|Year : 2015 | Volume
| Issue : 2 | Page : 122-130
Indian Psychiatric Society-South Zone: Innovations and challenges in providing psychiatric services to disadvantaged populations: A pilgrim's progress
Department of Psychiatry, Dr. B R Ambedkar Medical College, Kadugondanahalli, Bengaluru, Karnataka, India
|Date of Web Publication||22-Apr-2015|
Dr. G Swaminath
Consultant Psychiatrist, "Smruthi", 675, 11 A Main, 45 Cross, 3rd Block, Rajajinagar, Bangalore - 560 010, Karnataka
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Swaminath G. Indian Psychiatric Society-South Zone: Innovations and challenges in providing psychiatric services to disadvantaged populations: A pilgrim's progress. Indian J Psychol Med 2015;37:122-30
|How to cite this URL:|
Swaminath G. Indian Psychiatric Society-South Zone: Innovations and challenges in providing psychiatric services to disadvantaged populations: A pilgrim's progress. Indian J Psychol Med [serial online] 2015 [cited 2019 Aug 25];37:122-30. Available from: http://www.ijpm.info/text.asp?2015/37/2/122/155607
Delivered at the 47 th Annual Conference of the Indian Psychiatric Society - South Zone, Bangalore - 2014
So long as the millions live in hunger and ignorance, I hold every man a traitor who, having been educated at their expense, pays not the least heed to them. - Swami Vivekananda
It is with immense gratitude and not without some pride that I stand before all of you (some of you have been my teachers and mentors) to deliver the presidential address of the Indian Psychiatric Society, South Zone, for the year 2014-15. I thank all of you who have had the faith to elevate me to this exalted position.
It is customary to deliver the presidential address on a topic of academic interest or personal passion. Today I would like to take this opportunity to take you through my voyage of working with disadvantaged populations, and trying to overcome the challenges faced. This has been a sojourn of almost two decades and a major part of my professional life and I think it is time to share the joys and sorrows of my journey with professional colleagues. Many professional colleagues and friends have been co-travelers in this voyage and have assisted me on the way. While it would be almost impossible to name all, I start off with a humble heartfelt 'THANK YOU' to them, indeed very many of you right here, for being my source of guidance and strength at various junctures in this wonderful journey.
| An Awakening of Sorts|| |
My first contact with the Swami Vivekananda Youth Movement (SVYM) at Heggadadevanakote started in 1995 December, when Dr. R Balasubramaniam, Founder President took us around the various campuses spread over a 20 km radius and made us familiar with the activities of this organization. The SVYM was started in 1984 by a group of young doctors, just after their medical college, who settled in one of the most impoverished talukas that is Heggadadevanakote (HDKote), Mysore District, which has a large forest area and is part of the Nagarahole forest range and Niligiri bioreserve.
The inundation of the forest after the construction of the Kabini dam as well as cordoning of the forest for preservation as a National park and the improper rehabilitation left the tribals helpless. They were denied their right to livelihood, ancestral place, food habits, customs and the moving into rural areas from the forest affected their ways of retaining their culture and tradition values. SVYM took the cause of these twice displaced as well as dispossessed tribals and assisted them in their felt needs of health, education and community development.
Before I go further I would like to brief all of you about the health initiatives by the organisation. The first two years I worked in Hosahalli, a tribal haadi in the middle of the forest, and later at Kenchanahalli, a village on the outskirts of the forest, as more people could access psychiatric help. SVYM had a primary care centre here, earlier called Shankara Community care centre, with 10 beds which drew patients from nearby villages and the forest. However in 1998 the psychiatric camp shifted to Sargur, a commercial town in the backward taluk of HDKote where the 90 bed Vivekananda Memorial Hospital (VMH), had been built. VMH offers multi-specialty secondary care at an affordable cost to the rural and tribal populace and draws its clients from all over Mysore district. It is affiliated to the Rajiv Gandhi University of Health Sciences (RGUHS), Bangalore and offers the India's first post-graduate fellowship course in HIV medicine for medical and dental professionals.
The Community based services related to health are provided by SVYM through the outreach program called ROHINI (Rural oriented health initiative) and a network of grassroot level health workers called health facilitators. Their HIV control programmes, that offers comprehensive, inclusive and end-to-end care, is rated as one of the best in the country and has been hailed as a best-practice model by UNAIDS. SVYM's key focus areas have been-tribal and rural health, ayurveda (the Indian system of medicine), reproductive and child health, hygiene and sanitation, care and control of HIV/AIDS, tuberculosis and blindness.
| 'Buy One, Take One Free'|| |
I was so impressed with the work done by this young group of committed individuals and haltingly offered to join them in a small way. Along with my friend, Dr. Deepak Haldipur, an accomplished ENT surgeon we began a monthly ENT and mental health camp on every 2 nd Sunday from February 1996. The doctors warmly welcomed the ENT camp, but were skeptical of the need for a mental health camp. They opined that the tribals and rural poor were not subjected to the trials and tribulations of those in urban areas. The issues they suffered from were loss of livelihood, poverty, malnutrition, changing social and cultural norms, absence of adequate bonding among the tribals to effectively speak out for their rights, and this resulted in their suffering and these required solutions in community development rather than individual management. In their decade of experience in HDKote they had seen hardly any persons with mental illness and were hence not sure of how I would add value to their organisation. However they probably felt the psychiatrist was along with the ENT group like a 'buy one get one free offer' and resignedly accepted the package. I am happy that the mental health camp has continued every 2 nd Sunday without fail all these 18 + years. The only time there was a gap was for 2 consecutive months was in 2002, when during the Kaveri riots the road to HD Kote from Mysore was blocked by rioters. Since then I have been praying for bountiful rains in the Kabini (which is a tributary of the Kaveri), area and smooth release of waters to Tamil Nadu, as even an unrelated event like this could be an obstacle for proper running of the mental health camp.
My first patient had complex partial seizures and behavioural problems including staring spells followed by a period of uncontrollable anger which was mistaken to be due to stress. I saw a few psychotics too. My first non psychotic patient was a man who suffered episodes of panic along with generalized anxiety along with nightmares, extreme fear, and became house bound unable to continue his livelihood in the forest for the past few months. This had been precipitated following rescue of a screaming fellow tribal who had been gored by an elephant. This example clarified to the doctors that while the form of illness for is the same whether in tribal, rural or urban areas, but the content of the illness and the cause may be different. In the urban area a similar illness could arise due to seeing an automobile accident with nightmares of automobiles. With the gradual breaking down of the strong belief that persons living in the forest and rural areas were immune to psychiatric disorder, in contrast to those in urban areas, more patients were identified and referred.
One of the initial challenges was the distance of 200 km from Bangalore to HD Kote, as well as the travel within the forest. The road was in shambles in 1996 and would take 4 hrs to reach Mysore (135 km) and further 3 hours to reach our destination (65 km). Over time the roads have improved reducing the time taken to 4 to 4 ½ hours one way by cab, made enjoyable thanks to the company of friends.
| Gaining Acceptance|| |
What started as purely outpatient, later included inpatients after the start of the Vivekananda Memorial Hospital, Sargur. The clientele too increased as the hospital was easily accessible. But for some colour added to the presentation of illness by local beliefs and customs, the illnesses were similar to those seen elsewhere. Referrals were mainly from improved patients, village elders, as well as self help groups and other NGOs who are quite active in this area. Later even local healers, very popular themselves, started to refer those who they identified as having mental illness. Improvement in the number of patients attending the OP suggested an attitude change towards seeking help. There were some referrals from hospitals in Mysore as well as NIMHANS informing patients that psychiatric assistance was now available locally.
The health facilitatior is the key person in the community based services ROHINI. He interacts with both the doctors as well as the specialists regarding the health issues of the people living in each gram panchayat (population of 8000), earlier personally through landlines, and now through mobile. His role is in active surveillance to identify persons with health problems. He joins health teams comprising doctors and nurses which in an ambulance well equipped to treat and manage minor illness pans out and visit every village and haadi once every fortnight. During these visits in addition to managing minor physical ailments, psychiatric illness are identified and referred to our camp every 2 nd Sunday. In case there are more number of patients or there is a severely ill person who cannot come by other transport, the community worker transports them in an ambulance. The community based programme monitors the patients regularly of taking medication as well as follow-up.
The resident doctors of VM H through assisting me in the monthly camps honed their diagnostic and therapeutic skills. The health facilitator contacts these doctors when there are cases with acute psychosis, severe depression, post partum illness, attempted suicide, panic and dissociative disorders and other emergencies. An ambulance team is sent to the haadi or village where there is an emergency. After examination the doctor in the ambulance directly contacts me and reports his findings and carries out the management plan suggested. Later there is follow-up in the monthly psychiatric camp where a more formal examination, diagnosis and a detailed management strategy is planned. The health facilitator who is from the same community is helps in communication with the relatives and community members.
Now the advent of mobile communication has made emergency management more immediate, as mobiles can reach the deep forest too. Sometimes the health facilitator directly contacts me, so that the doctor in the ambulance has a probable diagnosis.
I had deferred the use of medications such as Clozapine and Lithium which require regular monitoring, as facilities for estimation for Lithium was nonexistent even in Mysore. However, for the past few years VMH has a tie up with a laboratory in Bangalore wherein we send the serum for Lithium estimation by post and get back the report by fax. That serum samples containing Lithium remain stable for at least 8 days following collection has been shown by Sudhir Khandelwal in the IJP (1981). While TC/DC is done at VMH, patients were reluctant to travel long distances only for Lithium estimation. This was circumvented by trained health facilitators who collect samples and add EDTA to the sample vial and transport it to the hospital within a few hours. Thus health facilitators have been useful in both Lithium and Clozapine monitoring, and reports are ready when the patient arrives for follow-up.
| Facing the Modern Plague: HIV/AIDS|| |
VMH offers comprehensive, inclusive and end-to-end care and control of patients with HIV/AIDS from all over the state, and is a great learning opportunity. Persons with HIV/AIDS develop emotional problems such as severe distress, anxiety and depression which follows stress, or develop cognitive disorders, psychosis and delirium due to its effect on brain functioning. Substance abuse, too, is very common.
Counseling of patients with HIV/AIDS is similar to that which is useful in patients with chronic illnesses as well as facing the possibility of death, by first acceptance of the patient, reducing guilt, and concentration on assisting a search for meaning in relationships, work, and activities. There is a need to increase his skills and strengths in overcoming negative emotions and instill positive ones.
Among drugs used for HIV AIDS, Effavirenz though useful can cause neuropsychiatric adverse effects, as well as interact with antidepressants. While treating patients with antidepressants, caution to recognise a switch to mania, which usually presents with irritability rather than euphoria. While newer antipsychotics are chosen, patients have a high sensitivity and can develop EPS and neuroleptic malignant syndrome and require a lower dose. Sometimes patients on antiretroviral drugs develop syndromes suggestive of organic psychosis, which require antipsychotics.
| Alcohol: Then and Now|| |
In 1996, liquor as we know it was not available freely and not consumed heavily in the tribal areas of HD Kote. The tribals had their own brews which were sanctioned for certain important occasions. Drinking was never a taboo and both men and women consume this alcohol. SVYM did its bit by ensuring that neither government arrack shops nor liquor shops were opened in these areas. This has changed over the past 10 years. Increased earnings due to MNREGA programmes as well as work in plantations of Coorg and Kerala coupled with an absence of a culture of saving for a rainy day, has led to increase in alcohol consumption and draining of their earnings.
For the last few years, backed by funding from the Social Welfare Department, 7-day camps for alcohol dependent persons with a package of detoxification and counseling were conducted. This programme however did not produce good long term results, as the treated went back to the same village where others who still consumed ensured that they went back to drinking.
However in the past year better follow-up with the assistance of the health facilitator has improved the rates of abstinence through increased motivation, handling sleep disturbance and of mild depressive features.
| The Young Ones|| |
SVYM has a tribal school with 1 st generation learners. It is, however, rare for a child to complete 10 th standard; drop outs start at 8 th standard. The grown up boys pride themselves in working in neighbouring plantations of Coorg and Kerala during holidays and earning. The girls get married. The respect the community gives to these earning individuals lures the next generation. Even a short stint at work makes it difficult for the adolescent to readjust to the disciplining of school. The predominant tribals, the Jenukurubas are extremely sensitive to even mild criticism, and do not tolerate reprimand.
Handling problem adolescents in this school required innovative strategies. After training teachers in identification of problem behaviour as well as handling them, they were each attached to one problem student. With constant personal supervision and positive reinforcement gradual change in the problem behavior is usually noticed. During my monthly visits the progress is discussed and solutions to any remaining problems suggested. The success of this is now being replicated in the other school which is situated in Sargur.
In recent times during the mental health camps, health facilitators and nurses are involved in individual and group pre and post consultation counseling for each patient. The group sessions involve educating patients and the community on issues related to mental health, as well as assisting patients and carers in understanding the nature of the illness, the need for regular medication as well as management of behavioral problems related to the illness. Such hospital based support groups has helped bonding and better follow-ups and reduced stigma.
Increasing mental health awareness in the community has been one component of the programme. Celebrating the mental health day as well as informal interaction with teachers, foresters, hospital staff and patients and educating them about mental illness and its prevention has been a regular feature. There have been street plays on mental illness to create awareness. The use of community radio 'Janadwani' for sensitizing the community as well as reminding them about follow-ups has helped in engaging the community.
Over these years I have seen about 4089 patients: Male-1887, Female-2199 from 150 mental health camps between April 2002 to September 2014. The psychiatric department sees the maximum patients on any one day (during the camp) of the month for the past many years. Majority of patients suffer from Major Depression (20%), Panic Disorder and Epilepsy 5%, and Bipolar Disorder, Schizophrenia, Generalised anxiety Disorder, Somatoform Disorder around 3-4 %.
This sustained effort at working in the community has given me many positive moments. It is gratifying to see a chronically ill person disabled and nonfunctional due to symptoms, improving and regaining functionality as well as respect and dignity in the family and village. The flip side is that a team with other mental health professionals could have benefitted the patients more, especially those with co-morbid physical and intellectual disability. One grandmother of a severely mentally handicapped girl with behavioral problems commented that my visit all the way from Bangalore was a waste. She was frustrated as instead of treating her granddaughter and curing her, a poor prognosis was provided along with advice to her on the behavioural management of the patient. Having no support from her family or the villagers, who constantly chided her for the patient's behavior her hopes of complete recovery and normalcy were dashed. Seeing her bring the patient for the next visit brought about in me mixed feelings of satisfaction and hopelessness.
| A New Challenge: The Homeless|| |
Five years ago a new chapter opened in the mental health scene of Karnataka when my professional colleagues and friends, Dr. Ravishankar Rao and Dr. Murali Tyloth and their friend Mr. Johney (who manages a facility for homeless persons with mental illness (HPMI), Jyothinivas, in Waynad, Kerala) came with a proposal to start a facility to house and rehabilitate homeless persons with mental illness in HDKote.
My first brush with the homeless occurred more than 15 years back when I used to visit the Nirashruta Parihahara Kendra (Beggars' Colony) in Bangalore. While these visits did not last long, I realized something about myself which caused guilt. While examining the new admissions I found it difficult to control my revulsion and would find myself itchy in their presence. It disturbed me that I could feel this way in the presence of a fellow human being. The present opportunity at Chittadhama has helped me overcome this frailty.
Before I go further, I would like to discuss briefly the issues related to HPMI. Mother Teresa said, 'To be nobody to anybody is the greatest disease'. The homeless person is denied all rights given by society of being fed, clothed, provided shelter, care when sick, and provided assistance when helpless. HPMI, suffer from violations of their rights such as confidentiality, privacy, safety, religion and health. They are forced to endure the indignity of inhuman treatment.
The World Health Organisation (WHO) states 'All people with mental disorders have the right to receive high quality treatment and care delivered through responsive health care services. They should be protected against any form of inhuman treatment and discrimination' (WHO 2001). This is not followed either in letter or spirit with HPMI.
HPMI beg, roam, starve and take refuge in beggars' homes, helpless in providing for themselves. They are subject to physical, verbal and sexual assaults and suffer the vagaries of the weather. HPMI either remain on the on the streets, or end up in prisons, beggar homes and a 'lucky' few are incarcerated in the wards of mental hospital life long as they have no home to go to. The first three never get adequate treatment.
| Redressing Society's Blind Eye|| |
There are provisions in Section 70 of the Mental Health Act (MHA) 1987 for the humane treatment of HPMI. However certain stringent requirements of the MHA itself contribute to difficulties in its implementation. The HPMI on the street simply have no one to take them to a hospital or a doctor. The police are also handicapped if a mentally ill person is picked up at night, as no magistrate is available and no hospital can take them in without a reception order.
HPMI represent the end point of a life of suffering and loss as well as the reflection of a failure of the family and society to care for such individuals. Institutional care is the first step to facilitate recovery of homeless persons with mental illness. Their families are the key and an indispensable resource for reintegration. Their ability to accept and support such persons obviously depends upon the manageability of these individuals at home and availability of support for continuation of mental health care in the local area.
It is estimated that there are about 10-15 thousand homeless persons with mental illness in Karnataka. While most of them are in urban areas which offer them anonymity, rural and tribal areas are a dumping ground for HPMI. There are no provisions in the DMHP, nor are there facilities for rehabilitation for the care of the homeless persons with mental illness.
| Chittadhama: The Refuge for the Derelict|| |
With contributions from a team which included mental health professionals and others interested in the care of HPMI, the Chittaprakasha Charitable Trust was registered. With the funds from the trustees a 4 ½ acre plot with 80 coconut trees adjacent to the backwaters of the Heballa dam was bought. This trust would run a residential and rehabilitation facility for HPMI. The trust after registration however spent more than a year in planning various options for generating income to start the facility, but to no avail. Month after month, during our regular 2 nd Sunday visits, we would visit our property, and strategize on trying to fulfill our dream.
Our luck turned when we found a visionary donor who recognized the strength and value of our idea and magnanimously granted funds to construct the entire building of 7500 sq ft building at a very substantial cost. This was the practical beginning of Chittadhama, the residential rehabilitation centre for homeless persons with mental illness. On August 20th 2010, the Chairman of the Infosys foundation, our donor, Ms. Sudha Murty handed over the keys of the building to few of us who went to meet her-handing the keys to each one in turn - symbolizing that the responsibility of the enormous task at hand had to be shared. Thus our dream had finally consolidated into reality through the hard work and goodwill of many.
However, this reality turned out to be just half of the battle. There were many unique challenges to starting such a facility in a rural area as well as in the state of Karnataka, due to certain regulatory issues.
Land regulatory issues
The 4 ½ acre land was acquired could not be registered in the name of the trust, as Trusts as well as non agriculturists cannot hold agricultural land in the State as per the Land Reforms Act. We have bought the land in the name of a trustee who was an agriculturist, but still are unable to transfer it to the trust. To house the building Chittadhama 20 guntas or 1/2 acre was 'donated' to the trust, which was 'converted' to non agricultural land after taking permission from local and District authorities and paying a huge conversion fee. The rest of the 4 acre land is still not transferred to the trust after 5 years of existence and we still are trying to find a way out.
Equipping ourselves and licensing
Our initial plan was to start low and go slow and learn on the go by constructing the required building in stages, expanding as and when needed. However, due the benevolent offer of Infosys foundation, we now had a readymade building with infrastructure ready to house 50 residents. Equipping this building with physical facilities such as cots, beds, sheets, clothing, kitchen equipment, dining tables, chairs, serving utensils, facilities for entertainment as well as medical equipment and facilities for consultation had to be in place before acquiring a license under the MHA 1987. We required having adequate staff such as a manager, a nurse, caregivers and kitchen staff and an agriculture expert to assist in agro based rehabilitation. Thus this readymade building turned out to be a strain for us to equip fully to get the regulatory permissions. Despite having had all the requirements the inspection took a long time as we were 60 km away from Mysore; the permission as given to us only 4 months later during which we were left with a fully equipped place but unable to accept patients.
Staff recruitment and training
Chittadhama has a problem of getting adequate staff particularly caregivers and especially women. Despite our conscious decision to recruit from the local community we have not got many to work for us. The positive note here is that those who have joined have not left us. It is generally thought that the payment scales for people in rural areas are less than urban areas. This is not true, especially with MREGA as the minimal wages in HDKote now is Rs. 200/- per day and people prefer to work doing manual labour rather than as a caregiver, especially as ours is a demanding and round-the-clock job. Stigma plays a role here which we are still to go a long way in overcoming. One of our caregivers while extremely hard working, refused to cut the hair of the residents, a regular need. We have learnt to accept this as otherwise he is a dependable caregiver. We have learnt to integrate local beliefs, social customs and taboos into our working to be able to work harmoniously in the community.
Liaison with public functionaries and the local community
Thanks to the sensitisation of the community and officials over our 5 years of operation, the Judicial Magistrate (JM), police and other officials are now 'Friends of Chittadhama'. The JM initially opined that there was a conflict of interest in the psychiatrist at Chittadhama both certifying mental illness and then taking care of the patient Hence JM sent all HPMI to be first screened by K R Hospital, Mysore for severe psychiatric illness before issuing a reception order. It was only after a visit to our facility during the mental health day programme that the JM became more cooperative. However, the first screening by K R Hospital has worked well for Chittadhama as our residents have a detailed psychiatric and medical assessment along with the advice for investigations and treatment, before they enter our facility.
The police too, who were initially suspicious, now work well with our volunteers both in rescue and reintegration and have been extremely helpful and proactive. Their assistance during times of crisis such as death or escape of a resident is memorable.
The local government officials, Zilla parishat and Panchayat members have been very cooperative and participated in most functions of Chittadhama. They keep assisting us in provision of essential needs of road and electricity, even working to reduce taxes by recognizing our work.
NGOs from HDKote and beyond have adopted us and have been contributing small requirements for the facility, and quite a few spend time with our residents frequently.
The public has been donating cereals and fruits and many spend time with our residents, celebrating their happy days with us, many times sponsoring meals. Our Christian residents pray in the church, and our Muslim residents are taken to the mosque on Ramzan and other festivals by local friends. We are lucky to have community participation and most of this is due to our proactive and genial project manager Mr. Mahadevaswamy and the other members of the team.
The grim reaper
The two deaths at Chittadhama highlight our involvement with the local community. Just last year, when the rain god seemed truant, the local people wanted to exhume the remains of one of residents who died, as they believed that a if a person with vitiligo is buried there will be famine, and the solution was to exhume and cremate. Reluctantly we kept postponing the decision for almost two weeks citing requirement of permission of the Judicial Magistrate. The rain god smiled and it rained heavily and all was forgotten.
One young, member of a minority community died of tuberculosis. He had actually been a great help and was the caregiver to those who would be admitted to other hospitals for treatment. More than 200 people of his community gathered and made all arrangements to bury him at their place, making their own arrangements.
Our 4 'R's
Chittadhama has an electrified fence all around, as it is elephant land, which is energised at night. Despite the electrified fence, we have had an elephant menace which moved through our fields further, destroying the fence. Luckily there was no injury.
The residents of Chittadhama work in the fields and some take the cattle for grazing, sometimes outside the facility, but come back in time for other regular activities of Chittadhama. Over time most residents do what they are instructed to, and some choose their own work. There have been attempts to escape thrice since our inception. One had actually reached his home, and the other was brought back by the neighbouring community. Most residents feel secure here, but with each reintegration of a resident in his/her family our other residents start asking to be sent back home, especially after seeing the warmth of reunited families.
At Chittadhama we have not three but four 'R's: Rescue, Restitution, Rehabilitation and Reintegration.
Challenges at rescue
On receipt of information that there is a HPMI wandering in the vicinity, along with the police, a volunteer of Chittadhama, with skill and sensitivity, approaches the person. They convince the person of their credibility, he/she is then presented, with the help of the police, before a Judicial Magistrate who after a report from the psychiatrist at KR Hospital, Mysore issues a reception order to place the homeless person at Chittadhama.
While some of the HPMI come silently to the vehicle to transport them, some become fearful and restless, and occasionally violent. Their responses include shouting screaming, throwing food, biting and assaults. The patients dirty themselves by passing urine and stools in their clothes to cause revulsion in others. Our staff, now trained in handling all of these, proactively provide biscuits, tea and sometimes bidis, and also ensure their ablution to avoid problems.
The response of the public to the rescue range from confusion, anger, loathing directed towards our staff and volunteers, and protectiveness towards the HPMI (at times with the mistaken belief that we will extract kidneys from them), and have to be convinced of our bona fides and professionalism.
Challenges at restitution
While few residents immediately adjust to the surroundings and routine of Chittadhama, others take varied time intervals to get adjusted. During this time they resist getting cleaned and groomed, becoming aggressive. Sometimes residents scream with fear at the sight of water They wet or soil their clothes, refuse food or take it to a corner to eat. Whether this reflects intrapsychic issues or protest is not known. In fact one lady resident who used to pass stools while eating, and refused to do chores at Chittadhama, on reintegration with her family started to work at home and never repeated the obnoxious behaviour there.
Some residents adhere to a routine such as enter through the same door, getting cleaned by the same care giver, eat and sleep at the same place, not wish to change clothes: an insistence on sameness. Getting some residents to get used to using the commode or a squatting toilet and cleaning themselves is testing for caregivers.
The daily routine in Chittadhama begins with a brief discussion among caregivers with reiteration of remaining calm and patient. Caregivers reach out to others who are feeling strained by the behavior of their wards.
Some residents used to smoking, try to sneak out of the campus and get a puff through the goodwill of passersby. Sometimes beedies are smuggled in. Keeping an eye on them and preventing them from escaping from the campus helps wean them off. Some just roll a leaf and puff, when they are not noticed but this too fades out.
Despite all our precautions we have had three residents escape, as I mentioned, from Chittadhama. There are 3 cases booked against our caretakers in this regard. Our caretakers are now wiser, and if any of the inmates seems extra bright or active, they are assigned extra work, given more attention and pains taken to fulfill their needs.
There is an in-house rehabilitation procedure, with a rural orientation. Depending on the individuals interest, skills and abilities, they are introduced to the various programmes at Chittadhama like farming, cattle rearing, cooking, house keeping and helping in the care of other residents. Most of them show significant improvement in 6-8 weeks and are able reveal their address, though in a piecemeal fashion. The lack of skill and knowledge about rural and agricultural practices are the challenges faced here.
Every reintegration to family justifies the existence of Chittadhama. Our search for the family begins from our very first interview, by trying to get the address of the residents home as early as possible. This is a time consuming, laborious work and identification of the family is a work of deduction and we need the smartness of Sherlock Holmes. The help of police, personal contacts, postal services, e-mail, yahoo groups, well wishers, local practitioners and such are taken to help locate addresses.
Most residents being both illiterate and ignorant of geography are not able to give a clear address, or even the state of origin. Their varying accents, use of short cuts and local names, identification of hometown becomes more difficult. Our first reintegration was through the active intervention of Dr. Ram Sharan Srivastava, Psychiatrist from Ghorakpur, my contemporary at NIMHANS. We sent him details of name, father's name, brother's name, Pahaddiya village and post, Banda district, UP with a general merchant shop with owner's name near his house. Though Banda district was very far, Ram used his contacts but could not proceed as he did not know the caste of our resident. As this was information we had not taken, we needed to recheck Mr. S's caste. Ram clarified that the village was Pahadi in Banda, and we soon got a call from an uncle of the resident who immediately spoke to the resident personally, confirmed that our resident was his nephew, and within 2 days arrived to take him back. We similarly reintegrated another resident through the good offices of Ram Srivastava we were able to identify the family in 48 hours, with the mother herself coming to take him back. Having given him up for being lost she was grateful to get back her son after 5 years.
Once a resident said he was from Madhya Pradesh and we were searching the map of that region, to no avail. However some volunteers while talking to him realized that his town had a railway station. On enquiry of the stations prior and beyond and mapping it on the railway map, we realized the town was actually in Maharashtra bordering MP. With the information that his grandfather was a priest in a Hanuman temple, we were able to zero in on the family.
In the case of another resident, we sent our caregivers along with him to identify his family and they went on a wild goose chase to the neighbouring towns of Renigunta and Tirupathi but returned without identifying the family.
Recently we have taken the assistance of the Shanthivanam, an NGO in Trichy involved in care of HPMI to reintegrate two of our residents.
Reintegration is an emotionally charged event for both the caregivers and the families and range from happiness and acceptance, to resigned acceptance, to rejection.
We are grateful for the assistance of various 'friends of Chittadhama' who have helped in getting the details, addresses, and searching the families.
As on date the number of homeless persons with mental illness admitted to Chittadhama has been 62 (M:43 F:19), and we now have 27 residents (16 male and 11 female). Of these 30 have been reintegrated to their families (M:23 F:7). The reintegration has been 6 to TN, 3 to Kerala, 17 to Karnataka and 4 to UP/Madhya Pradesh. Three residents have absconded. This process of rehabilitation has given us lot of satisfaction. We are proud to say that we have been able to reach our residents as far as Uttar Pradesh, Bihar, Maharashtra, Tamil Nadu and to other parts of Karnataka. We have seen mixed responses at the reintegration- from utter delight at reunion with a loved one to outright rejection.
This experiment to develop a cost effective rehabilitation programme for homeless people with mental illness, in the state of Karnataka, is a unique venture. The sustainability of a programme such as this would also depend on public participation. Hence public awareness programmes are incorporated into the project. Finally, we trust that the core issues involved in stigma of mental illness associated with homelessness, which acts as a barrier for these persons to enter the mainstream of life, would be addressed.
| Chitttasanjeevini: Manomalige|| |
Access to psychiatric medication is one of the main problems experienced in running of psychiatric camps in the rural and tribal areas. Patients have to travel long distances to procure the medicines prescribed at the camps. Most NGOs running free psychiatric camps get erratic supplies from government. Nor is the cost of psychiatric medication easy to bear.
While the DMHP, the Government of Karnataka and the Health Department have a scheme on paper to distribute drugs to those who seek psychiatric assistance, they are still unable to do so on a regular basis, and this is true all over Karnataka. Our neighbouring states have made provision for free medication to such organisations through the District Mental Health Programme.
This need is now being fulfilled due to a generous offer by Infosys foundation, which is donating a corpus of Rs. 2 crore, the interest of which is to be utilised for provision of medicines for persons with mental illness identified and being treated at rural and tribal medical camps throughout the State of Karnataka. In order to operationalise this vision, Chitta Sanjeevini Charitable Trust CSCT was registered on August 7 th 2014. In essence CSCT is to work as a mother NGO to ensure that NGOs which run psychiatric camps in rural and tribal areas are to be provided with the required psychiatric medications as well as ensure that these reach the desired beneficiary that is the patient.
The challenges of the new trust include:
- Reducing administrative expenses - doing away with superfluous manpower.
- Having an excellent Information technology backbone, to integrate the pharmaceutical vendors, the recipient NGOs, and CSCT- the mother NGO, both in terms of drugs and finances.
- Identifying credible NGOs with a psychiatrist running the mental health camps.
- Ensuring that medications reach just in time for NGOs to provide medicines to their beneficiaries in their mental health camps and reporting the utilisation of the medicines.
- Once a year monitoring of the programme and usage of medications and beneficiaries.
- Data Communication between NGOs through latest technologies - e-mail, messaging and Whatsapp.
As I deliver this lecture CSCT has received the corpus and will be launched shortly. The path this programme takes will be shared with all of you at an appropriate time.
| Lessons Learnt in Responsibility|| |
Friends, the etymology of the word PSYCHIATRY means 'healing or caring for the soul (psych + iatry). so the role and responsibility of a psychiatrist goes beyond consultations and prescriptions in the doctor's office. into schools, homes and communities for the purposes of preventive, promotive and therapeutic care. My opinion is that just as we expect corporates to indulge in Corporate Social responsibility, Clinicians too should embrace clinicians' social responsibility (CSR). This is the essence of the mental health activities I have undertaken in addition to what I do for my bread and butter.
Friends, this has been a long journey but a very rewarding one. This could not have been possible but for continued support and encouragement of my family, professional colleagues, staff and doctors of the various institutions involved and of course the love showered by my patients. I thank all of them for this wonderful opportunity, and all of you for helping me share it.
| Suggested Readings|| |
- Swami Vivekananda Youth Movement. Available from: http://www.svym.org/ [Last accessed on 2014 Oct 11].
- Swami Vivekananda Youth Movement. Available from: http://en.wikipedia.org/wiki/Swami_Vivekananda_Youth_Movement [Last accessed on 2014 Oct 11].
- Khandelwal SK, Khare CB, Raghavan KS, Murthy RS. Stability of serum lithium levels-usefulness and relevance in Indian conditions. Indian J Psychiatry 1981;23:251-3.
- Let's Talk Facts About Psychiatric Dimensions of HIV and AIDS. Available from: http://www.psychiatry.org/ [Last accessed on 2014 Oct 11].
- The World health report: Mental health: New understanding, new hope, 2001.
- Mental Health Act 1987. Gazette of India (Extra), Part II, Section 1, dated 22 May, 1987.
- National Mental Health Programme. 1982 document. Available from: http://pbhealth.gov.in/pdf/mentalhealth.pdf on [Last accessed on 2014 Oct 11].
- Office of the Chief Commissioner for Persons with Disabilities. Ministry of Social Justice and Empowerment, Govt. of India. The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.
- Karnataka State Mental Health Rules; 2007.
- Government of India circular No. F. No. V. 15016/14/2006-PH, Government of India, Ministry of Health and Family Welfare, dated 9 th Sept, 2008.
- Sheth HC. Deinstitutionalization or disowning responsibility. Int J Psychosoc Rehabil 2009;13:11-20.
- Nieto G, Gittelman M, Abad A. Homeless mentally Ill persons: A bibliography review. Int J Psychosoc Rehabil 2008;12.
- Dinakaran D. Streets to shelter in Chennai, India. Psychiatr Serv 2006;57:884.