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Challenging diagnosis & seeking trial off involuntary treatment

Challenging diagnosis & seeking trial off involuntary treatment

Hello,

Thank you to anyone who takes the time to read this and has any advice to offer. It's a long one so bear with me please.

My Dad (68) has been under an involuntary treatment (community, not hospital-based) order for paranoid schizophrenia with delusional tendencies for the past 17 years. His behaviour doesn't put himself or others at risk, his delusions relate to environmental factors in his home and diet purportedly negatively affecting his health (e.g. the paint in his home, non-organic foods etc).

He has always, from day one, objected to the diagnosis and fought treatment - to the point of even evading Police who come to escort him to hospital for depot (injections) of [edited by moderatored]. During the course of his treatment, he has continued to display many of the same behaviours despite being medicated.

Given his objections and constant absconding from treatment, in March this year Queensland Health transitioned him from a monthly dosage of **mg via injection to ***mg [edited by moderator] via injection every six months. Since then, he has continued to show many of the same delusional tendencies, if not having escalated somewhat. He has also been fairly tangential in his thought process and discussions.

Less than two weeks ago, he started suffering (or claiming to suffer, I can't confirm as I live far away) from shortness of breath, chest pains, lethargy and inability to complete relatively easy tasks. Purportedly due to factors in his home. Not being able to withstand the symptoms anymore he presented to his local hospital emergency where they did tests and confirmed no signs of any heart or lung issues, or causes of same. During the visit though, they administered a further medication [edited by moderator]; despite him being only four months into what was supposed to be a six-monthly dosage, which was - in itself - above the ***mg/month dosage he had been receiving and claimed negative health effects from. [edited by moderator]

Since that time he has been even more delusional. In the past week, for the first time ever, he mentioned to me that he thought his home had been broken into multiple times and items taken; and also that whoever broke in had found the location of his keys by listening to his phone calls or monitoring him via the camera in his computer. He's never displayed such delusions before.

So, I'm wondering - if his delusions are exacerbated by increased dosages - is there something that can be done to challenge the dosage? And, if his delusions have never been resolved by treatment, is the diagnosis correct? Is the antipsychotic he is being treated with actually working? Should he be granted a trial off his treatment, or at least have the dosage lowered? Noting that he will not agree to voluntary treatment and will continue to abscond from any dosage, as he challenges the objection.

I have no idea how to navigate the complex Queensland mental health system to support him. And I'm not qualified to challenge the validity of his diagnosis. I can tell you that he still has bouts of severe delusions, but I have not tracked how these time with his involuntary objections. Is there anything that I can do to support him?

12 replies

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In response to: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

Hi @JoK86 ,

Thank you for taking time to reach out to share a little about what's happening to your dad.

It's so important to feel connected to others who may have similar experiences.

Just a quick note, that because this is a peer-led site, members are not able to talk dosages of medications, nor name medication. This is in line with Community Guidelines. If you have concerned, it's important to speak to your Dad's treating team.

However, members can certainly share their own lived experience as long as they don't name medications and dosages.

I look forward to hearing members' responses.

Please take time to look after yourself. We recognise it is a very stressful time right now.

In response to: Re: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

Thanks so much for letting me know. And for moderating the post accordingly. Much appreciated

In response to: Re: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

No worries @JoK86 ,

I have been in involuntary treatment, but I don't know anything about the medication nor the depot so I can't share my own experiences of this.

@RiverSeal is on leave at the moment but once they are back at the end of next week, they may be able to share more about this.

There is also a thread Hearing voices and psychosis 🗯️ .

However, I know for certain that what you are going through is NOT uncommon. Many carers have posted about similar experiences in wanting to help their loved ones.

In response to: Re: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

@JoK86

It is great you care about your father. I can’t give clear advice, but some support for morale and just opening the conversation. Yes, I suspect you are right that the medication doesn’t really cure delusions, and some psychiatrists are honest about that. What are delusions anyway? Both my parents were given the Schizophrenia diagnosis a long time ago, and are both passed on. I researched a lot and became very reflective about issues like paranoia. When a person has been on involuntary treatment orders for so long, they would have experienced a lot of boundary violations. How that might influence their feelings and thought processes is probably different for each person.

there are legal advocates for the tribunal hearings. Not sure what state your father is in or if he has tried them. I am not fan of big pharma, and increased unnecessary medication. I believe The latest Victorian Health and Wellbeing Act 2022, has suggested it best people aren’t routinely rolled over each year on the involuntary treatment orders. And reduced maximum period to 6 months to be reviewed. Not sure which state you and he are.

I find many “normal “ people are concerned about healthy food untainted by chemicals and various boundary violations. At times when fear is high, thoughts can be impacted.

It would help if he had a decent private psychiatrist.

In response to: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

Hi, in Melbourne there is an advocacy service and legal service that helps involuntary patients.

I don't think the legal service is great. But I do know of caring lawyers who assist with people who need help in ur situation for ur dad

Im sorry u are struggling with this

.involuntary treatment is scary

In response to: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

@JoK86 Hi I am diagnosed with schizoaffective disorder and on an involuntary treatment order and a depot injection. It sucks honestly you get side effects and no one believes you and sometimes the meds do make things worse but again no one believes you because apparently you are just crazy so everything you experience must be in your head right. Ugh so frustrating if he isn’t getting better have you and the doctors considered there might be a physical cause has his home been searched for black mould or other factors that can cause illness. Has he been tested for autoimmune disorders? Also some people like myself don’t respond well to medication and are treatment resistant so that can be hard too. If you want him to get off the order you will need to find a private psychiatrist who is willing to take his case on but if he isn’t willing to see anyone then this might be difficult. Honestly his meds could be making him worse you won’t know unless they take him off it it is a hard system to navigate but perhaps talking to legal aid might be a start although form experience they are pretty useless but you can try and see what they say. Sorry I am not much help treatment orders are like a trap the harder you fight to get out of them the more they press down on you. And all your rights die along with them.

In response to: Re: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

Hi @Eden1919 well said

Hoping it works out @JoK86

In response to: Re: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

hi @Eden1919 @JoK86

i hope it's okay to write here and apologise - didn't want to hijack a thread that someone else started for themselves -

i just waned to say i really agree although I've not had (much) involuntary treatment

I'm in the opposite boat - i've been begging for support and referrals from my case manager and not getting them - but it can feel really hard and indifferent when you specify what you need and aren't heard on it.


I have also used local legal services and advocacy services and not had much luck with it - the legal services specifically for mental health were so poor and didn't care at all

the best that helped me is having a psychiatrist like you said - a second opinion - someone on your side.


This is hard alone - if you have some good supports to stand with u it can be better.
I am still here after a lot of neglect in the public system, and I guess i attribute that to my Gp - he fights for me. Keep fighting x

In response to: Re: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

Thank you for your response, and I'm sorry that you're under an involuntary order too.

I do appreciate that the medications are negatively affecting him, that's what I'm trying to see what can be done. I guess I just naively believe that the decision to put him on an order all those years ago (when I was young and didn't really have the acumen to help him) wasn't taken lightly, and was made by qualified professionals who know more than I do. And that decisions since to keep him on it were made similarly, by trusted professionals. Haven't really had the knowledge to challenge it until now, when I see that he's going downhill rather than improving.

Thanks so much for your advice. I'll start by seeing how open he is to seeing a second opinion psychiatrist.

In response to: Re: Challenging diagnosis & seeking trial off involuntary treatment

Re: Challenging diagnosis & seeking trial off involuntary treatment

@JoK86 I wish you luck with the other psychiatrist the public system is important but it comes with a host of issues including lack of consistency that leads to people being missed and not properly reviewed. It is possible your father has just had bad luck with drs. And like @EternalFlower said the public system often overlooks people who are desperately seeking help because of stigma and other factors like lack of funding and such. It isn’t perfect but it is what we have at the current time but the private system while much more expensive is also much more humane.

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