The hidden heroes
There is still a lot of stigma attached to schizophrenia. Rob Ramjan hopes that Schizophrenia Awareness Week will help to clear some of the misunderstandings around this hidden and often feared illness.
The people of NSW are urged to salute the amazing carers across the State supporting people with schizophrenia during and after this year’s Schizophrenia Awareness Week.
Schizophrenia is the last big taboo and impacts on the lives of a million Australians.
The stigmatisation of this illness affects both the person with the illness and their family and carers to the detriment, including financial, of the whole of our community. This is a treatable illness and many if not most people with schizophrenia can live rewarding and contributing lives.
However Australia continues to lag behind the rest of the OECD in providing support, funding and services for people with schizophrenia and other mental illnesses. Comparator OECD countries spend between 12 and 16% of their health budget on mental illness. In Australia we spend about 8% and it is dropping, not increasing.
Schizophrenia is a hidden, misunderstood and feared illness across the State.
It is deeply concerning just how much stigma there is around schizophrenia. Too many people think schizophrenia is a hopeless, violent and untreatable illness. Nothing could be further from the truth and this misunderstanding costs us nationally in both financial and human terms.
Carers of a person with schizophrenia are on call 24 hours a day 365 days a year. They tend to be mostly mothers and siblings, although there appears to have been an increase in male carers in recent times. Sadly many carers are also the children of the person with schizophrenia. Please have a look at our Awareness Week video at https://www.youtube.com/user/2011mifa or http://www.mifa.org.au/index.php/news-and-events
This is a real young carer who cares for her mother. It is a story played out across the country every day. Young carers have very special needs and the consequences of not addressing those needs leads to those carers having difficulties themselves later in life. There is an international evidence base which demonstrates the difficulties for these young carers with poorer academic and employment outcomes, higher risks of issues with illicit substances and alcohol, higher rates of mental illness and contact with the criminal justice system. Our award winning ONFIRE program has demonstrated over 13 years that we can change these outcomes for young carers.
An issue which is hard for carers is to declare that they are in fact caring for a person with schizophrenia. The stigma is still so great. Parents also have that unreasonable fear that others will judge them, that somehow it is all their fault. Well, how unreasonable that fear is depends on you, the reader, the person they may disclose this information to.
Will you judge or will you have an open mind? Often the carer is just as isolated and deprived as the person with the illness. If you have an open mind, you may wish to remember the following website where that carer can get advice and assistance: http://www.minetworks.org,au/.
Rob Ramjan AM B.A., B.Soc.Studs is CEO of the Schizophrenia Fellowship of NSW. He has worked in mental health for over 40 years in a variety of roles, both within NSW Health and the NGO sector. He has worked in the Head Office of the NSW Health as well as hospital and community settings. He is a member of the NSW Ministerial Priority Task Force and a Member of the NSW Mental Health Tribunal. Rob was project director for the development of “The Schizophrenias: guidelines for an holistic approach to schizophrenia” (NSW Health 2001) and author of a number of publications. He was made a Member of the Order of Australia in 2007.
steel trap
May 19, 2014 at 3:16 am
Hidden heroes
So glad attention has been brought to the government and community neglect and stigmatisation of people with a schizophrenia, and their carers. A truly HUMAN illness, it affects the old and the young, the rich and the poor, the urban and the rural, and people of every nationality. It is still a misunderstood illness, and subject of myth and ignorance. Despite so many people having a person with schizophrenia in their family, it is still almost a taboo subject—as cancer used to be 20 years ago! People are ashamed and embarrassed, fearful of "exposing" the person with the illness, or of being shunned themselves, so hide the fact. This means many people live without the solidarity of support groups, the true extent of those affected is unknown, and insufficient and inappropriate resources are allocated by health departments to those in need. Researchers have still not found what schizophrenia IS, let alone what causes it, and nor is their an objective test to identify it. No wonder medicines and treatment interventions are so unsophisticated, and can have so many unwanted side effects. Largely because of neglectful interventions, statistics demonstrate that those with schizophrenia have a shorter life expectancy than other Australians—shorter even than that of indigenous Australians. Carers have different types of demands upon them in addition to those experienced by carers of people with other types of disability, but frequently these are not assessable by government agencies, so both those with the illness, and their carers, miss out on government benefits available to those with chronic conditions, and their carers. Schizophrenia is still a medical, research, and political frontier that requires change in community and government commitment to develop greater assistance, better interventions, and greater support for those with schizophrenia and their carers.