The Beginning of The End

Traditionally in Aboriginal culture, when a child is born, the responsibility for raising that child falls on the whole community. Everyone, rather than just the immediate biological parents, has a shared responsibility. Sharing the load of taking care of one child in turn takes care of the entire community and each individual's own health and wellbeing. This approach is referred to as a holistic approach. Holism can be defined as an emphasis on the importance of the whole and the interdependence of its parts.1

If you were to approach health care for Indigenous Australians in the same way a tribe approaches caring for a child, all of the “parts” of the health care system would need to work together as one, to be most effective. Traditionally in health care, each service works as a solo operation in a bid to better the health of a specific individual. For an individual who has experienced significant trauma that has affected their mental health, it is likely that they would be linked into a number of services, such as a psychology, psychiatry, general practice and supported accommodation. However, when these services do not communicate with one another, the consumer could very well have several different plans of action they have been instructed to follow; and in some cases, the information they have been given from one service may be detrimental to another.

In this essay, I draw on my own experiences as a third party who witnessed how the gaps in health care for Indigenous Australians failed my sister, and explore ways in which this can be prevented in the future.

Part of increasing the quality of life for Aboriginal and Torres Strait Islander people is closing the gap in mental health disparities between them and other Australians. This could be achieved with a holistic approach to health care that encompasses the spiritual, emotional and physical wellbeing of the individual and their community. The impact of colonisation, legislation and the stolen generation has created significant transgenerational trauma for Aboriginal peoples, and as a result, mental health problems are often a road block on the path to being happy and healthy.

Unfortunately, my sister was one of the unlucky Aboriginal Australians who fell through the gaps in the health care system. Jemima was 7 years old when she was forcefully taken from our mother's care and subjected to sexual assault for a period of 6 months. When she was returned to our mother, who was living in a remote town in New South Wales, it seemed that protocol was being adhered to when, after giving a statement to a police officer, she was taken to a larger country town for forensic testing and examination and told to return in 3 months' time for the window period for HIV testing.

When the police asked the doctor who conducted the forensic testing for the results, they were told there were none, and the doctor stated he could not remember the case. Furthermore, when my mother returned to the doctor of the larger country town with my sister for the follow-up appointment, there was no record of the assault or the need for a follow-up appointment.

Jemima was linked into a sexual assault counsellor service, which only visited the remote country town once a month. She was given three sessions with the counsellor. The lack of accessibility to health resources was demonstrated in my sister's case. There were a number of services that failed to communicate with one another and she slipped through the cracks. I believe it was this trauma, the lack of support and the absence of resolution that mapped the path for the rest of my sister's life, where the health care system continued to fail her.

Given that Indigenous Australians represent 3% of the Australian population, and 24% of the Indigenous population lives in remote and very remote areas, it is evident that a large portion of the Indigenous community is not receiving the health care they need and are entitled to.

When most people hear what you have read of Jemima's story, they assume that that was where it would have ended — that that amount of trauma is surely enough for one young girl to have to go through. But, sadly, it was only the beginning. The best way to describe it would be “The Beginning of The End”.

When Jemima was 14 she ran away from home and began misusing drugs and self-harming. At 16, she was diagnosed with schizophrenia. Fifty per cent of patients who have schizophrenia will have had substance misuse problems at some point in time;2 and about 25% of those who misuse drugs will have a concurrent problem with alcohol misuse.3 Unfortunately, Jemima was one of the 25%. Misuse of drugs and alcohol has a wide range of adverse impacts that include suicide, violence and crime. As well as this, substance misuse can increase the severity of symptoms and increase psychosocial problems.3

By the time Jemima was 18, she had been linked into a number of youth support services, such as housing specifically built for youth with mental illness. Throughout her journey she was provided with several similar accommodation services, including, when she became pregnant, housing that was specifically for young mums. Each time, she understood that she was being handed an amazing opportunity to start over and get back on her feet. She approached each optimistically and wanted it to be different from the last. She wanted it to be the time that everything was turned around. However, whenever Jemima was doing well, she stopped taking her medication, as many people with schizophrenia do. They are lulled into a false sense that because they feel well, they will surely be fine without their medication. Unfortunately, not adhering to medication often leads to relapse and hospitalisation.4 In some cases, failure to adhere to medication is because of substance misuse,4 which was most likely true in Jemima's case.

Jemima was not always living with, or often not even close to, her family. Myself, my mum and my two other sisters were all living in different states within Australia, on different journeys and finding answers to our own questions that we had about the land and our culture. Family support can be an incredible influence in aiding the recovery process for people with schizophrenia, as they provide much-needed social and emotional support. These meaningful relationships with family and friends improve the overall functioning of the person suffering with schizophrenia, and their absence can reduce positive outcomes. I believe something that would have provided this support for Jemima in our absence would have been having a professional she could yarn to. Yarning is a process that engages Aboriginal people. Respect, and the ability to learn and eventually teach, are embedded in Aboriginal culture, and this is the foundation of yarning. Yarning involves going on a journey with the client and their family by developing a connection and having them allow you into their history book. Yarning involves not only the individual, but the whole family. The power of yarning is integral to Aboriginal society, as it is culturally safe and it is healing. I often wonder if things would have turned out differently if Jemima had had someone to yarn to.

The last time we saw Jemima was Christmas 2007. She had come down from Sydney to spend the holiday with us, but as soon as she arrived, she scored a hit of heroin, which resulted in an overdose. Little did we know that this was a “practice run” for what would happen less than 1 month later.

After this initial overdose, Jemima returned to Sydney, where she was again admitted to a psych ward. Jemima was more determined than ever to get on the right track this time, for the sake of her child. A plan was devised between two hospitals to ensure Jemima would have the constant care that she required. The first hospital would house her overnight and then she was to be picked up in the morning, to attend a rehab program. However, without any communication between the two hospitals, the evening hospital decided to discharge her. Three days later, Jemima was dead from an accidental overdose. I think of how my sister must have felt; deserted and worthless. I feel sadness for my sister and anger at the care services for their lack of communication and inability to work together.

Today, there is a program called Partners in Recovery (PIR).5 Its aim is to improve the response to and the outcome for people with severe and persistent mental illness who have complex needs. They do this by facilitating the successful coordination of clinical and other support services that deliver care for an individual and their needs.

As a third-year nursing student learning about the PIR program, my heart breaks for my sister, knowing that if this program was in existence when she was alive she would probably still be here with me, her other sisters, her mum and, most importantly, her son.

The program encompasses all of the things that were either lacking or failed my sister. It works to strengthen partnerships between various clinical and support organisations and to improve referral pathways that facilitate access to a range of services and supports, and promotes a community-based recovery model. The PIR program was developed in response to recognising that individuals with severe mental illness have needs that are far too complex for the current systems to meet, with the aim of providing a new level of interagency collaboration that will hopefully be more effective at meeting individuals' needs.

From the age of seven, my sister was let down over and over again by the organisations and services that were supposed to be caring for her. It saddens me that things which come so naturally to people of my culture — a holistic approach, communication and the ability to yarn — were the very things that were absent within her care, resulting in the most tragic end imaginable. I have hope in my heart for Indigenous Australians of the future, knowing that there are programs like PIR in place; and that there are more and more Indigenous nurses in training, like myself, who are fortunate enough to be being educated about them. I have hope, too, that this will prevent more outcomes like that of my dearly missed sister, Jemima.