Dear Mr Hickie

I am what you might have thought of when you referred to "armchair critics" in your opinion piece in Fairfax Media on the 23rd September.  I am a mother of two, and a mental health consumer.  I am also a "critic" of the new mental health reforms.

First of all, you speak of "$2.2 billion to new programs".  Let's be honest shall we?  It is NOT for new programs, it is for the total mental health budget.  And it is the total mental health budget for the next five years - a point that seems lost on some.  It is not even the correct figure.

The total spend over the next five years is $1 463 300 000.  $316 200 200 was already earmarked from previous budgets, so only $1 147 100 000 is actually new money.  $1.1 billion is a far cry from $2.2 billion.  I'm not even totally sure where the $2.2 billion figure comes from, other than political spin, because I can't find it anywhere.  Even the government here, says the budget spend over the next five years is $1.5 billion.  For now, I'll assume that they mean their Ten Year Road Map for mental health or something.

Aside from all this however, is the $580 500 000 that has been cut from Better Access.  $580 million CUT from the budget.  $580 million that people such as myself will now have to find.

Your article points out that the changes "will greatly increase the number of services provided and, most importantly, access for those with the least capacity to pay privately".  I am on the Disability Support Pension, and as my carer, my husband is on the Carer's Payment.  I consider us to be about the least capable of paying as you can get.  Ideally, I need to see my psychologist every fortnight.  Every week would be great, but I don't mind keeping it real.  The current eighteen session cut off leaves me with eight fortnights to find the full fee myself.  After the changes go through, I will have to find the money for sixteen full fees.  Possibly twenty, depending on what the criteria is for the additional four sessions.

I have heard of all manner of other alternatives, and I can assure you that I have either tried them to no avail (medication, inpatient services), or been turned away (public mental health outpatient services).  ATAPS is not an option as I don't know a GP who is eligible to refer, and other GP's here have totally closed their books to new patients.

Seeing my current psychologist is the first time I have felt "better".  And that is about to be ripped away from me because I can't afford to pay the full fee privately.  Your argument on behalf of those least able to pay makes no sense at all to the people who are actually living it.

In addition to this, I will have to come up with the same fees for my son, who has Asperger's and needs psychological appointments to help him learn how to regulate his emotions.  As he was diagnosed after his sixth birthday, we are not eligible for funding from the Helping Children With Autism Package.  This is on top of his speech therapy and occupational therapy - a total out of pocket of $285 a fortnight.  We live rurally - there is no other alternative for him here and we are not in a position to move.

Let us step back for a moment, and suppose that these new services WILL cater to our needs.  Our sessions run out on November 1st of this year.  This mental health reform is a five year plan.  At what stage in that five years is our local area going to see some new services that we can utilise?  What are we to do in the meantime?

And let us not forget the issue of continuity of care shall we?  I've been seeing my psychologist for three years.  In that time, I've developed a physical disability.  Most of our sessions to date have been dealing with issues that have arisen from that, thus, even after three years, my psychologist is still acquiring my history given I've led quite the eventful life.  To change over to another service will mean all that time is lost - wasted - as I will have to start over with someone new.

The second point you raised was the issue of attacks on the evidence of the new approaches, and indeed, exactly what these new approaches consist of.  Given that I am not a health care professional, I can not in good conscious debate that point in detail here.  I will say however, that I have done enough tertiary study in statistical analysis to be highly sceptical of the studies I have read.  The outright lies (such as $2.2 billion of new money), do not help your credibility either. Nor does the fact that yourself, and many of your cohorts, fail to disclose any potential conflicts of interest.

Your third point that "academic voices have expressed concern that expanding services to include early intervention will come at the expense of desperately under-developed services for those with chronic or persistent illness" and that "no such debate characterises similar advances in cancer or heart care" can be rebutted with a simple - in other areas of medicine, early intervention is added to advanced treatment.  In the case of the last budget, funding was taken away from the only advanced treatment that some of us have available to us (Better Access).

The fourth and final argument you stated is that "a very peculiar commentary proposes that mental health academics should not engage with the broader public debate".  From what I've seen, there seems to be more of a concern that some of those academics have their own agenda's to push at the detriment of consumers; and that consumers themselves need to consulted as well (which is not happening effectively), as they know best what works for them.  And usually what works best for us is choice, because we are all individuals and we all need different things, even if our "diagnoses" are the same.

Your final statement that "those governments (including NSW) that are making genuine attempts to develop a mental health system of which we can all be proud need the public's support" is truly a laugh.  If the current developments were indeed "genuine", I imagine there wouldn't be such opposition to them.

And so Mr Hickie - your arguments may work at your dinner parties with friends - but down here in the dirt where we struggle every day living this nightmare - your arguments simply smell like bullshit.



Note: In order to keep this blog relatively small enough to read in one sitting, I have left out quite a few finer points - and there are many many finer points.  Please don't think that they have escaped me.  I simply wanted to keep this as an overview rebuttal of the article Mr Hickie wrote.


Figures from the 2011-2012 budget.
Budget
Delivering National Mental Health Reform

	Total funding	Old funding	New funding
Leadership in mental health reform	$64,100,000.00	$64,100,000.00
Coordinated care and flexible funding for people with severe and persistant mental illness	$549,900,000.00	$206,100,000.00	$343,800,000.00
National Mental Health Commission	$32,000,000.00	$19,800,000.00	$12,200,000.00
Mental Health Online Portal	$14,400,000.00		$14,400,000.00
ATAPS	$205,900,000.00		$205,900,000.00
Support for day to day living in the community program	$19,300,000.00		$19,300,000.00
Expansion youth mental health - headspace	$197,300,000.00		$197,300,000.00
Health and well being checks for three year olds	$11,000,000.00		$11,000,000.00
National partnership agreement on mental health	$201,300,000.00		$201,300,000.00
Research funding	$26,200,000.00	$26,200,000.00
Family mental health support services	$61,000,000.00		$61,000,000.00
Employment services	$2,400,000.00		$2,400,000.00
Four mental health infrastructure projects	$78,500,000.00		$78,500,000.00
	$1,463,300,000.00	$316,200,000.00	$1,147,100,000.00
Better Access Initiative - rationalisation of allied health treatment sessions	-$174,600,000.00
Better Access Initiative - rationalisation of GP mental health services	-$405,900,000.00
	-$580,500,000.00

A Day In The Life Of The Suicidal - Governments take note.

Yeah, this could get depressing.  So if you're feeling suicidally inclined yourself (or even just a bit sad), then best to read something else.

Or not.  Your choice.

I really hate it when people tell me not to read depressing things when I'm suicidal or upset.  Like something that someone else is going through is going to set me off.  Because obviously having a mental illness equates to having absolutely no free will whatsoever.  There may be people out there who need a babysitter when it comes to literary choices, but I reckon they're a lot fewer than people think.  Reading the crap that other people go through actually makes it better - more normal and less lonely.

Wow.  A whole big paragraph and I haven't sworn yet.  That's gotta be some kind of fucking record.

:-)

So, in case you haven't guessed, I'm not having the best of days.  Screw that.  I'm suicidal, no two ways about it.

I have body spasms.  Every second, or every minute, or every hour, depending on my level of thought at the time. The more I think, the harder and faster they come.  The bad thing about them is that they scare the kids, they jolt my already painful joints so they hurt like a bitch, and they're just plain annoying.  The good thing about them is that for a few seconds, they release the tension in my body.

Downstairs, I have an art centre.  An easel my husband made for me and an old set of drawers with paints and brushes and what-not in them.  It's nothing much, but it's perfect.  The only thing that is missing is some decent music, because I haven't got around to doing that yet.  An hour ago, my husband tried to convince me to do some art, to see if that would help.

Husband: Why don't you go downstairs and do some artwork?
Me: (thinking about all the prep I'd have to do first - jerk - my body, not my husband). Yeah, maybe not.

Just thinking about putting the effort into something sets me off.  Which is annoying as all hell, because my brain is raring to go.  I want to do art, I want to sing, I want to go for a drive, I want to go for a swim, I want to take the kids to the park.  And when I think about doing these things, I end up a jerking mess.

Thankfully, this is typed, or else you wouldn't be able to read it.

I feel sick.  Every time I get up I feel like I'm going to throw up.  I'm light headed.  Every ounce of my body is screaming at me to get back into bed.

Between the jerks/spasms, and the inability to actually get up off my arse and do something, I feel pretty damn useless.  Yes, logically I know I'm not.  But being suicidal isn't about logic.

I've been fighting my whole 33 years.  Fighting my mother.  Fighting my abusive boyfriend.  Fighting depression and PTSD.  Fighting physical pain.

Enough already.  I'm done.  My body is done.  I need a rest.

No one can take my physical pain away.  I have Ehlers Danlos Syndrome and that is that.  As for the emotional/mental pain... well...

We're bombarded with messages that if we feel suicidal, then we should call Lifeline, or some other call centre.  But seriously - what are they going to do?  What can they tell me that I haven't already considered?  Is there some great big solution to everything out there that I haven't thought about?  No, there isn't.  The only way to get through this, if I decide to, is to grit my teeth and wait it out as best I can.

I'm not a beginner here.  I've learned my meditation, and know to snap a rubber band against my wrist instead of cutting, and I've got "forget the next day - just get through the next hour, or the next minute" down pat.  There are great big lists of things to do in an emergency, and they are fantastic.  It's just - they don't work any more for me.  Or at least, they don't work all the time.  And I don't need to hear someone tell me something I already know like I either don't already know it, or like I'm just not trying hard enough.  I don't need someone who doesn't know me trying to tell me how to pick myself up.  It's not like my cat died, or my boyfriend broke up with me.

I know that it's politically incorrect to say that one person's pain is "more" than another's.  I'm actually not trying to say that.  If anything, the pain of a teenager who has just had their heart broken is far worse than what I am experiencing, which is not really pain so much as it's exhaustion.  Maybe that is why the standard shit doesn't work.

Once it becomes clear to call centre volunteers that my situation isn't going to be resolved with the therapy equivalent of a Hallmark card, they usually suggest presenting at hospital.  The last time I presented at hospital voluntarily for being suicidal, I was told that they weren't a babysitting service.

If I want someone to make me feel like shit under their shoe, I'll go visit my mother.

Plus, I want to see how Nikita turns out on Tuesday night.  So I'm good till Wednesday at least.

I have a bunch of ideas of how we can improve the mental health system.  Ideas that include everyone, because they assume nothing.  What we have now is a stock standard answer:

* Call someone (great but what if it doesn't work?  What if you require more than a chat with a stranger?)
* Go to hospital (safe, but boring, not good for getting someone in the "life is great" mood, and there's rarely enough beds anyway).
* See a psychiatrist (few of whom do therapy.  Most simply give a diagnosis and dispense medication, and few people can afford the gap fees anyway).
* Go to the public mental health team etc (ATAPS, CAT etc) (these are underfunded or mismanaged to the point that they only take psychosis cases.  There is little to no ongoing therapy for anyone else, and after I found out that my local team put a 10 year old on enough medication to kill a horse - no thanks).

Or

* See your psychologist.  Except the government has just cut the number of Medicare rebatable sessions from 18 to 10.

Fan-fucking-tastic.

Even with 18 this year, I've only two left.  She's great and all, but two sessions in three and a half months when I'm this suicidal is like trying to get a hurricane to reverse itself by blowing at it.  Next year I'll be allowed ten sessions.  May as well just let the fucking hurricane come by and sweep me up.  Use my energy to enjoy the ride, rather than try to fight the inevitable.  Leave her time to treat those who actually have a chance.

There are a lot of people at the moment speaking of their concern for people with a mental illness.  If they were so fucking concerned, they would be asking us what we need, instead of sprouting their own shit with a few token "consumers" here and there on their committees just to make it look good.  I don't want to hear from the people who have been saved by the current system so that Assholes (the capital A was intentional) like Patrick McGorry and Ian Hickie can get funding for their little pet projects.  I don't want to hear from the government who decides to put money into these projects, and pulls it out of other things that work so that they can (and in doing so, completely ignoring the over 25 year old demographic).

I want to hear from the people like me.  The ones who have been there and done that and have a fire to make some real changes.  People like me that know ANY committee that isn't comprised of consumers with at least a decade of experience in attempting to get well and being shit on, simply isn't going to get the job done properly.

I want to hear the fucking truth already.  Because I simply don't have the RAM left in my addled brain, to be arsed hearing anything else.  I want something that actually has a chance in hell of working to be considered for a change.  I want hope, so that I can consider living for tomorrow.