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Where is the schizophrenia carer support??

Grace78Casual Contributor07 July 2026, 4:11 pm AEST

Where is the schizophrenia carer support??

I started the schizophrenia carer rollercoaster 15 months ago when my 19 year old son was diagnosed. I won't give the horror story of attempting to access private psychiatric care, eventual referral to NSW community team, inpatient stays and now back to community care, no private services will accept a referral locally. There is no way to overstate the impact this has had on our family. I don't recognise my child anymore, but can't grieve their loss because I'm so busy fighting to try to secure psychiatric medical care, NDIS, allied health, manage a new workforce of support workers and turn myself inside out on a daily basis to try to improve things in their life, just a little. This is in the context of supporting my daughter complete the HSC and balancing a demanding career. I've recently relented an taken one day/week carer's leave, but this hasn't even touched the sides. Now I just have less time to do my job and am burning through my sick leave.

My question is this: where are all the people like me? I've searched and searched through all the available services. OneDoor - there is a local office, couldn't connect me with any support group, or even individual. Carer Peer Support through my local health service - made soothing noises, suggested I get EMDR, couldn't connect me with any support group or individual in similar circumstances. Wayahead, SANE, Carer Gateway, Headspace: ditto. Not so much as an online support group. I've explored overseas options. Suppose I could go this way but the time difference is a killer and I really want to share experiences with someone navigating the same systems as me (the most traumatic part of this whole disaster).

If the statistics are right and 1% of the population has schizophrenia, why is there no organised carer support group or service I can access? There must be many, many other families in my community [edited by moderator] who are going through the same thing.

Sorry it turned into a vent. Seems I'm now at the getting angry phase. *sigh* It's going to be a long, long road to travel by myself.

Seriously though, am I missing something? I'd be thrilled to be corrected.

6 replies

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In response to: Where is the schizophrenia carer support??

BunniekinsSenior Contributor07 July 2026, 5:55 pm AEST

Re: Where is the schizophrenia carer support??

@Grace78 they are out there. i have two in my area but honestly you might have to start your own. you are definitely not alone. just remember from someone who has been there look after you. if you dont you will suffer and it is a long way to come back from.

In response to: Where is the schizophrenia carer support??

EternalFlowerSenior Contributor07 July 2026, 5:59 pm AEST

Re: Where is the schizophrenia carer support??

@Grace78 not sure if applicable, but these are free and in my state have been life saving for some of the ppl i've met - https://supportgroup.mhfa.org.au/hearing-voices-support-group

"hearing voices support groups"

https://www.nsw.gov.au/community-services/carer-support - also might this be relevant?

i think for some private can be the way to go - i know its very prohibitive, but some ppl do end up trying to pay for private health care to access private hospitals (although you said they wouldn't help there?)

Is there a way to find out aboout a reputable private psychiatrist who can treat the disorder in your area, i think that can make a big difference with mental health, having a psychaitrist to get input.

Re emdr, def recommend making sure its with skilled clinicians, i think its fairly easy to become an emdr specialist, so you'd also want someone good. I know its so overwhelming, but its not impossible x

In response to: Where is the schizophrenia carer support??

D4DolphinModerator07 July 2026, 7:51 pm AEST

Re: Where is the schizophrenia carer support??

Thank you for sharing the challenges you are experiencing here, @Grace78. Yes, it may be a long road - and so you are doing just the right thing in seeking support. Please consider SANE's RecoveryClub, if you haven't already. You might find the suggestions from @EternalFlower helpful. And depending on where you are, there may be support that works for you through Tandem's Carer Support Groups in Victoria - or another service elsewhere in Australia that belongs to Mental Health Carer's Australia (Home).

Stay safe.

In response to: Where is the schizophrenia carer support??

Grace78Casual Contributor10 July 2026, 8:04 am AEST

Re: Where is the schizophrenia carer support??

Thanks @Bunniekins. I've been thinking I might need to start one, but I honestly don't have the wherewithal. I've let my own relationships with friends and family lapse - I just don't seem to have the time or emotional energy. It's also difficult when they can't possibly have an inkling of what this is like.

Have decided to start tending to my own well-being a bit. Am realising now that this is a long haul.

In response to: Where is the schizophrenia carer support??

Grace78Casual Contributor10 July 2026, 2:59 pm AEST

Re: Where is the schizophrenia carer support??

@D4Dolphin, Ihave to admit that I hadn't even considered the SANE Recovery Club for carers. Think I'd looked at Recovery Club early on and knew that he wasn't ready. Goes to show that I may have to keep circling back around to spaces/organisations as out situation changes over time. Ditto my local OneDoor support group. I'd dismissed it at first because it was during business hours and I was working full time. Now I'm not, so I can check it out.

In response to: Where is the schizophrenia carer support??

Loving_partnerCasual Contributor16 July 2026, 12:06 pm AEST

Re: Where is the schizophrenia carer support??

If you’re located in QLD, I’ve found Arafmi to be very helpful. They have a 24/7 support line you can call and they have in person and online support groups and can organise one on one coaching which they are currently trying to do for me.

Heres a link: https://arafmi.com.au/carer-family-support/

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