Week 6 – Workshop Resources

Case Studies

Sue’s Story

“My story … involves complex family and personal relationships. My story concerns my late husband Peter, my three children, our grand-daughter (Rosie) and myself. Living in remote Australia has a lot of advantages for those of us who like the life. There are also some distinct disadvantages. We have floods, we have bushfires, we have drought. We also have mental illness in our community. Peter experienced a mental illness – and because of the system’s failure to help him – he died of his mental illness.

Peter also had significant physical problems. He had diabetes, which was uncontrolled on occasions, and lead to a foot ulcer and amputation of toes. He also had cardiac problems – and had had a heart attack in the past. There is no doubt that Peter’s physical problems wore him down, but in the end it was his depression, and the inability of our system to help him, which led to his death. In dying, we not only lost a proud man, we lost a home with everything in it. Every physical possession that had meaning to us – lost in the fire. The fire was deliberately lit by Peter. He was found several hours after the fire started. Peter had died by his own hand. He gassed himself while sitting in the family car and never regained consciousness.

Peter and I were married for 16 years. I’d have to say of those 16 years, 15 of them were good to very good, to outstanding. Over the last year of his life things began to change for him. Because of his physical debilitation, he couldn’t do the work around our property, which was so important to him. Peter was no different to many men who live in rural and remote communities. He liked to work, and in fact we were building a mud-brick house. Peter and I put a lot of energy into the mud-brick house, and he received a lot of his gratification as a man, by the work he did on our property. Peter was also a very compassionate man. Since our granddaughter was 16 days old, she has lived with us. Rosie referred to Peter and I as ‘Ma’ and ‘Pa’. There is no doubt that the bonds between us were as strong as if we were the biological parents of Rosie.

Peter was depressed … there’s no question of that. As his physical health began to deteriorate, so did his mental health – and in the last nine months of his life he created barriers. Those barriers were between those he loved, and I believe firmly that he was preparing us for when he was no longer here, to be part of our life. He was pushing me away …. The very person he needed to help him. Towards the end I believed Peter didn’t love me … but at the same time I knew he needed me.

In June of 2000, Peter attempted suicide. He took an overdose of insulin, cut his wrist, and was found in an isolated area, unconscious, with a loaded rifle by his side. He was assessed by the local community health services who found that – under the terms of the Mental Health Act – he wasn’t depressed. Five weeks later Peter completed suicide. The community team chose not to listen to me. I knew Peter – I lived with him, and even though our love had changed … I loved him. I knew something wasn’t right. Even after all the physical problems of the diabetes and the heart attack, which he had had, nobody had ever talked to us about depression. Nobody had told us that depression was a reality for so many people with deteriorating physical health and someone who had just had a heart attack. I tried to talk to the community health services to tell them that I was concerned about Peter, and that he had tried to suicide some 30 years earlier, but they discharged him back into the care of the community – which unfortunately was lacking with respect to his mental health needs. Peter was never assessed by a psychiatrist!

Depression is an illness which I now know is manageable with very good results for people who receive treatment … Depression is an illness which can push people apart. People who would not normally want to have distance between them due to the illness, can have this experience. Peter and I had this experience and it is the cause of great sadness to me that this happened in our relationship due to the illness of depression. Why wasn’t Peter treated for his depression?

We’re told that there are several services all over the country which help people who experience depression. Why weren’t Peter and I given information about depression? Even basic information – so that our lives would have been made so much more meaningful in trying to work together through this situation. I was his carer … I wanted to care for him and I did the best that I could do. However, without proper information and proper support, nobody is able to care for somebody with depression as well as they wish to … and indeed want to. Peter, I believe, became a victim of the system. After his first suicide attempt, the helicopter service wouldn’t airlift him to Traralgon as requested by his general practitioner. Due to the potential risk to aircraft and crew in transporting a psychiatric patient, he was admitted to the closest hospital. Peter was assessed by a Mental Health Care Team who told me that he wasn’t mentally-ill … according to the Mental Health Act. I’m not in any position to argue the legalities of the Mental Health Act. What I know is that Peter is dead and that, as a result of the lack of effective programs, systems, support and medication being offered to him – his chance for recovery was denied him. This is a situation which must stop. Every society will have people who commit suicide … that is a tragic fact of life. However, in order to try and decrease the numbers of people committing suicide, services and education must be available everywhere in urban, rural and remote regions, so that other families won’t experience the tragedy we have, which nearly destroyed us.

In Australia, we talk about having ‘the fair go’. I believe that Peter didn’t receive a ‘fair go’ at all. He deserved to have a proper psychiatric assessment, and to be started on antidepressant medication. We as a family, deserved to have the education to understand what was happening. I don’t for one minute think that we might necessarily have saved his life to the point where he would have had a normal life span, because he had a lot of physical problems which were wearing him down. However, I do believe that with proper care and attention to his mental health problems, he would have had a much better chance of going forward … and for the family to have had more years together. Peter’s life was cut short by depression.

Earlier in this presentation I mentioned Rosie. Some weeks after Peter died, Rosie, who has a developmental disability, asked me if Pa loved her. I said, ‘yes of course Pa loved you’. She then asked, ‘but why did he burn all my things?’ I said, ‘Pa was sick in the brain’ (which is how I described depression to her). Rosie then asked, ‘can the doctors fix you when you’re sick in the brain?’ I said, ‘yes they can’. She thought for a while and then said, ‘why didn’t they fix Pa?’ We have to make services and support available to everybody in this country so that a ‘fair go’ will mean there will be a ‘fair go’ at life for the many Peters … the many Rosies … and the many partners, families and friends around the country who experience depression.”

Mrs Sue Sidebottom, Carer

BlueVoices: a national network of persons whose lives have been affected by depression Extract from presentation at release of report ‘OUT OF HOSPITAL, OUT OF MIND!’ April 2003.

Comments from Community Consultation Sessions

In December 1996, the AHMAC National Mental Health Working Group endorsed the National Standards for Mental Health Services (25) as an essential part of achieving high quality mental health services. Under the Australian Health Care Agreements all States and Territories agreed to full implementation of the National Standards in public sector mental health facilities by 2003.  This report was a review of the progress made in implementing the National Mental Health Strategy. Needless to say, the progress with mental health reform, as documented in the corresponding National Mental Health Report, did not match the “felt reality” of those people who participated in this review (Page 10).

“I want to know where all the money goes. It just seems to disappear. Who’s accountable? Who are they answerable to? Why can’t the system be more accountable so we can get the services we need? We don’t seem to have any say or any control.” Carer (Page 14).

“A reasonable level of funding is being skimmed off by large hospitals and it doesn’t seem to be going into mental health. Accountability of spending is a real issue that needs to be addressed urgently. There is a constant shifting of responsibility between sectors and service providers.” Community respondent (Page 14).

“Consumer and carer participation is a joke! The service that I’m associated with thinks it’s enough to ask us (consumers) to fill in a satisfaction survey every six months. It’s such a humiliating experience.” Consumer (Page 15).

“Carers are never included in the treatment plans. They’re just not consulted. The (doctors) just tell you that nothing is wrong. They tell you what you want and what you need!” Rural and remote consumer representative (Page 15).

“We need a new model of services that has a hospitality (rather than hospital) focus! People should be treated with real courtesy and respect. Care needs to be appraised at the individual (not just system) level.” National professional body (Page 15).

“We just find institutional attitudes in non-institutional settings.” Community representative (Page 15).

“We need individualised care pathways – not a factory model of care.” Ethnic community respondent (Page 15).

“I don’t know where the community would be without services like ours. But we can’t keep going without an increase in funding. We’re doing our best to support people, but it isn’t enough. It seems like the Government expects us to do more and more but with no more money! It’s so hard!” NGO worker (Page 17).

“There’s too much money in the hospitals – most people don’t need to go there. I need to be out there in the community, no matter how hard it is.” Consumer representative (Page 17

“There’s no services in the community and no funding to get quality services. We feel that the community is just becoming one big institution!” Community representative (Page 17).

“At the coalface, we’re supposed to provide a high-quality service on a shoe-string budget!” Non-government service provider (Page 17).

“I do all the caring for my boy. But nobody wants to help me. I’m tired, really tired and there’s no end in sight – no help – nothing! Nobody tells me when he’s being discharged from hospital either. He just turns up on the doorstep and we start all over again. Maybe it’d be better if we could have the asylums back – I don’t know really. Who wants to listen to an old lady anyway – nobody!” Carer (Page 17).

“My son sits alone in a unit with nothing to do, no motivation, no energy and doped up on a tranquiliser. I see other people like my son around where I live, who appear lost and lifeless, who roam aimlessly all day.” Carer (Page 18).

“Psychiatrists won’t take my son if he is not aggressive, yet the next day he is more than aggressive and gets admitted.” Carer (Page 19).

“You’ve got to throw a brick through a window to get admitted – but when you do that you end up being admitted to the wrong service!” Consumer representative (Page 19).

“The system needs a single point of entry. It’s so fragmented. People just get lost. There are too many ‘dead-end’ and ‘no-care’ alternatives out there.” Professional body representative (Page 19).

Reference: Groom, G., A. Hickie, and T. Davenport. (2003). ‘OUT OF HOSPITAL, OUT OF MIND!’ A Report Detailing Mental Health Services in Australia in 2002 and Community Priorities for National Mental Health Policy for 2003-2008. Mental Health Council of Australia, Deakin West. Pages 10 – 19.