Thread by @CroakeyNews

Am set to live tweet till 4pm from an online #MHLivedExperience forum, hosted by
@MentalHealthVic @vichealthassoc with input from @VMIAC @tandemcarers & many others. Great if you can tune in. We'll publish a story later in the week.

Dr Stephanie Allen @Deloitte opening, talking about the emphasis we put on experience. Lived experience doesn't happen by stealth, when talk re incorporating in design/infrastructure of mental health, have to be very deliberate in way we do it #MHLivedExperience

Jacqui Gibson offers Acknowledgement of Country. Victorian Traditiona Owners maintain sovereignty, they have never ceded it and long called for a Treaty. Through strength of resilience and pride, their cultures and communities continue to thrive today. #MHLivedExperience

Great to see such a diverse representation of the mental health sector and to have so many with lived experience, says @tom_symondson. Impact of COVID19 only beginning to emerge, on top of issues that were already acute. #MHLivedExperience

Now hearing from @VMIAC's Dr Tricia Szirom - not representing but presenting the voice of lived experience, she says.

We're not saying anything new. Been saying for a long time. Unfortunately they are then ignored.

She says the Premier @DanielAndrewsMP conceded again last weekend that the mental health sector in Victoria is a mess. "That's dangerous for us". @VMIAC decided last year to think about: what would it look like if it worked brilliantly.

croakey.org/mental-health-…

First up is a video from @VMIAC - following conversations with 150 consumers - envisioning a future "where mental health services are truly listening to the needs and interests of people with mental health challenges"

The video heralds a new world of mental health care where “perhaps the most important change is that there is a choice in the options that people have for their therapies and support. They're in control of what happens to them.” #MHLivedExperience

A major principle that exists is that one size doesn't fit all. This means that each person is seen as unique and the best guide to their own experience. #MHLivedExperience

And this is true regardless of what we call ourselves. Whether it is people with lived experience of emotional distress, trauma, mental health challenges, or neurodiversity. #MHLIvedExperience

If you have ever been in an acute hospital you'll be delighted to hear that acute beds are now in the range of settings. Most are in the community and are committed to healing through strengths based solutions, focused therapies and support. #MHLivedExperience

Gender safety and the safety and inclusivity of LGBTQI+ and CALD consumers are priorities in every setting. There's a new understanding we all have different needs due to biological and cultural factors. We all know that safety is fundamental to any treatment being successful.

Therapy and support is now offered in the home and community organizations, peer led agencies and in respite centres. And there is a great balance between medication and meditation, as well as yoga instructors and psychiatrists. #MHLivedExperience

The predominant group of workers are peer workers and therapists who have a holistic approach to therapy ... including art therapy, music therapy, pet therapy,narrative and group therapy, which are all funded through Medicare. #MHLivedExperience

All of these services are easily accessible with simple ways of moving from one service to another, especially when we are in crisis.

And the settings have changed. Nature has been recognized as an integral component of healing. #MHLivedExperience

Codesign, co-production and collaboration are the foundation of the treatment service system, and all decisions about service design involve people with lived experience of mental distress.

#MHLivedExperience

An exciting collaborative centre has brought together consumers, carers, researchers, clinical services to research the best trauma- informed models of intervention and treatment, focusing on what we see as the issues and the best ways of addressing them. #MHLivedExperience

One of the many projects happening in the centre is the impact of the SDOH that create and exacerbate some of our mental illnesses, such as lack of housing, employment, addiction and family violence. #MHLivedExperience

As a result there is a shifting community understanding that what is happening to us is important and as a result we are treated with compassion, love and equity.

Ends a moving video vision from @vmiac #MHLivedExperience

Now Marie Piu from @tandemcarers is presenting at #MHLivedExperience

Hearing now at #MHLivedExperience from a carer who says mental health professionals knock off and go home, family and friends do not.

"My practice enormously influenced by my personal experience." He says it is not well understood the isolation that can happen.

Carer talks about getting support: 'two 6' guys, hugging and holding back tears'.

At worst people with mental health are blamed, at best misunderstood.

"Mental illness is the only illness today where it remains acceptable to blame the sufferer." #MHLivedExperience

"We're not an add-on, not an optional extra, we need to be active and included team members. We are absolutely essential to moving forward." #MHLivedExperience

We're being introduced now at #MHLivedExperience to facilitators of breakout room discussions - including @Dpeters1977!

These are the topics for #MHLivedExperience breakouts

I'm in the Evidence-Informed & Outcomes-Focused breakout room at #MHLivedExperience.

We're looking at how ensure co-design/co-production will have voice of lived experience as central to organisational & system monitoring, evaluation, & evidence.

Here are some early thoughts at our breakout at #MHLivedExperience

#MHLivedExperience

#MHLivedExperience

#MHLivedExperience

Hearing that pressures on carers and consumers in rural Victoria so much greater because of lack of access to services, as well as all the compromised SDOH issues, like employment, travel etc.

#MHLivedExperience

What drives research?

"What gets funded, bluntly. Are a lot of researchers who do things unfunded because of passion but..."

"Not everyone (consumers) knows how to get the research funding."

"So much expertise in this room...I want to give back."

#MHLivedExperience

Do research funding bodies need to ensure an equal representation of lived experience?

Some do.

There is a hierarchy of "what seems to be of value".

"Plenty of $, depends where it goes (to 'gold standards')"

#MHLivedExperience

#MHLivedExperience

#MHLivedExperience

#MHLivedExperience

"We're always moving into their structures, then it becomes about 'supporting us'.

We need to flip that. How different is it when there is a consumer working at a high level in an org vs on a consumer consultation committee."

#MHLivedExperience

#MHLivedExperience

Shout out in the room to the embedded work of consumer academic @croper2104

"Consistency and embedding of it is critical." Others reporting the pushback they get when that's not there.

Talking re the need for more research training opportunities for people with lived experience but also issues around whether people in research want to speak of their lived experience. #MHLivedExperience

We're back in the main room now at #MHLivedExperience - @ingioz facilitating - main breakaway themes

Leadership/capability group: Ambassadorship program for young people (paid, external to orgs); the right workplace culture, if have structures, make them ongoing & well funded.

#MHLivedExperience

Need to be Lived Experience training to management level (managers often don't u'stand lived experience, power imbalances, impact). Often people with lived experience reporting to people without. Need safe working environments where people can disclose.

Better pathways to work/careers needed for people with lived experience.

Lived experience needs to be embedded in multidisciplinary teams, not just consultative.

Critical importance of cultural change in orgs, need for workforce strategy to enable.

#MHLivedExperience

Further on Workforce Readiness.

Lived experience should be a discipline that is recognised, with pathways.

Need something like the 'rainbow tick' for lived experience.

Pay parity.

#MHLivedExperience

Again, unsurprisingly, career progression and having people with lived experience managed by people with lived experience came up in this breakout.

Orgs not working as collaboratively as should, "reinventing the wheel", means standards can vary, need accountability for that.

Need to grow the consumer/carer workforce - not help to have roles that are temporary, project-based. Often great work that doesn't continue.

Management who are champions/allies very appreciated.

#MHLivedExperience

Need to have funding bodies value the voice of lived experience

The opportunity to publish & be credited properly

What do we consider good evidence, what is success? Is it about the service being delivered (funders) versus the relationships built with people receiving them.

Who decides what we research? What counts as evidence? (There is a hierarchy).

These are the barriers in academic research that screens out the voice of lived experience to a degree.

#MHLivedExperience

How do you incorporate a lived experience voice to answer those questions?

Where is the pathway for lived experience on funding bodies for research, to be on review panels, ethics committees, uni research positions?

#MHLivedExperience, what's needed for better Partnerships?

Attitude change at all levels, redistribution of power dynamics, people being willing to share their power base.

Lack of knowledge or commitment to co-design

Need workforce expanded - one representative can't do it all

Develop/identify allies and promote what works

#MHLivedExperience

Panel discussion now: Ramesh Kumar, Jacqui Gibson, Maggie Toko, @MelPetrakis

Maggie talks about being told once not even to aspire with career. She has held many senior positions. Lived experience is empowerment. "We need to own our own power".

Highly recommend going into any job saying 'I can do that', not 'Can I do that?"

Maggie Toko: #MHLivedExperience

Proud Aboriginal woman Jacqui Gibson:

My uncle would describe lived experience as how our spirit guides have risen high, so v high, sometimes get lost. It is the story of when they come back that make me & my mob strong. Cultural safety: mental health a "very white construct".

People with lived experience need welcoming/inclusive environments, where they & family are safe.

That means not 'retraumatise' through having to re-tell story, to 'sell the case the get good help.

Should not face over-scrutiny at work, eg when sick.

#MHLivedExperience

We need to learn from the visions presented here by @VMIAC & @tandemcarers - choice, control, one size does not fit all, safety, inclusivity, says @MentalHealthVic CEO Angus Clelland, wrapping up #MHLivedExperience

Co-design, co-production, collaboration - these are not add-ons or optional extras.

"Our job going forward is to ensure lived experience is at the centre of the @RCMentalHealth reform process, including how our own orgs prepare for the change ahead."

Angus Clelland.

And that's a wrap from #MHLivedExperience - fantastic discussion.

Here's a Twitter thread unrolled threadreaderapp.com/thread/1287960…

cc @MartinFoleyMP @MentalHealthVic @Dpeters1977 @tandemcarers @VMIAC