.
It takes strength to sit in corridors waiting to give voice to your greatest fears and darkest moments.

No one WANTS to expose thoughts and feelings that are deep inside and quashed because an illness has created them but yet for which the sufferer feels personally responsible. Or like a Freak. Or Weird. Or Evil.
No one WANTS to stay in a psychiatric facility unless they know that it’s the only thing that can save them.
And no person wants to do those things again and again and again because their medication isn’t effective or because their complexity is beyond their current clinician’s experience.

But this is the life that those affected by severe and complex mental youth health issues have been living.
Because of illness.
Not karma. Not punishment. Not of their own doing in any way.

It is a health issue. That becomes an emotional issue. A social issue. It affects development and learning and relationships and futures.

It changes lives.

It takes lives.

AND ALL THESE YOUNG PEOPLE AND THEIR FAMILIES HAVE EVER NEEDED IS TO BE TRULY SEEN AND HEARD.
SO THE WORLD NEEDS TO LISTEN.
CLINICIANS NEED TO KNOW.
AND THEN APPLY THAT KNOWLEDGE.
The status quo is not good enough.
Not knowing is not good enough.

We know 3 young people died after the closure of the Barrett Centre.
We know other young people died before them and after them because their severity and complexity was not adequately recognised and supported.

So 2019 must be the year that Queensland,  Australia – and beyond –
SEES these young people and those that care for them.

RECOGNISES them.
LEARNS ABOUT THEM, FOR THEM AND WITH THEM.
AND DOES WHAT IS NEEDED TO GENUINELY HELP THEM.

.

If this year passes without those things happening,
we all should
know better.

.
Because we will have learnt absolutely nothing.

.

.


*  This need for clarification extends from those with lived experience to experts in the area of youth mental with extensive clinical and research backgrounds and a genuine understanding of the severe and complex cohort.
Orygen, the National Centre of Excellence in Youth Mental Health, is the world’s leading research and knowledge translation organisation focusing on mental ill-health in young people.  Professor Patrick McGorry is Orygen’s Executive Director. Their official response to the draft version of the National Mental Health Plan highlights a serious lack of clarification as regards severe and complex mental health issues i.e.

“… greater clarity (and consensus between the governments) needs to be articulated in the Fifth Plan to describe what is meant by ‘complex and severe’… “

and under “Specific feedback on the priority areas“, it’s stressed that there is:

“Over simplification of the experiences and stages of mental ill-health in the division of ‘complex and severe’ and the rest of the population. 

Unfortunately when the final version of the Plan was released, no changes had been made in that area. (Click image, right, to view draft and final text comparison.)

It’s also worth noting that in this 74 page document, the word “youth” appears only in reference to the Youth Suicide Prevention Plan for Tasmania (within a list of State and Territory Plans and Commitments). The word adolescent” appears a total of 4 times (two of those in one bibliography listing) and the phrases “young people” and “young adult/s” do not appear at all.

A Budget Boost – its implications for the Future … and the Past

A BLOG POST

The announcement of just under $70 million dollars to not only proceed with the establishment of the new extended treatment and rehabilitation facility at Chermside but to provide two new Step Up Step Down facilities and two new Day Programs to support young people with mental illness (online summary at the ABC website here) demonstrates the current government’s ongoing commitment to those who have been sadly overlooked in the past. Bi-partisan support for these positive moves would begin to ensure some long-needed stability and security for the futures of those in this most vulnerable of groups.

An adolescent extended treatment facility (AETF) fills a dangerous gap in service provision and Step Up Step Down and Day programs are vital in the full continuum of treatment and support options that are required to meet the needs of all young people with mental health issues. Extended inpatient treatment has proven essential for those young Queenslanders with severe and complex issues who have failed to make progress accessing community-based care and outpatient/intermediate care service options. The additional new programs will – if they are accessed in a timely way – provide some young people with the help needed to circumvent a stay in a residential facility. AND for those for whom extended inpatient care is essential, they will ensure that transition from one environment to another is gradual and fully supported according to the individual needs of the young person. Those affected by youth mental health issues across Queensland will be hoping that these kinds of service options will become readily available across the state. As community-based care remains the optimal environment – when the circumstances are right – then all communities must have access to every level of treatment and support.

The plans for the new facilities and programs have come from the process that commenced following the government’s commitment to act on all the recommendations from Justice Margaret Wilson’s report following the BAC Commission of Inquiry. Queensland Health then undertook to utilise a “co-design” process i.e. where bureaucrats, clinicians, specialist architects and other professionals work alongside consumers and carers to plan services that will be most effective. (Acknowledging that expertise lies not only in professional knowledge and practice but in lived experience is currently seen as innovative but should inevitably become standard procedure. Omitting those with practical, pertinent and comprehensive knowledge of the lived experience can only add an important dimension to planning for services in any area.)

Those young people (current and former) and family members who have taken part – and continue to be dedicated to – the process of genuine collaboration have demonstrated a level of commitment that is rare. People whose lives are affected by severe and complex mental health issues find themselves most often in situations where days and nights are to be survived moment by moment; plans are seldom made and often abandoned; and significant trauma, suffering, isolation and emergency management of the effects of illness must be regularly dealt with. And during recovery, the right approach for so many will be to look forward, to put strategies in place to navigate through daily challenges and to resist rumination on issues of anxiety and trauma. So participation in design of future services may be something that could be extremely problematic for the stability of some people’s mental health. There is great understanding throughout the mental health community for all who have suffered to make the right choices that will best support healing and not put mental health at risk and equally, there is deep gratitude for those able to put time and effort into a co-design process, sometimes at personal emotional risk.

And then there are those for whom looking forward provides a view with a void that can’t be filled – the families and communities who have lost loved ones will be experiencing mixed emotions at this announcement. The families of Talieha Nebauer, Will Fowell and Caitlin Wilkinson Whiticker will no doubt be relieved that there continue to be moves to ensure others might not have to suffer the personal tragedies that still shape their lives. Justine Wilkinson, herself a key participant in the co-design process, has told the ABC in relation to the budget commitment (particularly in relation to the continuation of planning for the Chermside AETF):

That’s absolutely fabulous, but this change has to continue, this is just the beginning and it has to be just the beginning. … We need to keep feeding these changes and innovations down the system to pick up young people before they get to that point.

However, we must recognise this news can only be bittersweet for those whose young people did not have the benefit of a government with such a strong commitment to confront youth mental health issues and to listen to those affected to order to provide the needed services. So our thoughts must also be with those whose bereavement continues as we hear this news. We must assure them that we will never fail to remember those who will not have the opportunity to access planned new services and we will continue to support those families for whom an inquest may provide some answers but will inevitably be a traumatic process and will never ever restore what they have lost. Talieha, Will and Caitlin and those that will continue to feel their absence from their lives are always in our thoughts.

The complexity of severe adolescent mental health issues is reflected in the reactions of those with lived experience to this positive budgetary news. There is relief, hope and gratitude but there is also caution and uncertainty from those who have experienced innumerable disappointments and who know that politics can play an inappropriate role in what is necessary in service provision across our communities. And there is renewed reflection on the tragic losses that will continue to impact people’s lives, whatever the future holds.

Severity and complexity in relation to mental health issues is not confined to a small group of young people. It is pervasive. It is challenging. And so it has become a situation that a significant proportion of the population have to live with and an issue that every single one of us must acknowledge.

The support that has been provided to the former Barrett families throughout the community has demonstrated that the capacity to care is our greatest strength. It is the strongest choice that any human being can make and it is undoubtedly the most rewarding. So with, gratitude for all everyone has done to lead us to a day when $70 million is committed to the next generation of Queenslanders, it’s hoped that the future contains not just all the services required but the ongoing support of an impressively caring population.

A reminder of INADEQUATE TRANSITIONS

A BLOG POST

10 months ago, I posted on the BLOG page of severeyouthmentalhealth.org – where pieces that have personal perspective, analysis or opinions appear (other posts are News and aim to focus on facts and information about developments etc.). I had been compelled to write about the findings of the Barrett Commission of Inquiry in relation to the transitions of patients.

As independent reviewers undertake a look at the transitions from adolescent to adult mental health services, particularly in relation to those suffering severe and complex mental health issues, I would urge anyone who is unsure of what they can contribute to read that July 2016 post which reflects on how the Barrett families felt in relation to the findings of the BACCOI on transitions.

These families know what needed to be done and what was overlooked and I am confident that they are not the only Queenslanders with this kind of insight.

So now is the time to do whatever you can to share your knowledge and experiences – or encourage others to do so – so that the young people who need the best support, the most carefully planned and gradual transitions and our best efforts in all the services they require in order to finally see a light at the end of the tunnel have access to what will not just improve their lives but, in some cases, save them. NOW IS THE TIME TO SAY WHAT NEEDS TO BE SAID. Through processes that ensure confidentiality but that also will mean that the input given IS ON RECORD and MUST BE TAKEN INTO CONSIDERATION.

If you have an opinion following experience in this area or know someone who has, since the HOI reviewers’ survey is no longer accepting entries, please do the following yourself or encourage those who have important insights to:

The next few weeks provide key opportunities for those who understand what’s needed to contribute to providing those very things.

On behalf of all Queenslanders who are affected by severe and complex youth mental health issues – now and in the generations to come – I implore you all to give your expert input. From those who have seen the reality to those who can shape the future – the vital passage of ideas is the only way we can get closer to the right support for those who need it the most.

*

MENTAL HEALTH WEEK – Time for ACTION

A BLOG POST

It’s Mental Health Week. And in the past, that has meant a lot of awareness-raising, stigma-quashing and acknowledgement of an issue that has for too long been treated like a shameful secret. And that’s all good, useful stuff. But the time has long since passed for more than knowing nods and pleasant words from those with the capacity to DO instead of DISCUSS.

Mental illness needs ACTION. NOW.

Health service providers, governments, mental health commissions/ advocates/ peak bodies and communities must move from rhetoric to establishing equitable service provision immediately. Otherwise how can anyone believe that mental health issues are, in fact, the cruel scourge afflicting millions unfairly as the annual PR tells us? We know they exist. And, thankfully, we now have knowledge of a range of pharmaceutical adjustments, treatment methods and support programs that mean these issues can be addressed. People CAN heal and progress and discover lives without the agony they once believed was infinite. BUT until the money, time and effort allocated to mental health is in line with those physical health issues that have the same level of impact, people affected by mental illness can’t feel as far from personally responsible for their health concerns as those with a blood disease or multiple sclerosis can. Continue reading

AN INQUEST … families still waiting

A BLOG POST

Talieha Nebauer passed away in April 2014
Will Fowell died in June 2014 and
Caitlin Wilkinson Whiticker took her life in August 2014

Two of those young people were in the care of the state when they took the actions that would end their lives. The other was living with family who had no access to any information on that young person’s treatment plan or assigned clinicians; state of mind and attendance at sessions; or the appropriate behaviour and support to be adopted by those close to her.

Prior to the closure of the Barrett Centre, families had the security of knowing that their loved ones were so well supervised that they would be safe from the fatal outcomes that their mental health issues could lead them towards. They knew that they were in an environment where they were surrounded by friends who’d look after them, who’d demonstrated the kind of caring that would at least help to nullify the feelings of isolation that had previously plagued them. And, for many, there was the hope that long-awaited progress brings – that one day, they would be leading independent lives in the community with all that things that that entails – study, work, social activities, sport, relationships, a family of their own …

but that ended as the turbulent years of uncertainty and decline led to the disintegration of that understanding community. Young people found themselves in unfamiliar places, sometimes surrounded by adult patients and expected to bear the burden of levels of self-sufficiency that they had no experience with; or living in the community and wielding the rights and authority of adulthood without the maturity or capacity to have such a huge responsibility.

April, June, August 2014.

And still no answers for their families. 

Continue reading

“Adequate” transitions?

A BLOG POST

The families of the young people transitioned from the Barrett Centre to facilitate its closure are understandably disturbed by the finding of the Commission of Inquiry that “Overall, the Commission has determined that the transition arrangements for the 17 transition clients were adequate.” That is one sentence in a report of which the first volume alone is 665 pages. But it means a lot when you have lived with the regression, deterioration, and most tragically, the death of the young person you love following that transition. However, the hundreds of pages of definitions, constraints and considerations that surround that sentence show that it might not be exactly what it appears to be when extracted and interpreted in isolation. Continue reading

2016 Mental Health Policy: M.I.A

A BLOG POST

When Professor Pat McGorry (Executive Director, Orygen, The National Centre of Excellence in Youth Mental Health and former Australian of the Year) addressed the National Press Club in the lead-up to the election with a presentation asserting that our governments have been Missing in Action, we would have expected that our politicians would respond immediately. Continue reading