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My patience with the mental health system has run out

By joingler - 7 October 2012 31

I am posting this partly as a rant and partly in the hope it will be picked up my a polly and something will be done about it. I intend to write to all candidates for all parties before the election outlining my concerns and experiences so something can be done. I don’t want sympathy from this post. I want something done. I’d appreciate it if I could get advice on how to best communicate my issues to pollies when I write to them (leaving it too late).

Before I go on , I would like to emphasise my gratitude and thanks to the nursing staff at both mental health wards as well as my former case manager Melina from Belconnen Mental Health. All the nursing staff as well as Melina did the best they could in impossible circumstances. In particular I’d like to thank Leigh, Ally, Kevin from Calvary and the male pommy nurse at TCH (forgotten his name). The police also did an amazing job in helping me but the overall mental health system was shocking.

I started last year as a happy 19 year old guy. Due to falling out with friends and a lost job my mental health went downhill very quickly. The end result was severe depression and a few psychotic episodes.

I had 4 visits to the psych ward in 2011. A brief outline of my stays:

    May – admitted to hospital after police came to check up on me and found me stabbing myself with a knife. 2 weeks stay in PSU (TCH).

    September – I had been close to 72 hours without sleep. I could not sleep due to me being unable to control my thoughts. I tried all the usual tactics – classical music, meditation, Simon & Garfunkel, yoga, sleeping tablets but nothing worked. I rung the CATT team at about 3 am on the 3rd night. The operator told me “If you try a bit harder I’m sure you’ll be fine.” I then overdosed on something (probably sleeping tablets but again, my memory is quite fuzzy) and ended up in TCH again. This was after punching a paramedic in the chin while he tried to help me (if you are reading this Mr Paramedic, please accept my apology. You deserve a lot better than that). When I got to TCH I spent a week under 24/7 guard in drug & alcohol ward then was transferred to PSU. In PSU I spent 1 week in the High Dependency Unit (HDU) then was put in LDU. After 2 weeks in LDU, I told my doctor (who I’d love to name but I don’t want RA getting sued) that I felt I was getting a lot better but I’d prefer another week or so in hospital as this would help me. He agreed and promised me he’d keep me in for as long as I wanted. The next day I was told to pack my things as I was being discharged. I asked the doctor why the sudden change of mind and he said I was fine and didn’t need to be in hospital.

    I went back downhill about 4-5 days after being discharged and was taken to MHAU a few more times but was never admitted.

    December – After another overdose, I was taken to Calvary Hospital. I stayed for 6 weeks which was longer than the nurses, doctors and social workers wanted me there but I was pretty much homeless so they couldn’t really release me. My stay in Calvary was excellent compared to my 3 visits to PSU. The nursing staff there would come around once – twice a day to talk. They’d leave me if I didn’t want to talk but would stay and talk to up to half an hour if I did want a chat. The food was (slightly) better and I was allowed to leave the ward at any time to go the gift shop/cafe. The PSU was almost a jail – all visitors were searched before entering, the TV was only allowed on between 4pm and 10pm on weekdays and 9am til 10pm weekends, and I wasn’t allowed my laptop or Ipod despite the fact I could lock my room. At Calvary, the TV was allowed on all day every day except between midnight and 7. The staff let me have laptop/ipod on the condition I accepted full responsibility for it (fair enough). And no one was searched on entering unless there was suspicion they were carrying drugs or something along those lines. The nurses at PSU were nice and tried to help but they were constantly dealing with duress alarms that went off every 45 seconds due to patients strangling each other, patients families threatening nurses/doctors and also the fact they were faulty. There seemed a ridiculous amount of paperwork as well.

I do understand that PSU has to be stricter as the patients there are a lot worse. And I do acknowledge that PSU has now closed and a new mental health ward has reopened. I have not seen the new ward and am unsure if it is any better (I hope I never have to find out). But PSU  was a dark horrible place. One other patient who I was in with in me June stay told me that he found PSU to be a worse place than jail – he spent 2 years in a NSW jail on armed robbery and drugs charges. To me that signals a major problem.

The doctors in both hospitals did not appear to listen to me. In Calvary there was only 1 day where there was a doctor in the ward between Christmas Eve and New Years Day. I assume they had one on call but I am not certain of this.

After being eventually discharged from ward 2N from Calvary, I had a short stay in a few homes before moving into a home run by Mental Health Intensive Treatment Team Northside (MITT North). I am finally stable and am holding down a part time job. I live in a 3 bedroom house and I currently share with 1 other guy. I’ve been told to contact MITT if any problems occur. I get along with the guy I share with but we tend not to have much to do with each other. In the last week though his health has gone downhill. He has been hallucinating everyday – laughing his head off at strange hours, talking to himself much more than usual and writing random words on walls, tables and anything else he can find. Everytime the phone rings, he gets me to answer and to tell them he isn’t home. I am unsure who ‘them’ is but it would probably be mental health who call to check up every now and again. I haven’t thought much of it as he isn’t hurting anyone (he has never threatened me at all). But earlier today, he stood in the hall spraying air freshener into the hallway. When he finished, he got in his car and left. 10 minutes later he was back with a new can of air freshener and did the same thing in a different spot of the house. When he finished, he did the same thing. This happened 4 times in total. After the fourth time he collapsed into an armchair and started sleeping. The house does not have any ongoing cleanliness/smelly problems and I am now unable to leave my bedroom without slipping over slippery floors due to the air freshener.

I decided enough was enough and called MITT Team. There was no answer which I assume is due to the weekend. I called the CATT team who are pretty much useless but I figured I’d be better off telling them than nobody. Well it went straight to message bank. I wasn’t even put on hold, I was just told to leave a message. I left a brief message with a phone number and haven’t headr back (nearly 2 hours). I rung police but they said they can’t do anything unless he is hurting either himself or someone else. I fully understand this. It isn’t their job to be mental health workers.

The mental health system in the ACT is pathetic. All last year I had doctors (both inside and outside of hospital) that didn’t listen to me. I had counsellors tell me what they thought I wanted to hear. I had the CATT team continually fail me and only managed to stay alive through sheer luck and 1 friends total commitment to see me get better. But now, I have an after hours issue and can’t do anything about it for 48 hours. Having seen schizophrenic patients before, he could turn violent towards himself or someone else very quickly and I can’t get him the help he needs.This is the final straw. I have put up with a lousy system for over 12 months but when I can

Again, I would like to say a big thank you to Melina at Belconnen Mental Health. She was a fantastic case manager, checking up on me more when she felt I needed it but less when I was doing better (and she always knew how I was). The nursing staff at both hospitals were fantastic  to me and other patients but the doctors and psychologists were lousy. The system was underfunded and understaffed (especially at PSU). Ward 2N at Calvary was a nice visit. I honestly think if they tried to replicate the way 2N is run to PSU at TCH, it would be a much better place for staff and patients. I understand it has to be more high security for some but not everyone needs that high security. I really do hope the new Mental Health Ward at TCH has allowed this to happen.

Finally as I post this, my flatmate is now pouring a bottle of shampoo down the sink. He is obviously more bananas than Phillip Pocock. But there is nothing I can do to help him.

What’s Your opinion?

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31 Responses to
My patience with the mental health system has run out
Masquara 11:57 am 08 Oct 12

c_c said :

m_ratt said :

Caffeine was not available to patients (only decaf instant coffee provided, and no cola in vending machines), though staff organised semi-regular cigarette runs for nicotine-addicted patients.

I would assume the lack of caffeine is to avoid any potential interactions with medication or adverse effect on certain patient conditions.

Look out for lawsuits down the track, ACT Health, from lung cancer sufferers whose cancer was “caused by ACT Health nurses purchasing cigarettes and handing them to patients”

breda 11:48 am 08 Oct 12

You say that “Due to falling out with friends and a lost job my mental health went downhill very quickly. The end result was severe depression and a few psychotic episodes.”

Falling out with friends and losing your job do not cause psychotic episodes. I suspect that the reverse is more likely.

The lack of insight and objectivity which characterises your opening statement casts doubt on the rest of your story.

That said, I don’t doubt that the mental health system is lacking. The problem is, who can point to a mental health system that is performing well? If not, why not?

Like child protection, it seems to be a bottomless pit of financial demand with not much in the way of real results to show for it.

peitab 11:42 am 08 Oct 12

Firstly, I’m so happy that you’re doing better. Don’t stop trying to find the services that are best for you – after all, that’s what the system is there for. And please talk to someone, perhaps even RA, whenever you need to.

But there is never any excuse for physical/verbal attacks on police officers and health workers. They are only doing their jobs and trying to do what’s best for you, and frankly do not get paid enough to suffer through these attacks.

joingler 11:24 am 08 Oct 12

To those who are worried about me don’t be, I’m fine.

I am now fully stable and working part time. I still live in a home run by MITT for two reasons
a) they are worried I’ll relapse
b) I don’t make enough money to save for a bond and live anywhere else. Once I finish my traineeship, I can move up in the ranks at work and have some disposable income

I haven’t had any mental health issues since March. I was posting this simply because I am totally peeved off with the way I can’t access any help for others.

JC said :

So what exactly do you want ACT Health to do for you? From what I’ve read they have helped you at every opportunity.

Here are a few things they could do. I am not in need of help anymore but others who are can’t get the support they need.

– Perhaps have a service on top of CATT team who can actually help people when they are in crisis. At the moment CATT will do nothing unless they are certain the person is a threat to themselves or others. I think that this fine if you can have another service that. I’m talking about a service that can
come out to you if you’re feeling really bad but not suicidal. Not a counsellor, just someone to hang out with for a while. Doesn’t need to be 24/7 (although that’d be nice) just in business hours would make a huge difference

– Perhaps have CATT team there 24/7. This is what is meant to happen but hasn’t worked for me this weekend.

– Not discharge people from hospital when they aren’t ready. Have a plan for them. This was only done on my visit to Calvary.

– Build a third mental health ward that is low or medium security. Not everyone needs to be locked up in PSU (admittedly there was a time when I needed to be)

– More outpatient facilities. I had a case manager and psych a Belco Mental Health. As I said, the case manager was amazing but this is not enough. How about social workers that will hang out with you for a few hours a week? A walk around the lake (or part of it), a kick of the footy, afternoon tea at a local cafe. A few small things like this each week can make a huge difference

– Building on from above, have more community programs. Part of depression is often loneliness (it was in my case and the same with others who were in hospital). Encourage patients to get out there and join a bushwalking club or do a social sport like Table Tennis or Mountain Biking. Craft programs as well. (I hate to generalise but many of the schizophrenics I was in hospital with were amazing at drawing).

farnarkler 11:19 am 08 Oct 12

I hate to be the Devil’s advocate but tell me, where does the money come from? The ACT budget is only so big.

miz 10:46 am 08 Oct 12

Joingler, heartfelt wishes that you find your path to wellness soon, and that you are able to negotiate ‘the system’ in a way that helps you.

Agree with Dave about the ‘quack’ he mentioned. Our family had a very ‘bad and dangerous to know’ experience with that person, involving a close family member. The quack, who held a senior pos in ACT mental health, expressly stated to the family member that treatment was pointless. Left with no hope for resolution, the family member suicided.
A quadrupling of actual PSU ‘beds’ is urgently needed. The PSU is so stretched that its primary focus is to get rid of patients currently occupying allocated places. No wonder there is little room for proper treatment processes. Due to the fragmented nature of community mental health services, discharging patients too early just promotes churn, delays and consequent worsening of their condition(s).
Also, it just does not help patients to re-traumatise them by making them re-tell their issues every five mins to each new professional – The CATT (crisis) team in particular is bad on this. Professionals should be reading the bloody clinical notes!!

bundah 9:34 am 08 Oct 12

Mental health has been sadly neglected for years in this country and it’s only in the last year or so that Gillard has taken steps to tackle this ever increasing problem.While the additional funding is well overdue i fear it’s not enough and we are playing catch up which is why the problems you’ve highlighted will obviously take time to address.Unfortunately it appears that unless you find alternative accommodation you will continue to be subjected to behaviour that is not conducive to your own personal well being.

JC 8:27 am 08 Oct 12

So what exactly do you want ACT Health to do for you? From what I’ve read they have helped you at every opportunity.

Flossie 8:16 am 08 Oct 12

Link to the Private health insurance ombudsman re waiting times for pre-existing psych conditions

Flossie 8:12 am 08 Oct 12

The CATT team is useless. Completely useless. (in the way it operates, not the individual workers)

A suicidal relative has called them in desperation and they advised a milky drink and a warm bath.
Ummmm, how can they not understand that by the time you call them, the time for milky drinks is long past. Then, when my relative landed at the ED, the CATT team is called once more, where they declare that we should have tried to get help sooner. No shit Sherlock!

The public system tends to release patients based not on the patient being stable, but based on someone sicker needing the bed. Amazingly, there is a trend of readmission rates that are much higher than they need be.

Canberra desperately needs some step up and or step down facilities for people leaving the hospital. Mostly, a patient is discharged with little or no community assistance in place. Public waiting lists for psychologists are woefully over prescribed, and the sessions covered under Medicare have been cut back, and in any case there is often a substantial out of pocket component, that can be difficult for someone who has their employment limited as a result of mental illness.

On the up side, private health insurers are, through legislation, unable to make someone serve more than a two month waiting period, even where there is a pre-existing condition, for psychiatric, rehabilitation or palliative care.

There are only 20 private psych beds in Canberra, but there are some good places in NSW.

Good luck all, and don’t forget that lifeline is there 24/7

yellowredme 7:29 am 08 Oct 12

The mental health system sounds madening in itself, it would be a hard thing when the system that is supposed to support and nuture you back to health also takes its toll on you. You have articulated what you have been through very well, you have insight, you are rightly angry, you know things can be much better, that is half the battle, keep in there, do kind things for yourself, get out of that house for a breather and have a break from the issues the other guy is going through, you are probably worried about him but at the moment you cant do alot for him, just keep yourself safe. It is a lonely road but know that you are not alone, I have supported a friend or two through mental health issues and in the processlearned so much about life and what makes me tick, including that it sometimes doesnt take much for any of us to

davesact 2:51 am 08 Oct 12

Mate… It worries me you have self harmed. I’ve read your post & all I can say is don’t stop looking for a combination of services, meds & therapy that works for you. I have experienced the system in the ACT & it’s had to deal with me for 30 years. There is a happy end to the story but whether you discover that peace in 12 months or 20 years is the hard part.

I’m old enough not to care what people think today but in fact I believe the lock-up brick garden wall was raised a few feet because I decided to catch the bus one day. The craziness at the time was the free bus ride, a beer at Filthy McFadden’s (supplied by the publican) access to a newspaper which I had been deprived, and a free bus ride back where to the ward where I surrendered to cranky staff & police. It was hazy but whilst making decaf coffee a little old weird lady smiled at me whilst she wet herself and it simply drove me over the wall. The Watchhouse and court holding orders are not unknown to me but thankfully a long time ago.

My point to that exposing ramble is I believe the environment has probably improved in the lockup in the past decade and though I haven’t experienced it I have pondered the effectiveness of inpatient care and what I expected of it. You go to the hospital and they fix the pain right? Stop the crazyness? I can only speak for myself but they can’t. I found its only real benefit to me was to put me in a safe environment which kept me out of trouble. Largactil & Diazapam and off for a shuffle and to bed. Psychotic events are not only embarrassing they can be life changing in the eyes of society & the law.

Do they even know what they are treating in your case? I hope that Quack Gupta wasn’t involved. I’m not much one for labels but if you’re a ‘classic DSM whatever’… take the meds, be regular and responsible and if things are going ok don’t question whether it is the drugs or not. I fully believe in a lot of circumstances, properly prescribed, Psych Meds help cope with the symptoms but I also think it is important to note that it may not alleviate all the symptoms and life will still have its ups and downs… That’s the same for everyone. That’s ‘normal’. It’s important to recognise that.

So I don’t think these inpatient services, back then or today, offer much more than a contained safe facility. Apart from that I think it is unhealthy housing mentally unwell people of varying diagnosis, usually in crisis, together. At times I found it frightening and distressing… for them.

That’s my thoughts on Inpatient care but outpatient care in the ACT system if its any sign of hope for you, eventually, saved my life. It took me 30 years, hopefully your journey won’t be so excruciatingly long. One final thing… diagnosis’ and meds are one thing. The baggage you pick up along the way whilst your ill can seem insurmountable. There is a lot of effort required on your part and a personal realisation that there probably is no cure if you’re a ‘classic’… only coping strategy. This (sort of) happy ending requires a correct diagnosis and in this town that has been a worry. Good luck. Don’t stop trying. Breaking free from the “pysch ward” shouldn’t need jumping over a wall.

c_c 2:22 am 08 Oct 12

m_ratt said :

Caffeine was not available to patients (only decaf instant coffee provided, and no cola in vending machines), though staff organised semi-regular cigarette runs for nicotine-addicted patients.

I would assume the lack of caffeine is to avoid any potential interactions with medication or adverse effect on certain patient conditions.

Masquara 12:29 am 08 Oct 12

joingler I hope that you come through this terrible time and find a stable environment to live in, and can find a way through medication or something to be less dependent on the mental health services team and free yourself from all that. Thank goodness for Canberra’s clean air and access to so many free resources like the National Library, and the bush – surely your situation would be far worse in say Newtown.

m_ratt 9:20 pm 07 Oct 12

After spending far more time (as a visitor/carer) in the MHAU (ED at TCH), the new AHMU (TCH), 2N (Calvary Public) and Hyson Green (Calvary Private) this year than I had ever anticipated, my experience has also been generally disappointing.

I recognise the names/descriptions of some of the people you thank, and agree that there are some fantastic people working within the system. Unfortunately there are also a number of not-so-fantastic staff (particular at the AHMU – albeit chronically under resourced and disorganised in my experience), and a general lack of effective targeted treatment.
An involuntary week in AHMU resulted in a ‘comedy’ of errors counterproductive to any treatment. I’ve been through the feedback/complaints process with AHMU, and been assured that things were either out of the ordinary or are in the process of being changed.
We’ve not been back to for any further experience, though I fear systemic issues will still persist.

The new AHMU unfortunately has a one-size-fits-all security model for the LDU. Visitors must be escorted in and out, all bags searched, however every patient has individual electronic (RFID bracelet) access to their room. The wide variety of patients and anti-social behaviours present made the place feel most unwelcoming for my wife. In my opinion the building was designed full of ‘feel-good’ philosophies with marginal real-world benefit – the ‘socialisation spine’ being a prime example. Caffeine was not available to patients (only decaf instant coffee provided, and no cola in vending machines), though staff organised semi-regular cigarette runs for nicotine-addicted patients. A patient without outside support could feel incredibly isolated.

Whatever you do, do not get transferred to the AHMU late on a Friday afternoon…

Unfortunately (as our private psychiatrist in Canberra identifies), the public hospital system model of care simply doesn’t fit well with the duration of intensive treatment needed for some chronic mental illnesses.

Thank goodness for private health insurance which has (in the last three months) covered $40k (and counting) of specialist mood disorder treatment interstate, at a standard and model of care simply unavailable within the ACT. Unfortunately, this option is not available to everyone.

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