Schizophrenia Destigmatized - SCARF an NGO Shows the Way Forward

Mental health issues generally pose a daunting challenge to patients, their families, carers, mental health professionals and society at large. Of all mental aberrations, Schizophrenia is most intimidating because it robs the affected person of his or her productive years in life and the sooner the condition is identified and treated the easier it will be for the person to recover and return to normal life. Schizophrenia does not discriminate between race, sex, age, color or creed and affects the population universally. It generally presents after adolescence and only rarely affects children. Its frequency is however more in men than in women. Schizophrenia affects approximately 1% (or 1 in 100) of the world population. The numbers in India are unknown as we have no data, however in the United States there are over 2 million people suffering from the condition.

Hungarian psychiatrist and Professor Emeritus at State University of New York Health Science Center in Syracuse described this condition very briefly saying – “If you talk to God, you are praying. If God talks to you, you have schizophrenia.”

Scientists have often felt that that the term ‘Schizophrenia’ should be abolished as the label stigmatized these sufferers as being violent, dangerous and untreatable.

Medindia interviewed Dr. R.Thara, MD, Ph.D, Director of SCARF (Schizophrenia Research Foundation), the only WHO Collaborating Center in India for Mental Health Research and Training. SCARF makes available a broad spectrum of interventions in different settings including day care, outpatient, community and in patient residential centers. Dr. Thara has published many scholarly papers on mental health and is known for her use of simple and clear language to enlighten laypeople on mental health issues particularly Schizophrenia.

Q. Please tell us something about SCARF for our readers’ benefit?

SCARF is a not-for-profit, non- governmental organization started with modest beginnings in 1984 in Chennai by philanthropists and mental health professionals led by Dr. Sarada Menon. This is our silver jubilee year. SCARF was started with the main objectives of delivering low cost, comprehensive care including rehabilitation for persons suffering from schizophrenia. SCARF is equally active and well known in research and academics, training and teaching, building awareness and lobbying for mental health awareness. It is also a specialized center for psycho social rehabilitation, which means employing various techniques to reduce disability, improve the functioning of these persons and help them join the mainstream in society.

Schizophrenia affects persons in their most productive years 18 to 35. Hence, in many countries it is called the “Greatest Disabler of Youth”. Very bright and highly qualified young men and women can develop the disorder thwarting their ambitions and goals in life. We therefore target school and college students in our awareness programmes so that they can detect early the symptoms of schizophrenia in themselves or in their peers. Early detection and regular treatment are key to recovery and improvement.

Q. Considering that Schizophrenia affects people in their most productive years, how does SCARF organize their rehabilitation after treatment?

Rehabilitation is the process by which the disabilities in a person are reduced so that he /she is able to regain some of the lost skills and integrate themselves with society. In the case of schizophrenia, the disability may be poor social skills, difficulty in communication and forming relationships and doing everyday tasks. So, training is provided either singly or in groups to help these people regain the skills. Psychological methods such as behaviour modification and cognitive training are also used.

The most important aspect of rehab programmes in India is work. Since we do not have any social security benefits for the mentally ill, it becomes essential for them to resume work soon. So, we have sheltered workshops where they are asked to work for a few hours everyday. This inculcates in them a work habit and a discipline which helps when they take up outside jobs. More people in the industry should come forward to give jobs for such persons, many of them being quite skilled. Holding a job also raises their self esteem and helps in the recovery process.

Q. India being a conservative society, how does SCARF de-stigmatize the issue of mental disorders? Can you tell us some tested strategies that SCARF can vouch for in creating awareness on mental health issues?

Stigma is one of the greatest barriers to seeking treatment and this delay leads to the condition becoming gradually more severe reducing the chances of complete recovery. Stigma also impairs social adjustment and acceptance by the community. SCARF is the Indian coordinating center for the anti stigma program of the World Psychiatric Association. The SCARF-WPA anti stigma program was launched in 2004 by the President of India then, Dr. Abdul Kalam. SCARF has used multiple strategies to deal with the stigma—using all forms of media such as print, radio, TV etc, traditional methods like folklore in rural areas and even a skit in Tamil enacted by improved patients of SCARF.

For the last three years, we have been conducting a film festival “Frame of Mind” in which national and international films on the subject of mental health were screened over a 3 day period for the general public, followed by discussions with professionals. This was a unique experience since many patients and family members disclosed the fact of mental illness openly and discussed issues of concern. There is also a competition of short films based on a theme announced by us. The first three winners get cash awards. The next festival will be in October 2010.( www.frameofmind.in)

Apart from the popular Hollywood movie Beautiful Mind which had a worldwide audience, there are some good Indian Films on schizophrenia namely, 15 Park Avenue (English language Indian film), Woh Lamhe in Hindi, Devrai, Ratra Arambh in Marathi and Kudaikul Mazhai in Tamil and the recently released Pathaam Nilayile Theevandi in Malayalam, to name a few. Many films however use mental retardation and mental illness interchangeably and this increases the confusion in people’s minds. Traditional stigma attached to mental disorders can be aggravated if scientifically sound messages are distorted by the media. Film media can be more careful, perhaps use the Censor Board, to check erroneous messages related to mental disorders conveyed to the public.

Q. Do some antipsychotic drugs hinder recovery as believed widely?

In schizophrenia, there are structural and biochemical changes in the brain. So, medicines are required to set this right. This is how anti psychotics work by correcting the chemical imbalance in the brain. Some of them can cause side effects like drowsiness, dryness of mouth, weight gain and menstrual irregularities. But used in right dosages, these drugs are an absolute requirement for persons with schizophrenia.

As is commonly believed, schizophrenics are not violent all the time. In fact, I think in India, normal people are more violent than persons with schizophrenia. Schizophrenics tend to keep aloof and shun social contact. Very rarely do they get violent.

Contrary to popular belief, persons with schizophrenia do improve and lead normal lives. We have had many persons in SCARF who after treatment and rehabilitation have been able to hold jobs, get married, and lead productive lives. This often depends on how early they seek treatment, and the kind of family and environmental support they have. Families who are often not informed about this disorder also undergo a lot of hardships and some of them feel stigmatized themselves.

Q. SCARF being the only one-of-its-kind institution in India, how do you reach out to help people in different parts of India and abroad? Can you name some Supports Groups you work with?

SCARF has been running a lot of community outreach programmes in urban and rural areas in India. We have pioneered the use of Telemedicine to reach out to areas where formal mental health services are not available.

Also, there are some family groups in India— the one in Chennai is ASHA. SCARF has been working closely with them right from the beginning. It will be good for the cause of mental illness if such support groups can lobby with government in a unified way.

Q. Can you highlight some Research and Training programs that are an integral part of SCARF?

The fourth International Conference on Schizophrenia (IConS IV) hosted by SCARF is scheduled for October 22-24, 2010 on the theme "Schizophrenia & Related Disorders: Advances, Updates and Reviews." (http://www.icons-scarf.org/)

IConS conducted every alternate year since 2004 has had about 400 international delegates and is ranked among the best scientific conferences world over.

SCARF has presented more than 150 research papers published in peer reviewed journals. Students from mental health and allied disciplines are regularly trained at SCARF.

Q. Please share with our readers the proudest moment in your work so far?

One of the most significant milestones in my work over the last thirty years has been the development of a tool to measure disability caused by mental illness. IDEAS (Indian Disability Evaluation and Assessment Scale) is used nationwide and has been gazetted by the Ministry of Social Justice & Empowerment, Govt of India as the official tool to measure disability.

Q. Your vision for treatment of mental disorders in India?

My desire is that no Indian, wherever he or she lives, rich or poor should be denied treatment and help for mental disorders. Those severely disabled by schizophrenia should receive some disability benefits which will be a boon to them and their families. I would also like a national anti stigma campaign to be launched by government along with NGOs and the media to reduce the stigma of mental illnesses so that more people seek treatment and do it early. I also hope that soon, research will find a definite cause for schizophrenia, so that it can be prevented.

Q. How can Medindia help SCARF’s mission?

Medindia can provide useful and correct information on schizophrenia, its signs and symptoms, treatment available etc. It can also provide a directory of rehabilitation centers in the country. It can build a network of patients, family members and professionals who can discuss some relevant issues and plan how to impact national and state level policies. It can also have a forum or panel in which some FAQ’s can be answered.

“You have powers you never dreamed of. You can do things you never thought you could do. There are no limitations in what you can do except the limitations of your own mind.” Darwin P. Kingsley

Medindia wishes Dr. Thara and SCARF more breakthroughs in exploring new approaches to care and rehabilitation of the mentally ill. Medindia assures its continued support to SCARF in the field of mental health, particularly schizophrenia.

Source-Medindia
Thilaka Ravi/S