Stage II of development of improved services begins

With the first stage of the implementation of the Barrett Inquiry recommendations predominantly completed (as Rec #1 requires a review across Queensland Health and not just in relation to youth mental health, the acceptance of the related report is still pending) it’s worth looking back on how things progressed in relation to consumer/carer involvement, thanks to the Health Consumers Queensland video put together by Leonie Sanderson. Another very interesting video on how things have progressed is that of the first Plenary Session at HCQ’s Annual Forum where the initial stage of the co-design process for youth mental health services is the focus.

There seems to be unanimous agreement on the success so far of the involvement of those with lived experience – particularly in relation to the value placed on and respect given to consumer/carer participants. So the natural progression has been that the new committees and working groups currently being put together to work on the next stage of service development will again include a number of consumer and carer representatives.  Following the call for Expressions of Interest from people interested in taking on roles in the upcoming process, the resulting group of individuals selected has created a useful mix of those who were involved with the initial stage and new contributors. This bodes well for input that will represent a range of perspectives as well as the positive outcomes that can come from the productive combination of fresh ideas and experience.

Orientation Meeting

In order to acquaint all the successful consumer/carer reps for the next stage with
(a) the upcoming process
(b) each other and
(c) the relevant government staff members (from the Education Department and Capital Works as well as, of course, from Queensland Health)
an Orientation Meeting was held on the 6th of October.

As well as covering the necessary administrative issues, participants were able to connect with each other and with Leonie Sanderson and Melissa Fox of Health Consumers Queensland (HCQ) – who will again be facilitating the consumer/carer engagement. There was also a preliminary presentation on the overview of the program of work to be undertaken and the consumer/carer roles within that.

It’s hoped that there will be opportunities for others to participate in various ways as things progress so, if you’re interested, you can check in regularly at the dedicated HCQ page OR head there now and sign up to receive email updates on developments. Note: You can sign up for updates purely related to the post-Barrett Inquiry action AND/OR for any other consumers/carer opportunities to engage in other kinds of service planning and support across the Health sector. If you do the latter, you hear about opportunities like the following:

1.) Consumer/Carer Registrations for 1st Asia Pacific Conference on Integrated Care

HCQ has been given a number of registrations for consumers/carers to attend the three day conference at the Brisbane Convention Centre from 8 – 10 November. (Please note that these registrations cover only the cost of attendance and nothing additional in relation to travel, accommodation etc.)

The Congress is a partnership between The International Foundation of Integrated Care (IFIC), The Children’s Health Queensland Hospital and Health Service, Queensland Health Clinical Excellence Division, the University of Queensland and the Centre for Remote and Rural Mental Health. You can view the draft program here or click on the link here or in the title above to find out more about applying for the HCQ registrations.

2.) 5th Annual North Brisbane Partners in Recovery Forum

Registrations are still available to attend this forum which will be held on Thursday 2 November 2017 at Victoria Park, Herston. Because it includes keynote speakers with a focus on connecting mental and physical health and wellbeing , it seems appropriate to include it in this update.

North Brisbane Partners in Recovery‘ suggests that the following people attend:

  • frontline mental health workers and other community workers with an interest in mental health
  • health and community service managers, researchers and policy makers
  • consumer and carer representatives, volunteers, peer workers and management committee members.

To book, you can head to this event booking page or to find out more, contact danielle.francisco@brisbanenorthphn.org.au or 07 3630 7344.

And, as always, severeyouthmentalhealth.org will endeavour to keep site visitors and followers updated on any developments and issues relating mental health services for young people with severe and complex issues, particularly in Queensland.

Thanks to all our regular and new supporters. The more that people with compassion and personal understanding can engage in the development of services, the better the future will be for the young people and their families who need and deserve the best possible support.
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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.

WANTED: Young People with Opinions and Experience!

NEWS

Following  the news posted recently about the engagement of two independent organisations to review the alignment and transition arrangements between adolescent and adult mental health services in Queensland, Health Consumers Queensland is hosting a forum run by Health Outcomes International to ensure the most important voices are heard on this issue i.e.

 the views of older adolescents and young people who have lived experience of mental health issues and have had contact with mental health services. 

Young people from 18 to 27 years are encouraged to attend, dial in to videoconference or submit their input to the issues being discussed via email. Through whatever means young people with experience in this area are able to communicate their opinions, it’s important that they are heard. It’s only through knowing what’s been happening that isn’t working that those approaches can be changed and we can put all our efforts into ensuring that the support, processes and services that will actually help are made available. SO … the independent reviewers are doing best to make sure that young people can gather together in a neutral environment – without service providers or government representatives – to air their concerns. This will take place at

Health Consumers Queensland Level 9, 217 George Street BRISBANE QLD 4000

on Thursday 1 June 2017, 1.30 pm – 3.00pm (approximately 1.5 hours)

RSVP: V􀁳anessaH􀀬@hoi.com.au

(If you need to bring a support person, please indicate that in your RSVP and be aware that this forum is to allow free-flowing discussion between young people so all attendees should help to foster that environment.)

FULL DETAILS of the youth forum are on the flyer that can be viewed/downloaded here.

The independent reviewers understand, though, that not everyone will have the capacity to attend. But that doesn’t mean those young people can’t have their say.

 For more information about linking in by videoconference, or to request an interpreter please contact Samantha Battams: 08 83633699 or samantha@hoi.com.au

Young people can also use the Word document available here to download or copy/paste into an email to give feedback on any of the issues to be discussed. They can then send these to either Samantha Battams or to Leonie Sanderson (Health Consumers Queensland) with the assurance that their comments will be included without any identifying information included. Privacy and confidentiality are recognised as vital in this process so HOI have guaranteed that …

 The session will be confidential in that no-one will be individually identified in the review.

 Please share this post with anyone you know who may have valuable experience in this area. The only chance we have to repair/replace the areas of the system that are failing  is if the true experts – those who’ve lived through direct experience of transition from adolescent to adult services – provide their insights. The benefits to other young people in the future will be immeasurable.

AND PLEASE DON’T FORGET … ANYONE with insights into the transition from adolescent to adult services for people with mental health issues in queensland can complete the independently run online surveY HERE.

The more you say, the more things can change.

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.

What does ‘SEVERE & COMPLEX’ ADOLESCENT mental health issues MEAN?

NEWS

Very few people know.

Quite a few people think they know … but they don’t.

So, as is often the case, education is the answer.

If there is genuine understanding of an issue, most people’s needs will be met. So, in endeavouring to ensure that the needs of those affected by severe and complex adolescent mental health issues are met, those advocating for the right services are gathering information from the people who know – the people who’ve experienced those issues.

If this is you or someone you know, we need your input … so that we can make sure YOU and those close to you … AND others like you … get the best help in future.

We need to put together stories, snapshots, insights into what it’s like living with severe and complex mental health issues during adolescence – for the young people, for their carers, for their families and their friends. 

So if you can tell us just a little, we can put together some examples that resonate with truth but without identifying any individual or contravening anyone’s privacy. We can paint a clear picture of what it feels like to:

  • be turned away from an Emergency Department
  • be denied access to services because you’re TOO unwell
  • have to retell your history over and over again to psychiatrists, psychologists, CYMHS staff
  • etc.

AND what it feels like to:

  • get the right support so that you can attend school
  • work with a clinician who respects your input and acknowledges your strengths
  • build a life with functional relationships and moments of peace
  • etc.

Only your own stories can describe what it’s like. And we know that it’s not easy to tell those stories. So Health Consumers Qld have put together some questions to provide a framework for people to provide their insights. So that we can educate people – the people in positions that will determine the services available to support those dealing with severe and complex adolescent mental health issues.

Click on the links below to have your say – the good, the bad, the unimaginable. If the government officials, medical professionals and bureaucrats don’t know what’s happening to you, they can’t improve the system, the type/amount of support or the approach/attitude of clinical staff etc.

The good things must be replicated and shared.
The bad things must be prevented from impacting people’s lives ever again.

So please fill us in about your significant experiences and knowledge of what works/doesn’t work (AND/OR encourage others to do so) via:

Snapshot for consumers/young people

and

Snapshot for family/carers

and you can provide a brief history with this story template.

Then we’ll be able to educate people about what you’re dealing with (while you remain anonymous). And we can push even harder for better services so that, in the future, you’ll have only good stories to tell.

Progress in Youth Mental Health Planning

NEWS

Queensland Health now have a website that deals specifically with their actions in relation to the Barrett Adolescent Centre Closure Commission of Inquiry. This will provide information on plans for the new extended treatment and education facility as well as other related developments and, along with this site and the dedicated page at Health Consumers Queensland, it’ll inform people of ways they can become involved in plans for future services and policies. Regular Communiqués will be posted on this page along with any other news and relevant information. Continue reading

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.

.

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

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