Progress Report – June 2017

A summary on the progress of the implementation of the recommendations to improve mental health services for those affected by severe and complex adolescent mental health issues in Queensland is now on the DEVELOPMENTS page at severeyouthmentalhealth.org. This includes links to more detail via the Queensland Health Communiqués released following each Steering Committee meeting as well as  other recently tabled reports.

A couple of documents that are likely to be of particular interest are those relating to RECOMMENDATION #4 – THE DEVELOPMENT OF A NEW ADOLESCENT EXTENDED TREATMENT FACILITY (AETF). The Thematic Analysis Report summarises the web feedback provided on the draft Model of Service for the AETF so whether or not you were in a position to complete the online survey, the feedback from that makes for interesting reading. In addition, there is an External Review of the Model of Service by Dr Paul Robertson, a Victorian based child and adolescent psychiatrist of 25 years experience, who undertook consultations with a number of groups and individuals as well as being given access to relevant documentation. His insights will undoubtedly also play in a role in the development of not only the new facility but will encourage a strong focus on the full continuum of care for young people with mental health issues in Queensland (the child and youth mental health services continuum ie. CYMHSC, as Dr Robertson refers to it) and the ongoing co-design process i.e. “A structure to support ongoing consumer and carer participation in the broader CYMHSC system is recommended“.

So a complete and integrated CYMHSC system that will allow access across the state for all young people with mental health issues to a full range of treatment and other service options will be a key issue in the future. This will not only ensure stable and informed transitions from one care/education/support service to another but will hopefully mean that some young people who might otherwise have needed extended inpatient care could achieve recovery without that. For, although the clinical experts who gave evidence at the Barrett Inquiry made clear that there will always be a group of young people whose conditions and individual circumstances are so severe and complex that community-based care will not adequately support their progress, the objective is always to facilitate recovery in the least restrictive environment possible. Queensland needs a statewide service like the AETF but it also needs a complete system within which collaboration and communication are the foundation of operations. Mental health issues impact all aspects of people’s lives and when the individual needs and situations of those suffering are acknowledged, understood and met as effectively and immediately as possible, all our communities will benefit. So Dr Robertson’s urging that collaborative planning does not begin and end with a new facility is extremely pertinent.

He also stresses the need for RESEARCH to be a key component of the new AETF i.e.

Reference is made to the AETF undertaking research. It should be obliged to collect sufficient data to allow appropriate review of its functioning. Adequate resources, funding and time should be allocated for this to occur. Research will not occur without appropriate funding and partnerships with universities or other research organisations. Both appropriate data collection and analysis and research would require an active and resourced plan.

Existing and developing technologies should ensure that research extends beyond the new facility and across all the components of the CYMHSC. Collecting data on the services that precede and follow a young AETF patient’s inpatient treatment – will provide insights into this cohort of young people that is currently lacking across the globe. AND compiling extensive evidence on all youth mental health issues must be seen as a priority in a country where available data states that one in four young Australians currently has a mental health condition [ABS National Survey of Mental Health and Wellbeing: Summary of Results 2007 (2008), p 9] and we are regularly made aware that the risk in our youth population only continues to grow. So methods of gathering and collating information on the challenges faced by our young people that not only avoid any negative impact on the vulnerable but may, in fact, have potential for therapeutic benefit require prioritised consideration.

The STATEWIDE FORUMS facilitated by the Health and Education Departments along with Health Consumers Queensland have now concluded and summary information from those should soon become available. Consumers and carer representatives attended these with the support of HCQ and, with a number of factors influencing the ability of local consumers and carers to attend, it has also been invaluable to have Leonie Sanderson, the dedicated HCQ Engagement Advisor, continually open to accepting input via a range of communication avenues (surveys, emails, teleconferences and meetings for specific subgroups) to ensure that anyone in Queensland with insights into service provision in this area have had – and will continue to have – their voices heard.

THE ROLE OF HEALTH CONSUMERS QUEENSLAND has been extremely important in the process so far – supporting and facilitating the active involvement of consumers and carers. And HCQ’s enthusiasm for the project was highlighted when they made it the theme of the Plenary Session at their annual forum (video and written info on that session is available here), with Katherine Moodie and Jeannine Kimber – two of the consumer/carer representatives on the Steering Committee – on the panel alongside John Allan, Executive Director, MHAODB, Queensland Health; Gunther De Graeve, the Managing Director of the consulting firm undertaking the design of the new AETF; and Stacie Hansel, Executive Director, Dept Education & Training. The discussion highlighted the great potential of this project to not only produce innovative and more effective outcomes but to influence the way that future service planning should proceed. Participants significantly endorsed the tangible value of consumer/carer input as Gunther De Graeve stated:

There has been an enormous change in our design development, actually, through this process. … This co-design process really allowed us to reach very deep into the operational requirements, into the therapeutic requirements, the day-to-day requirements and then safety overlays etc. of this facility and it gave us a very wide platform. Traditionally, this engagement goes to clinicians and nursing staff and therapeutic staff and very little with the consumers. … It was a genuine process of actually trying to understand what the needs were and, to date, I still say that if we didn’t do that process we would have designed a very different facility and it probably wouldn’t have been – definitely not – as therapeutic as that facility could be for the patients.

So, as progress goes, it would seem that in many ways we are at the beginning of something bigger than a response to the Inquiry recommendations. Although the planning for the new AETF is well underway and the examination of transition procedures, service agreements and other vital elements that underlay the provision of services has been undertaken, the potential of this project to have an effect on other aspects of service delivery (education, vocational training, support for carers and families, justice and legal issues, housing and accommodation etc.), of approaches and attitudes to mental health and to ALL those affected by these issues must make this project only the start. People with lived experience must have a permanent seat at the table – not just on listening tours and wider consultation but at levels of decision-making and influence. And that includes not only consumers of services and their carers and families but those professionals who have dedicated years of clinical, educational and other practice to these consumers and carers. Those who work daily to improve the lives of others by being part of the reality, by knowing the individuals and supporting them in their journey must always be encouraged to give insights on the practicalities, the impediments, the successes.

Only through true collaboration will success be achieved. And if there is any area in which we must achieve, it is in keeping our young people alive and giving them hope for a better life.

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.

*

UPDATE: Mackay event added to Youth Mental Health Forums

NEWS

The Queensland Health Commission of Inquiry Implementation Group and Health Consumers Queensland will be hold a forum in Mackay as well as the other regional centres already announced. The list of dates is now as follows:

2 May (Tuesday)Toowoomba
4 May (Thursday)Sunshine Coast
5 May (Friday)Cairns
9 May (Tuesday) – Ipswich
12 May (Friday)Rockhampton
19 May (Friday)Townsville
23 May (Tuesday)Mt Isa
25 May (Thursday)Bundaberg
29 May (Monday)Logan
30 May (Tuesday)Mackay NEW
1 June (Thursday) Gold Coast
2 June (Friday)Brisbane

Click on your chosen location above to register your attendance OR

Head to the GET INVOLVED! page at severeyouthmentalhealth.org
under the heading getinvolvedtopic4
for more information

OR

Go directly to www.health.qld.gov.au/improvement/youthmentalhealth OR www.hcq.org.au OR
contact EDyouthmentalhealth@health.qld.gov.au 

This is a unique opportunity to genuinely contribute to the specific services and support required for all young people and families in Queensland dealing with severe and complex mental health issues.
We cannot change the past – and we will continue to support those whose suffering continues as a result of what has gone before – but anyone with an interest in this vital area of service provision can now be HEARD and RESPONDED TO.
Please become a part of the movement towards valuing our young people and those who care for them in the way that they truly deserve.