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.

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$70 million in Queensland budget for Adolescent Mental Health

NEWS

The opening story on the 12 June bulletin on Queensland’s ABC television News was that the Palaszcsuk’s 13 June 2017 state budget – released this week – includes just under $70 million dollars to not only proceed with the establishment of the new extended treatment and rehabilitation facility at Chermside but to create four other complementary services aiming to support young people with mental illness in the community. (Online summary of ABC report here.)

Future plans include two new Step up Step Down facilities in south-east Queensland and two day programs to be based at Logan and the Gold Coast.

Justine Wilkinson, who lost her daughter Caitlin following the closure of the Barrett Adolescent Centre, has welcomed the allocation of funding but acknowledges that there is still much to be done to provide young people and their families with the full range of support that will make a significant difference to lives that can be indescribably turbulent and challenging. Ms Wilkinson’s ongoing advocacy has meant that she – along with other consumers and carers with lived experience in this area – has played a significant role in the ongoing co-design of new services following the government’s commitment to act on all the recommendations from the BAC Commission of Inquiry.

The engagement of Health Consumers Queensland has ensured that consumer and carer representatives sit on all committees and working groups undertaking planning to fulfil the recommendations and that people throughout Queensland have had opportunities to provide meaningful input into future service provision. This commitment to co-design ensures that those with lived experience not only are heard but heeded and can actively help to shape future services – a collaboration that should lead to programs and support that genuinely meet the needs of those in the community that require them.

Health Minister Cameron Dick believes the funding package to be a landmark step for young people so the community affected by youth mental health issues can only hope that innovative approaches to planning and needed funding continue to be at the forefront of the minds of all those responsible for providing vital services at all levels and in all sectors.

(More comment on this announcement can be found at the Blog post: ‘A Budget Boost –its implications for the Future and the Past.)

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.

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.

Preliminary Model of Service for New Facility

NEWS

After three workshops where people with lived experience collaborated with clinicians, education staff and government planners, Queensland Health have today released the preliminary Model of Service (MoS) for the new adolescent extended treatment facility in the grounds of Prince Charles Hospital with the following explanation:

The preliminary Model of Service has been released on the COI Implementation team website at http://www.health.qld.gov.au/improvement/youthmentalhealth/model-of-service/ and you are invited to provide comments to inform ongoing development. This opportunity is open until Friday 17 February, 2017.  If you are aware of other people (individuals or organisations) who may be interested in the model of service and contributing comments you are welcome to provide the link to them.

Health Consumers Queensland will continue to work closely with the Department to support the engagement and involvement of consumers and carers in implementation of the Government response to all recommendations. Consumers and carers are encouraged to contact the appointed Engagement Advisor Leonie Sanderson should they wish to contribute to a group response (http://www.hcq.org.au/our-work/barrett-inquiry/).

As well as being available on the government website, the document is also available here.

Note:  A Model of Service doesn’t aim to describe the day-to-day operations of such a facility. It is a high level document which guides the direction taken by a service – defining
WHO the service is for;
WHAT it hopes to ACHIEVE and
WHAT it intends to DO
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So anyone with an interest in mental healthcare can provide their input at this level to ensure that those who are currently not catered for in government healthcare service provision will finally have an option that will aid their recovery.

Everyone with any interest in Queensland’s health services, mental health issues and adolescent mental healthcare is urged to look through the Model and give feedback.

This can be done in several different ways:

1) By using the survey form that Queensland Health has made available here.

2) By providing a written response via email to the Commission of Inquiry Implementation Team – Preliminary Model of Service at EDyouthmentalhealth@health.qld.gov.au  or

3) By contacting Leonie Sanderson at Health Consumers Queensland to have input into a group response.

The only way to ensure  that the best possible service becomes available to Queenslanders in need of genuinely effective adolescent extended mental healthcare, education and rehabilitation is to have a say about what is needed NOW.

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Welcome to the website that, like savebarrett.org before it, aims to advocate on behalf of those dealing with severe and complex adolescent mental health issues in Queensland.

After the public rallied in support of the Barrett community over the closure of the Barrett Adolescent Centre at Wacol in 2013/14, it has become evident that this area of mental illness – and the services required to enable those affected to lead the best lives possible – remains largely misunderstood … even amongst the most highly trained mental health clinicians. So our objective is to achieve greater understanding – for all involved.

This issue is as severe and complex as the illnesses that it encapsulates. Most people who live and work in this area are simply trying to do their best to minimise suffering and maximise recovery. We join them in that sense of purpose and, in doing so, propose that it is through collaboration that the best outcomes will be obtained. When adolescents, families, friends, carers, clinicians, educators, allied health staff, government representatives, private service providers and the wider community come together with mutual respect, motivated to ensure the best support is available, young people have the best chance to heal.

This site is one small way to try and deepen the understanding that’s needed …

  • It will provide information on what has happened, what is needed, what is planned.
  • It will share links to other resources, entities and agencies.
  • It will suggest ways – big and small – that anyone can help those who benefit so much from just knowing that people really care.
  • It will try to bring people together – encourage acknowledgement of experience, sharing of information, appreciation of insights.

All so that a group of vulnerable people who have previously been (intentionally or unintentionally) overlooked will have access to the kind of help that will make a positive difference to their lives. If any of us can do anything to support those people, we will have done something truly valuable.

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This site is in honour of Talieha, Will and Caitlin … three shining lights who will never fade.

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