While all other pages and posts on this website aim to be a factual, accurate information on issues related to severe and complex youth mental health, this Blog page and the posts attached to it are opinions or comments from the editors of this site or invited guest contributors. Wherever possible, the name and/or the related interests/connections of the party posting will be provided. (Should a guest contributor wish to remain anonymous, a descriptor of their relationship to the issue will be provided.)
A BUDGET BOOST – ITS IMPLICATIONS FOR THE FUTURE … AND THE PAST
JUNE 13, 2017 by editorsevereyouthmentalhealth
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 will contribute to both providing some young people with the help needed – if they are accessed in a timely way – to circumvent a stay in a residential facility AND for those for whom extended inpatient care is essential, they will ensure that transition from that environment 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 as 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 is a situation that a significant proportion of the population have to live with and 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
MAY 29, 2017 by editorsevereyouthmentalhealth
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 on 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, please do the following yourself or encourage those who have important insights to:
- COMPLETE THE SURVEY
- CONTRIBUTE TO THE YOUTH FORUM
- EMAIL THE INDEPENDENT REVIEWERS or YOUR HCQ ADVOCATE
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.
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.
Firstly, it should be noted that the finding of ‘adequate transitions’ clearly state that it is “overall”. So it’s very possible that within the specifics of decisions made and actions taken, that there were steps that weren’t adequate. Volume 2 of the report is, rightly, restricted but individual families should be able to discuss their particular situation with government representatives in the near future.
The report also states that “The Commission finds that the care, support and services provided to several transition clients were not ideal” and “that systemic problems affected the transition arrangements for and the care, support and services available to some of the transition clients.” So ‘overall … adequate’ is far from perfect. Or even ‘good’.
It’s important, too, to note that the report is based on information provided that falls within the parameters of the Commission’s Terms of Reference – anything outside those Terms was not considered. In addition, the report indicates that not all former patients provided evidence – for so many, to relive their trauma would have been too detrimental to their health and it’s totally understandable that they had to do what was right for their personal health and safety. (I think everyone is glad that they took the right steps to ensure stability in their health and fully supports them in doing so.)
We should also probably consider that the Commission of Inquiry wasn’t looking at the full picture that families can see. They can’t see a young person now isolating themselves when in visits home during their time at Barrett they had begun to socially engage. The Commission didn’t hear anything of the personal circumstances of young people’s day-to-day existence as weeks passed and fresh challenges were presented in the adult services they were transitioned to. They learnt nothing of how it felt once all the logistical things were settled and a teenager was left to deal with a new environment, new people, new responsibilities … and then, if they managed to navigate the first few months, reacting to the suicides of three friends. Three people who were more like them than anyone else in this new world they’d been pushed into. Because the Commission of Inquiry had clear, legal parameters. It had time constraints and theoretical definitions that restricted its examinations. So what it views as “transition” and “adequate” only applies to a very specific time period and a very specific set of circumstances.
ADEQUATE IN THE CONTEXT OF A TIGHT TIMEFRAME AND THE LACK OF APPROPRIATE ALTERNATIVE SERVICES
After multiple submissions from the legal representatives of various parties, the Commission concluded that “‘adequate’ in this term of reference means ‘sufficient’ or ‘satisfactory’ in the circumstances of the impending closure.” So … bearing in mind that they were operating in an environment where an artificial deadline forced the transfer of patients from a closing facility that was the only one of its kind in the state TO services that did not match the need of the patient, the Commission has concluded that those responsible for the transitions did what was ‘sufficient’. Viewed in that light, it’s not a glowing assessment.
PARAMETERS – ONE MONTH POST-CLOSURE AND NO ASSESSMENT OF RECEIVING SERVICE ONCE TRANSITION WAS COMPLETE
The Commission also had to restrict its investigations to within a limited time period – with having only a certain number of weeks to complete its work, it couldn’t look at what happened with Barrett patients over months and years. So it had to define what was meant by “transition” in relation to the Inquiry. So –
“the Commission determined that generally a transition in association with the closure ended about a month after the transition client’s discharge from the BAC. This temporal limitation meant that the Commission’s factual inquiry started at the beginning of the transition and ended around one month after the transition client’s discharge from the BAC. The Commission’s terms of reference, and its factual inquiry, do not extend to a consideration of the following matters:
- the immediate cause or root causes of the deaths of the three young people who died in 2014 who had formerly been patients of the BAC
- whether those deaths were caused by or contributed to or affected by the closure of the BAC in early 2014
- whether those deaths were caused by or contributed to or affected by the transition arrangements or the adequacy of care provided by the various receiving services.
Those are matters for the Coroner.” (p 398)
So an ‘adequate transition’ was, we hope, never intended to describe the circumstances surrounding the tragic loss of three young people. Nor even the ongoing outcomes of the post-Barrett treatment and accommodation for any of the former patients.
“Under term of reference 3(d)(i), the Commission is required to make a factual inquiry as to the transition arrangements for each of the transition clients. This means examining how the care, how the support, how the service quality and how the safety risks were identified, assessed, planned for, managed and implemented for each of the transition clients before and after the closure. This inquiry focuses on the process underlying each transition client’s movement to alternative care. It includes consideration of the transition plan prepared for that transition client and how a receiving service was identified, both as the type of service and as having the capacity required for that transition client. It does not extend to the clinical outcomes, quality or efficacy of the treatment at the alternative care service once the transition process was complete.” (p343)
So, not vastly different from the “Report: Transitional Care for Adolescent Patients of the Barrett Adolescent Centre” under former Health Director-General Ian Maynard, this was an examination where much of the focus was on how those planning for the transition of patients went about their duties. And it took into account the environment they were doing so in i.e. one where “by November 2013, it was unanimously understood that none of the replacement services would be available when the BAC closed.” And where some questioned whether that full suite of services did, in fact, cater for those young people for whom Barrett had been a ‘last resort’.
A Commission of Inquiry is probably rarely able to achieve everything that those so seriously affected by the issue under investigation would want. There are costs and time constraints and legal considerations. But it’s hoped that the people – the human beings – whose lives have been irreparably damaged might come through the Inquiry experience with some kind of foundation on which to seek the outcomes they need. There will be a Coroner’s Inquest into the deaths of Talieha Nebauer, William Fowell and Caitlin Wilkinson-Whiticker.
The government has indicated a commitment to meet with families of former Barrett patients to discuss their personal circumstances and to collaborate on developing a new facility.
And, the silence that represented the ignorance of most of us to the plight of these families, these young people whose bravery and strength and loyalty is unmatched, which was replaced by a consistent murmur and than some determined calls for understanding and compassion and support has ultimately grown in some to a contained inner roar. That reminds us that will we do whatever we can to make the real voices heard. And to make the right people listen.
So it isn’t over. And it certainly isn’t adequate. And while we can move forward in many ways, we are always with those who won’t be able to forget the Barrett closure. So neither will we.
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. Not just to redress the gaping hole in campaigning that has been the discussion on mental ill-health, but to commit to rectify the horrendous disparity between mental healthcare and medical healthcare policies, funding and services.
Currently 7% of the federal health budget is assigned to mental health but mental illness makes up 13.6% of Australia’s total burden of disease.
How can an issue that affects everyone, weakens the economy … and is the best value for money across the whole of the healthcare system – that’s what the World Economic Forum tells us (OECD), one where Australian science and innovation has brought dramatic progress within reach and one that’s been at the absolute forefront of public discourse and election commitments at every single election over the last decade – how could it have disappeared from view?
Professor Patrick McGorry
Mental health issues create one of the major drains on the Australian population. There are 12,000 deaths a year in this country attributable to mental illness and countless lives in states from impairment to purgatory due to issues that are treatable – to the point of substantial recovery or lifetime management.
But, until yesterday’s Labor campaign launch, there has been only silence. And Bill Shorten’s announcement that Labor would fund suicide prevention projects and keep Headspace centres open is nowhere near enough when any government should be doubling its investment in mental healthcare.
The need is glaring. The expertise exists. But our politicians can’t find the money, the compassion – or the votes – to commit to doing what can be done to save thousands of Australian lives.
It’s been 10 days since Professor McGorry’s call to action and our Prime Minister has found all sorts to talk about during that time. He has found money for baseball parks, roads and business startups. But nothing to address the chasm that is mental healthcare in Australia. And in the Opposition Leader’s raft of promises, mental health rates only a brief mention. Mr Turnbull visited a Headspace centre in his own electorate – but did he take the opportunity to announce a long overdue turnaround in government support for this area of such desperate need? No. In fact, yesterday the Daily Telegraph reported that: Life-saving youth mental health services are being quietly dismantled by the Turnbull Government, leaving thousands of teenagers at greater risk of suicide. Those very Headspace centres that our PM strolled through on his way to announce funding for upgrading the Puffing Billy tourist train are now at risk as PHNs take over funding responsibility and Headspace’s national office budget will fall from $19 million to $8 million per annum next year, and $5 million the following year under the coalition.
It’s not like there haven’t been periods of public discourse about mental illness in recent years – statements about overcoming the stigma (an important goal) are quite regular. But when a government says there should be a parity of understanding and yet declines to match those words with services, programs and funding, how can anyone expect mental illness to be seen as anything other than something to be swept under the carpet? Such a huge part of mental ill-health is shame, self-loathing and then social isolation. If any one of our politicians felt a fragment of what someone with a mental health condition feels – or had a family member enduring the torment of mental illness – they would do whatever needed to be done to combat this plague.
But they are worse than silent. They make gestures. And gestures are what people do to those they want to go away.
In his Press Club address, Professor McGorry urged us to demand more of our politicians as they attempt to win us over with electioneering i.e.
– EXPECT A REAL PLAN
– DON’T BE SHORT-CHANGED
– USE YOUR VOICE AND VOTE
All I would add would be to use your voice for more than just voting. …
Now is the time to SPEAK OUT
Then “use your voice” …
– with your friends and communities, in your workplaces and social activities. And when you do, remember that you’re doing what so many will mental health issues can’t do. You’re going where they can’t go. So make the most of what you have to bring an end to the isolation that others are experiencing.
– take to social media to demand all our politicians commit to expanding Headspace – including the Early Psychosis Programs, commit decisively to redressing the mental healthcare funding inequity with greater investment in programs that work so that more Australians can have access to treatment that can change their lives and those of their families.
If you don’t tell your candidates and the party leaders what you expect, how will they ever know? And if you don’t get the response you think the Australian people deserve, use your vote to reflect your dissatisfaction. Now is the time to use your voice and encourage all your friends, colleagues, Facebook and Twitter followers to do the same.
To take this stand is something to be proud of in an Australia where the politicians’ attitude to mental healthcare is a national disgrace. If we don’t stand up now, who knows what – or who – will be gone tomorrow.