Community

[leitor]

@FrankGQuinlan Sorry, I've only had time for a quick scan of the draft since @NikNik posted the link.

As a carer one of my main concerns, and one that seems of concern to almost all the carers in the carer support and education group I attend, is that of patient privacy.

Too often we are told "There is nothing wrong with me", before they take to the hills, at which time the doctor/psychiatrist won't talk to us because of patient confidentiality.

I know there is a difficult balance to be found here, do you think the system is "about right" as it is, or is there room to move? The only area of the draft I saw being somewhat applicable here was  "Action 26", as the recent laws in Victoria seem to be somewhat better than in other states, although most medical staff I've encountered don't seem to be aware of the changes. 

[FrankGQuinlan]

I agree @MelLeighD - and together we have to campain for that change!

[matsionoah]

My first time in one of these forums, rushed home from work, have plan printed but not able to read it yet.  Jumped on computer and didn't know how to get in.  THINK I'm in now and hope I'm doing this right. I'm the mother of a 29 year old severely ill son.  Chronically psychotic since age 21, 6 months Thomas Embling Vic 2011 diagnosed schizophrenia (paranoid back then) ICE addict, now terrible junkie after languishing on a commmunity treatment order, in and out of acute psych wards at 3 different hospitals and last year finally made it to prison (police and magistrates know he's sick and bail him over and over but last year kept him) finally made it into secure hosipital December 2016 (fifth waiting list!!!!!) plan to FINALLY properly administer the only medicine that's proven to work on his delusions (in 2012 big mistake trying to do it in the community) only to have a tribunal hearing 5 weeks later, that I was able to attend despite him opposing it, where I very bravely spoke honestly to him and to the panel, that I feld heard me .. only to then get put back into the community on a community order .. this was devastating and I decided I had to give up, that there's nothing more I can do for him.  Did I mention he has no insight and the only things in his mind are his delusions and getting ICE that he uses to enhance them. It's amaxing he is till alive.  I am very, very angry about the shocking state of the mental health system.  My sister is a voluntary patient, became ill in the last couple of years, spent times in psych ward last year, fear a diganosis is coming up, she believes she is sick but is currently being prepard for a what she's been told will be a painful family meeting, my son has absolutely no insight, believes he is not sick, injured 5 people when they tried to give him his first depot at TE in 2011. My sister knows she is sick, her delusions are about her being sick and the whole family being sick, so she is voluntarily connected .. I think the whole system for everyone is a mess, but my biggest interest is those with no insight who are only in the sytem in the first place if they have a family member like me who will advocate for them. Legislaiton changes Vic 2014 gave with one hand and took away with the other in respect to more rights for the patient and involve carers more, I've seem this fail spectacularly .. started with a Dr housekeeping May 2014 in preparation for it, cancelled his treatment order, which took him off the secure hospital waiting list he was on a the time after I beleive his firts meeting with him, failed to include his parents at all but in meeting with him Oct 2014 organised by mental health complaints commissioner officer referred to new legislation starting July 2014, that had to take into account patient rights and oh by the way yes carers involvment, said sorry he didn't contact us.  He was out of control early 2015, and back in hospital and day he was discharged Dr said that Dr called and said he thought he needed to be in secu .. sigh .. around and around and around .. while he get's sicker and sicker and sicker.  Sorry for long post.   

[Phoenix_Rising]

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@FrankGQuinlan wrote:

@Andra I am lucky enough to hear many of those stories first hand, and I agree with you that many are the same.

But it is always better if people tell their own stories - it can be very powerful in politics!

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I guess part of the challenge of telling one's own story is the stigma. I really appreciate the anonymity of the forum here. In the real world I am still trying to find my way in terms of wanting to speak out...but also recognising that the stigma is very real

[FrankGQuinlan]

@Zoe7 I dont think we are doing enough to change attitudes quickly enough. But I think things aqre slowly improving.

Celebrities telling their stories helps to break down stigm - but their stories often dont include the bit about not being able to access or afford services 😞

They are the stories we need to keep telling!

[Andra]

I wonder what the plan is to ensure that people who are not eligible for the NDIS continue to, or be supported. I am in my fourth year of receiving a plan and it is only recently that I have begun to get supports in place in a meaningful way/ This si a wonderful opportunity but very stressful for people to negotiate. I worry for those who go through the process and are turned down or those whose services change and cannot deliver the support they need (not to mention those of us who fell out of the system into the too hard basket). What can we do to help ensure nobody gets left out?

[MelLeighD]

@FrankGQuinlan I was wondering what awareness/normalising strategies are being looked into for disorders like BPD in the review? I skimmed through the draft and saw a lot of plans for reorganisation of systems, especially online ones, but not much about frontline services, or education programs. Do you think there is room for education in high schools to help with early detection of specific conditions and normalising of behaviours relating to these conditions?

[MMHReal]

I too have been treated like a third class citizen by my locak mental health service. When i complained about my treatment, they ignore what they did. I was forced to go to hospital and was treated by arrogant doctors who scheduled me based on misinformation. I was held over the weekend with NO medical treatment or review then told on Monday i shouldn't have been admitted. Why do patients have absolutely no rights? Where is the accountability for poor treatment?

[NikNik]

Thanks @matsionoah & @leitor for your questions and sharing your perspective as carers

[Phoenix_Rising]

I think a big step forward would be to really push for a trauma-informed care approach in hospitals. This seems to be spoken about a lot, but I haven't really seen it put into practice yet.