All content contained within should be restricted to those over-age. Occasionally, suicide and self-harm are mentioned and readers should take care to ensure they are in a safe place - emotionally and physically - before reading. Comments are welcome.

Monday, February 20, 2012

QLD Mental Health Consultation - What a fucking day!!!

I went to the Sunshine Coast 2nd round consultation in regards to the QLD Mental Health Advisory Committee the other day.  What a ride that became...

I sat down at the back, because with a two hour session, I knew I would have to get up and stretch, or I wouldn't be able to walk back to the car with my joints lol... They started off - three people from the government, a guy, a typing lady, and a carer representative.  Then the room started to fill, and I watched them all - they knew each other, and they had "work clothes" on... I was the only consumer in the room.  Great.

As the Government guy started talking, I tried really hard to just listen and tweet.  And I did tweet, and I did listen.  And a couple of times, my mouth got the better of me, and I mumbled some things under my breath.  From the giggles of the guy next to me, my sentiments were obviously shared though.

Government guy (you guys know I have a BAD memory yeah?) - he started showing some slides.  He got through the preliminary ones before getting on to the recommendation ones, and I'd like to be able to say that we actually saw the recommendation ones, and that we talked about the recommendations, but we didn't.  We got stuck on the preliminary ones.  Because the last preliminary one talked about the Mental Health Advisory Committee being "independent".  And the room full of QLD Health employees and NGO's and NFP's ... well, they just started bitching.  And didn't stop.  About funding.  And control.  And who would have funding and control.

A couple of times, I spoke up - sometimes to back up the government, and sometimes not.  One time to dispel the myth that drugs and alcohol gets a better rap (stigma) than mental health (so so so not true).  And then I got the shits.  Then I wanted to have my say, and I put my hand up, and I spoke.

The thing, and this is important to know - I wasn't nervous.  I was calm.  I knew what I wanted to say, almost word for word.  I had a plan.  My heart was steady, and my hands were calm.  I was confident.  I was in control.  And I spoke.

For about four or five sentences.  And here was my mistake - I looked at the people.  I looked at this group of people fighting for the rights of mental health consumers and here is what I saw... two or three looks of respect.  Two or three looks of pity.  And the rest could only be described as looks of contempt.  "Who the fuck is this girl, who thinks she knows anything?" is what I saw in the rest of those faces.

And then I just couldn't get the words out.  I faltered, and I stopped talking.  I didn't finish what I so desperately needed to say.  Although, while they continued to hash out the money and power crap, I figured that not one of them would have listened anyway.  They didn't care about consumers.  One woman spoke of "participants" during the whole two hours, and when I thanked her for it afterwards, I used the term "consumer" and was lightly reprimanded.  Well, sweetheart - first of all - who gives a fuck, and second of all - I will self-identify any damn way that pleases me.  And I say that the way that I say it because when she spoke of "participants", it was this:

"We are the ones who have to face participants and explain to them that there are no services available."

I know... good right?  Great, especially considering the context of the day...  But then she fucks it up...

"And we are the ones who have to deal with that.  We are the ones who have to ..."

Umm...???  Excuse the fuck out of me, but aren't consumers, oh, I mean, participants, the ones who have to deal with that???  This is a public forum, not a staff meeting.

When the meeting finished, I looked around and thought "what's the point?"  I just couldn't imagine how the hell consumers have any chance when people are just worried about their jobs and their funding and their "turf".  If it had been a meeting FOR staff alone, then yeah, I get it.  But it wasn't - it was a public forum.  There's a time and place, and this wasn't it.  Not for the whole two hours anyway.

I went to my car, trying hard not to cry, and I drove away, soon bawling my eyes out.  I'm just me... I don't know what to do next, or how to fix this problem.  I get why they feel the way they do, and I know there's an answer, but I'm not about to get sworn in as Premier, so what the fuck can I do?  Apart from cry like a girl, which I did quite well.

Until I was about ten minutes away.  And then I thought - NO!  FUCK NO!  I am not going down that easy.  So I turned the car around and I went back.  I was hoping to catch the government troop, and I did, just as they were leaving.  And they were lovely lovely people.  Of course, maybe they were just yanking my chain, but if so, they were really good at it :)

And they let me talk.  We talked about why consumers don't turn up, and I told them that consumers don't know about it.  They told me that they have given NGO's and NFP's all the information to pass on, and I said that not everyone is using these services, and even if they are, it doesn't mean that the organisations are passing the information on.  And even if they are, that generally speaking, consumers don't trust them - at least, not like that.  That lady I spoke of - she told me that no "participants" wanted to come even though she had told them, and I straight away thought, well, if you told them like that, no fucking wonder.  Did you offer to help them get here, or tell them they didn't have to say anything, or find out why?  Did you give them the tools and space to be comfortable with the idea?  Or did you just ask?

And we talked about my finding out how to get more consumers to participate.  Because at the moment from the sounds of it, less than 5% of the voice for this Committee are consumers.  And that has got to change.  I simply don't believe for a second that people don't want to have a say.  I believe that there are obstacles, and I want to find out what they are, and how to get around them, but I don't believe that people don't want to have their say.  Mental illness affects every single fucking aspect of your life, so this shit is important.  And people with a mental illness aren't stupid.  They're treated as though they're stupid, but they're not.

This meeting made it clear to me that this is all fucked up.  The government is effectively asking NGO's and NFP's and state employees what consumers need.  And they are telling the government what consumers need.  What we need is a system where consumers tell the government what they need, and then the government asks the NGO's and NFP's how the fuck they're going to provide it.  And quite honestly, I think that the government guys I talked to would actually be willing to do this if they knew how.  So I'm going to try and help them with that.

For the record:

* The government guys told me that this was the most "focused on one topic" group they had seen.  They said they were surprised and saddened that not more consumers turned up.  I told them that I was glad no other consumers turned up, because listening to that shit was truly horrifying.

* Not all NGO's and NFP's are like this.  And quite honestly, I don't think all these guys would be like this all the time either.  I think it was one or two who lead the pack, and the rest followed.

* One person stated that as an employee of an NGO, they couldn't speak freely.  The same was said of the government.  And I'm wondering - What the fuck?  Why not?  What's the point of this, if it's not transparent?  Why are we giving tax payer money to NGO's if they are not transparent?  There's a whole lot of wrong there...

* The government guys treated me with respect.  And I respect them for it, and I thank them for it.  I left there, the second time, on a total high, because they listened to me.  I don't know if they agreed with me, and I really don't care - they listened, and quite frankly, sometimes that is enough.  On a personal level.  ;-)  On an advocacy level... well that's a whole other story :-)

So my plan now is to work out why consumers don't speak up, and how to fix it.  Stay tuned...


  1. Thanks for your passion and caring. Hard to know what more to say and keep a civil tongue, being a govie employee and all and needing to be careful with my language. I feel your frustration.

    It’s also the lower paid employees and the vol carers in the NGO services, the ones who have closest contact on the coalface who get left out of these consultations. I rate hearing the voice of consumers, as critical.

    I will share this post with some local influential people who may get word out to local consumers. I hope we can get more consumer involved in the consultation.

    I have submitted to the commission in round one, that consultation via social media will be an important strategy for ongoing engagement. All I can say keep tweeting and blogging. It builds.

  2. If there's another occasion and you have a phone with camera, I'd appreciate pics of the slides so we get an idea of what's being said. Ought to be in the public domain. You can tweet them too.

  3. I've been to several mental health forums recently where I have been accepted as an equal until the moment I share I'm not just someone working for a mental health NFP, I'm also a 'consumer' - a person living with mental ill-health. At this point I've been looked at with eyes saying "well what the bloody hell are you doing here then", body language has changed and some MH professionals, perfectly happy to speak with me prior to this knowledge, can't get away from me quick enough. It's heart-breaking. But, like you, I won't be giving up any time soon. You're a phenomenal force for good Linda. I'm behind you 100% xo

  4. "What we need is a system where consumers tell the government what they need, and then the government asks the NGO's and NFP's how the fuck they're going to provide it."

    This is where I am going in about 2.5 hours. A forum for consumers to have their say on future quality outcomes for NGO's who have to become more accountable with the money that is given to them to provide the services for the consumer.

    Linda, I get to give a ten minute talk on "What Consumers Want", I have written more than I can say and I will be passing that onto her. And I will be emailing her your column as well. I am able bodied with a car, and a big mouth, not all consumers are. You have given me much food for thought.

  5. Maybe I am just thick, or just passionate, or I just don't care, but I have not found this to be the case with me. I am treated with utmost respect like an equal. I don't feel inferior because I am a consumer, I feel fired up, enthused and excited about mental health and having my say.

  6. Very eloquently said Linda.

    I can tell you that I always speak freely and no organisation government or non-government is going to take that right away from me. It’s our democratic right to freedom of speech, Consumers must be encouraged and supported to attend these meetings and speak for themselves. If they are unable to attend organisations should be assisting consumers to provide a response through
    • www.getinvolved.qld.gov.au/gi/consultation/200/view.html
    • Email the QMHCTT: QMHCTT@health.qld.gov.au
    • Call the QMHCTT on Ph: 07 3406 2676

    Hopefully out of these consultations the advisory council will gather enough feedback from consumers in order to clarify what consumers need and want and not what NGO's and NFP's want.

    It is very unfortunate that some NGO's and NFP's only go along to the consultations to further their own personal agenda's and the agenda's of some high level organisations onto groups and individuals that turn up to these consultations.

    I have had different experiences in different consultations, one similar to yours and a couple where I was treated with the utmost respect. It will always depend on a combination of who comes along from the advisory group and who turns up with a specific agenda they wish to force on the group.

    Here is my two bobs worth:

    Consumers & Carers (C&Cs) already know what they want:
    • We want significant change from the existing culture;
    • We want new money with extra resources set aside for C&Cs, new players, new services, and new voices at the highest levels;
    • We want direct access to decision making in a transparent process;
    • We want consideration to be given to having a commissioner with a lived experience in southern, central & northern areas – too often its all about the Brisbane area;
    • We want to determine the types of markers that are utilised for monitoring;
    • We want better quality services that professionals want to give and consumers want to receive;
    • We want to have a genuine, meaningful & equally valued involvement in the Mental Health Commission (MHC);
    • We want need new leadership that includes professional experts and consumer and carer experts.

    We want MHC Commissioners and Staff selected on merit through a fair, open and transparent process otherwise this will just be another bearuacy.

    We don’t want this to be just health dominated, this needs to be wider than that and kept in line with Social Inclusion / Recovery concepts across the lifespan; including employment, disability, education, criminal justice system, housing, centre-link etc.

    If the commission is really serious about transformation, they need to show a genuine commitment to real change. They need leadership that not only talks about change but ensures genuine organisational transformation.

    The commission needs to show us what is going to be different and how will we know?

    Consumer Advocate

  7. Anonymous - go wild. I don't get your email addy, so no one can tell who you are :)

    Unknown - it's on my to-do list. I've been busy as (and wiped out) since then.

    Ali - (((hugs))) Thanks sweetie.

    Sonia - your experience gives me hope that either a)it'll get better or b)it's just me. Although I know it's not just me, so... shall have to stick with it getting better :)

    Michael - thanks for that awesome comment :) It got stuck in spam for a while (maybe because of the links??? I don't know) - sorry about that.

  8. you are very welcome - my email address is