Friends, Family & Carers Forum

[Jasminej]

My brother has schizophrenia. I am his secondary carer after my mum. My whole life since my teenage years has been trying to get him help. For some odd reason my mother seems unable to pick up on his symptoms. My father has untreated/undiagnosed mental issues which he will never get treated and makes things very hard to do rationally.when I was younger doctors wouldn't listen to me cos I was too young. Now I'm 34 and it seems to be that bro keeps changing doctors, they don't talk to me or mum and he relapses and doesn't go to psychologist appointments. He's never violent just paranoid and wanders around speaking to self until somehow he is convinced to start meds again. I wonder, how is the mental health system actually supposed to work to support my bro. My parents are aging and I feel I cannot handle much more of this and looking after old people. I'm alone with no support as I have been my whole life. How can we set up a mental health care plan for him... I've heard the term mentioned.. What does it entail? And can I speak to a doctor without them disclosing it? Any advise is appreciated.

[marchhare]

Hi Jasminej, welcome to the Sane forums. It sounds as if you are feeling a bit lost and alone and need advice and support on setting up a plan for your brother. As a carer for your brother perhaps you could you talk to his doctor about setting up a plan. You can also view the below government site about information regarding mental health care plans 

https://www.healthdirect.gov.au/mental-health-care-plan

I am sure other forum members will also have advice for you.

Marchhare

[Jasminej]

Thanks Marchare. Those links were helpful. I will try talk to his doctor but usually he doesnt let my mum(his primary carer into any doc session). Is there any info on the rights of carers? I mean when setting up this plan, surely it asks for a carer? And if someone is listed as a carer they should be contacted? It may also be possible that he says he does not have a carer? Is that a possibility? He also has ocd about germs that I fear is getting acute and my mum seems to be catching some of it. I dont think he tells the doctors these things. In the past when I have tried to talk to his doctor they say they need to disclose it to him. Is there a way I can talk/write a letter to them about what I see in his behaviour and they read it, it's up to them to sus it out more and consider it but they won't tell the patient?? Also is there any way to have a set up such that a patient has a plan but if they don't stick to it, like attend regular meetings, someone comes to house and checks up on them? I'm not sure how long his doc appt are but he can do about 15 minutes of conversation when he has psychosis and sounds completely normal and then he flips to staring into space and various facial expressions etc. I'm wondering if a nurse could visit long enough to see that. What legislation is there around getting someone to be assessed regularly. Often he reschedules appts so that he does not attend them when he is most stressed. So again the doc probably sees him on his better days.

[Former-Member]

Hi @Jasminej
Is your brother in the public system or does he go private?.
In the public system your brother would be allocated a case worker to help oversee his care, they help organise a treatment and relapse prevention plan. It us important that it is noted that he is amenable to you being given information as his secondary carer (might need to pick a good time to do this). Providing he does this you might ask to sit in on a session so that his treatment plan can be explained to you. Sadly case workers can be pressed for time and you might need to be assertive as to what is expected, you need to stress that your parents are aging and are losing the capacity to care for him. You should also be able to see his pdoc either separately or together at the end of one of his appts.
It also pays to understand his medication. The purpose of antipsychotics is to reduce symptoms to enable the patient to function better. Side effects and risk factors need to be monitored, things like checking for diabetes and heart if they are likely affected by his specific meds. Sometimes this is done by the GP, this needs to be in his treatment plan.
Familiarising yourself with your state's mental health act is also a good idea.
In the private system I believe a patient does not have a case worker. I believe due to socioeconomic factors, Sz patients often end up in the public system. I found with my husband that I needed to do a concise history on his symptoms and drugs - reactions.

I will tag you in a couple of posts that might be of help to you.

Darcy

[patientpatient]

Hi @Jasminej. I'm an "older person" with a son who has schizophrenia. He lives with me and I monitor meds and take him to appointments. On his own, he just forgets (and he can't manage bills, payments, locking doors, putting milk away and a whole host of other minor practical things). 

We have a mental health care plan with the GP. The plan just seems to be "administrative" so we can access Medicare payments for 6 or 10 psychologist appointments. I personally haven't seen any other benefits.

"The system" has supported us very well in times of crisis but the day-to-day responsibilities seem to fall to the carers and I don't know what happens if there are no carers. If my son misses an appointment, he will get a call which he may just ignore. I usually give my number when he's making appointments.

You can provide information to the doctor or psychiatrist, for example write an email or a letter. They may not respond because of confidentiality. In our case, I know that the psychs don't always get the full story so I've sometimes had to send information. They do disclose that I've sent information and my son is usually unhappy about that. 

Long-term I've been thinking he'll need supported accommodation. Searching around, I haven't noted anything that looks suitable.

Thanks for asking the questions, I'm also hoping to find some answers.

[GreenT]

@Former-Member could you tag me in those posts too?

[Jasminej]

@Former-Member...thank you so much for that info about the difference between public and private systems. I had no idea about it! I've always thought that private was better because you pay more. Anyways, this time around, my bros new gp has sent him to a public community health place. So I went there and managed to talk to the duty officer. I told him that we don't want any info from discussions between psych and bro, but just wanted to give info about him because we think he may be covering things up and are worried about him and really need to be in on a mental health plan. He said he will keep our visit secret. He said the mental health team meet every morning and discuss the patient. He said they will work with him to get us involved. Also he said that a mental health plan is like 6 visits to a psychologist which is organised by the gp. The community health people do another plan that is a relapse prevention sort of plan(can't remember exactly what it is called) and that's the one he wants us all to be involved in. I think if i had known about the public system being more supportive it probably wouldn't have helped because my bro chooses his doctors. However luckily he's gotten into the public system! I cannot tell you the relief I felt such relief to have someone listen and have someone there who could understand and was supportive! After 20years! There's no telling how things will work out but for now it feels like less mental turmoil for us as carers.

[Former-Member]

@Jasminej
The public system can work well but it is overstretched and as @patientpatient says the carers do a lot of the work ensuring appointments are kept and that regular monitoring of med risk factors happens.
As a carer it is important for you to understand a bit about the medications given. Please do not be afraid to ask questions. The RANZCP have guidelines on the treatment of schizophrenia and these are readily available on the internet as are the national standards for mental health services which includes carers (standard 7) - important though your brother gets you listed as a carer

https://www.google.com.au/url?sa=t&source=web&rct=j&url=https://www.health.gov.au/internet/main/publ...

[patientpatient]

Just to clarify. In our case, my son was on an Early Psychosis Treatment program in the public system. It was limited to age 25 and under, and also limited to two years duration. After two years (and a few months) we were pushed out into the private system.

[Former-Member]

@Jasminej
My husband goes to a public adult community mental health service.