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Royal Commission into Victoria's Mental Health System

Rose's story*

"I am 79 years old, and dealing with the mental health system is like banging your head against a brick wall.

My son was a successful sportsman, in world cup contention.

One Christmas Eve in the early 90’s, my son was severely bashed, and descended into a deep depression. He was then diagnosed with schizophrenia.

My husband and I tried many avenues to assist him, but it was rarely forthcoming, and we were left to battle on our own. As each year went on, we got more stressed, as we were unable to get the help we needed.

Just writing this makes me feel rather overcome with stress, anger and sadness.

During the early years he added alcohol and drugs to help him cope with his life. He now is very reliant on them.

As his parents, and now as a single carer since 2006, I was rarely listened to or informed what was being decided by the mental health system - the exception being when he was in the Mental Health Service at the hospital psychiatry unit.

Although, it was at this time that the hospital administered electric shock treatment (ECT). We were not consulted over this decision. And, it has been detrimental to his short term memory. It’s been extremely difficult to determine exactly what treatment he’s receiving.

The other challenge has been around the continuity of his care. Too many times medical professionals have asked the wrong questions, or not known how to ask the right questions, and it’s meant that we have found it more difficult to get him the care that he needed.

We have also found considerable challenges in getting my son into decent accommodation. At some times, he’s been discharged into apartments with no services. Often, the properties he was placed in were not appropriate for someone who needs care. At one point, he was discharged to an empty unit with no connected furniture or services, on very short notice. My daughter and I were required to drop everything and do everything necessary to get furniture and services.

I have also found it difficult to get the care that I needed. I have spent a huge amount of time and energy trying to stop myself from having a breakdown. The system has failed me too.

In 2009, my son returned to his home district. Living in a rural area, with minimal support, has been very difficult. The distance from services has created many sleepless nights, and a deep concern for my son’s future.

I have lost count of the times my son was discharged from hospital without talking to me first. When this occurred, he and I would be left in a vulnerable position, and I would be left to pick up the pieces. Often, there would be no follow up from the hospital, apart from an appointment in a fortnight, or a month, with his Community Mental Health worker with no contact in between.

One of the hardest things about being a mental health carer has been the stigma you feel as a result of interactions with the mental health profession.

Some of the comments that have been made to my family and I include:

  • “We don’t look on him as a priority as he has you”. I’ve lost count how many times I have approached the Community Mental Health area with pleas for help from them in finding a way to make my son less dependent on me. They state that they don’t prioritise him, as I’m always there, but statements like this are not helpful to me, or my mental health, and only add to my despair.
  • “Well, you will live in the back of beyond”, when we queried why there was no help available when it was needed. On one occasion during an intense period, after seeing his community mental health worker in the morning, it was decided that he needed to be admitted in the afternoon. It took police and ambulance hours to arrive, despite being 3-5min away. When they finally did arrive, they decided my son wasn’t a priority. The stress this placed on those around my son at this point was immense. We were regularly required to transport him to the hospital while he was in a very florid mental state being aggressive, paranoid and delusional, and the distance was over 100kms.
  • “You will have to ask your son’s permission” was the regular response to concerns around his treatment. The complaint related to the hospital’s decision to discharge my son to a friend who had arrived for a visit without notifying anyone in the family.
  • My attempted complaint led to a meeting with the Carer Consultant in the unit, and it was held in the patients / consumers art room, with the door open, and as it was their space, people just wandered in and out regardless. With no attempt to find a private space, it left me so stressed I spent the next few days crying, as nothing was resolved. Just more roadblocks.
  • The interactions with his community mental health worker feels too transactional. Many, many times, I have pleaded with his Community Mental Health worker to not let my son run the appointment time they have with him, so as to help him to be more understanding and responsible for what is going on in his life, but it’s so much easier for them to just spend 5 minutes with him, give him his injection, and his fortnightly appointment card.
  • The carers allowance is too small, and too difficult to obtain. After many years of applying for a carer’s allowance, it was finally granted to me for a few years. Then he moved out for a while, and although I was still having constant daily contact, I lost the allowance, and since then the support has been very little, or non-existent.
  • For a short while I attended a carer Group run by Wellways. It was very nice to feel validated as a carer, even for that short while. However, it was defunded, when the NDIS came in.
  • Visits to the Emergency Departments can be extremely distressing. Often, you wait for hours in a room packed full of people, while your loved one becomes increasingly more agitated, paranoid, and anxious - only to be sent home with a Panadol.
  • If on his own in the Emergency Department, my son would often be given a ticket at 5.30AM when the trams started up, and told to go to his worker at 9AM, leaving us to organise his mental state, and a visit to his caseworker, often ending up in him being admitted into the unit.
  • Other times, the doctor would deem him well enough to go home, leaving me to be completely responsible for his paranoia and aggression, placing me in a vulnerable situation

My life has literally been in a state of depression so much, that at times it would be easier to simply not be on earth. This is not an option, but sounds easier than constantly dealing with my lot.

The amount of times I have asked for help and been rejected would leave anyone in despair.

I am totally and utterly at the end of my tether so at 79 my fervent hope is that someone is ultimately going to listen to me, and others like me.

Writing it down doesn’t do it justice."

 

* Names and places have been changed to protect individuals.

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While we welcome you to share your story with us, we are not able to provide clinical advice, referrals or support. If you or someone you know require assistance or need to talk to someone please call Lifeline on 13 11 14.