1 00:00:14,400 --> 00:00:24,300 Greetings from Vellore. My thanks to Dr Prem Lao Webster for the invitation to participate in this conference. 2 00:00:24,300 --> 00:00:34,350 As my contribution to the deliberations, I wish to tell the stories of encounters with patients in the community and highlight the 3 00:00:34,350 --> 00:00:41,610 differences between working in the hospital as as contrasted to working in the community. 4 00:00:41,610 --> 00:00:51,840 I think all of us will agree that we have adequately quantified the many shortcomings of mental health services in India. 5 00:00:51,840 --> 00:01:03,780 However, I believe numbers do not fully describe the depth and nature of the unaddressed need that is consequent to the lack of access to treatment. 6 00:01:03,780 --> 00:01:15,990 I draw my population from the patients I have seen and treated within the psychiatry department of the Christian Medical College, 7 00:01:15,990 --> 00:01:26,850 as well as those I have seen in liaison with NGOs, the Christian Medical College, Vellore 120 year old institution. 8 00:01:26,850 --> 00:01:31,020 The psychiatric hospital was established approximately 60 years ago. 9 00:01:31,020 --> 00:01:43,890 From 2008 to 2017, I was responsible for establishing and running psychiatric rehabilitation services. 10 00:01:43,890 --> 00:01:51,780 The patients recruited for this unit were necessarily from the local area so that they could attend every day. 11 00:01:51,780 --> 00:01:58,020 We ran to or this week and saw approximately 100 patients. 12 00:01:58,020 --> 00:02:04,440 We also had a day care facility where patients who required training either in the 13 00:02:04,440 --> 00:02:12,150 activities of daily living or in a vocational training could come and be catered to. 14 00:02:12,150 --> 00:02:19,770 We quickly realised that in order to increase access and affordability to mental health services, 15 00:02:19,770 --> 00:02:25,320 we should provide consultation at the various community centres, 16 00:02:25,320 --> 00:02:33,270 which is part of Christian Medical College, both situated both in urban and rural areas. 17 00:02:33,270 --> 00:02:38,970 The other part of our work involved liaising with NGOs who worked locally. 18 00:02:38,970 --> 00:02:50,730 One of these is Hoodlum or Angle, and the founder, Mr Chandrasekaran actually challenged us very early on in our work in rehabilitation. 19 00:02:50,730 --> 00:02:58,410 He said instead of going down the same wards every day, we should join him in rounds on the street. 20 00:02:58,410 --> 00:03:07,410 And this is precisely what we did. And that is when we were introduced to a whole universe of patients in psychiatric disease, 21 00:03:07,410 --> 00:03:12,660 which would never have been accessible at the main hospital. 22 00:03:12,660 --> 00:03:18,420 Mr Chandrasekaran also inspired a young couple, Mr Ramesh and Mrs. Prema, 23 00:03:18,420 --> 00:03:27,660 who established a home for the rehabilitation of homeless or rather the title is wandering mentally ill. 24 00:03:27,660 --> 00:03:37,500 This was funded and licenced by the government, and they had just finished undergraduate courses in commerce and in computer applications. 25 00:03:37,500 --> 00:03:46,350 So with no training in psychology or psychiatry, except the two days of exposure to the working of the Banyan. 26 00:03:46,350 --> 00:03:58,260 This couple, this remarkable couple, is looking after approximately 70 patients, 70 residents who were rescued from off the streets. 27 00:03:58,260 --> 00:04:05,880 We also extended our consultation service to the Missionaries of Charity Home on the outskirts of Vellore. 28 00:04:05,880 --> 00:04:13,410 I wish to tell these stories of the patients of the people and they tell a story. 29 00:04:13,410 --> 00:04:15,240 Mr V, for example, 30 00:04:15,240 --> 00:04:24,900 wandered in the streets of the capital for six or seven years before he was rescued by Ramesh and Prima and admitted to the home in their. 31 00:04:24,900 --> 00:04:34,350 He responded very well to a minimal dose of antipsychotics, and of course, compliance was ensured by the staff of the home. 32 00:04:34,350 --> 00:04:40,830 Here he displays proudly the money he has saved after selling his handicrafts. 33 00:04:40,830 --> 00:04:50,910 However, even though the disease subsided, he never quite accepted the reality that he could not be supported by his family. 34 00:04:50,910 --> 00:05:01,440 He had a widowed mother who was a psychiatrically ill herself and a younger brother who could barely earn enough money to keep body and soul together. 35 00:05:01,440 --> 00:05:12,350 Mr B repeatedly asked us to go to his family and finally, when we did allow him to go, sending medicines along with him within. 36 00:05:12,350 --> 00:05:20,150 Year he returned to the original state in which he was picked up initially. 37 00:05:20,150 --> 00:05:30,620 And this actually opened my eyes to the fact that a lot about caring for people involves maintaining a 38 00:05:30,620 --> 00:05:39,440 delicate balance between establishing our treatment regimens and removing signs of psychiatric disease, 39 00:05:39,440 --> 00:05:47,390 as well as maintaining a certain level of autonomy and allowing for patient preference. 40 00:05:47,390 --> 00:05:50,900 The next person I would like to talk about is Mr. R, 41 00:05:50,900 --> 00:06:02,270 who was standing for over six or seven months at the corner of a busy street, a street junction near the college. 42 00:06:02,270 --> 00:06:07,820 He remained immobile, spoke to no one and seemed preoccupied. 43 00:06:07,820 --> 00:06:11,690 He was clearly passing urine and motion into his clothes. 44 00:06:11,690 --> 00:06:18,170 He accepted no food from anybody, except from a particular fruit vendor who used to give him bananas. 45 00:06:18,170 --> 00:06:22,250 Mr. John mentioned Prima rescued him and took him to the home, 46 00:06:22,250 --> 00:06:28,430 and when they were helping him to clean up, they discovered he was wearing 76 pieces of clothing. 47 00:06:28,430 --> 00:06:36,020 This was layer upon layer of obviously clothing that people had donated and he had not removed. 48 00:06:36,020 --> 00:06:45,710 He also responded within a year. He started speaking in Hindi and could not recall an address, 49 00:06:45,710 --> 00:06:53,600 but remembered that the name of the college in which he was studying before he left home. 50 00:06:53,600 --> 00:06:57,020 This is the same person at a picnic, 51 00:06:57,020 --> 00:07:03,590 and that is when we discovered that he knew how to swim and he told us there was a river near his home on the net. 52 00:07:03,590 --> 00:07:12,680 The college was located in Allahabad and long story short, through a mission hospital in Allahabad. 53 00:07:12,680 --> 00:07:24,440 We located his family and they came and picked him up, and he is back in Allahabad on treatment and continuing to live a normal life. 54 00:07:24,440 --> 00:07:27,830 Mr. R was missing from home for four years. 55 00:07:27,830 --> 00:07:39,740 He had absolutely no recall how he got from his home to the game and remembered very little of the three years he spent in the home as well. 56 00:07:39,740 --> 00:07:50,180 It was really enlightening to see what chronically a chronic mental illness which was left untreated could reduce a human being, too. 57 00:07:50,180 --> 00:07:54,980 This is the standard way of rescuing patients. 58 00:07:54,980 --> 00:08:03,920 What usually happens is the local people inform Ramesh Prima that there is a new entrant in their neighbourhood and remission. 59 00:08:03,920 --> 00:08:10,910 Prima will just go and offer food and shelter, and very often the person will just accompany them to the home. 60 00:08:10,910 --> 00:08:18,560 This lady was rescued. Similarly, she was also barely speaking in monosyllables. 61 00:08:18,560 --> 00:08:23,150 She was not speaking a language that could be understood by any of us. 62 00:08:23,150 --> 00:08:28,130 However, she settled into the home after she was registered with the police. 63 00:08:28,130 --> 00:08:39,920 Unfortunately, she did not seem to be doing very well physically, and despite repeated physical examinations by a psychiatrist, we detected nothing. 64 00:08:39,920 --> 00:08:44,900 A local physician took a chest X-ray and found a mediastinal mass, 65 00:08:44,900 --> 00:08:56,930 and MRI of the brain revealed numerous nodular and ring shaped lesions in the hope that it process may be tuberculous in pathology. 66 00:08:56,930 --> 00:09:02,310 An open biopsy was done by the Neurosurgery Department of Christian Medical College. 67 00:09:02,310 --> 00:09:09,300 However, the biopsy proved she was suffering from a malignancy in the absence of any family. 68 00:09:09,300 --> 00:09:18,950 She was taken to back to the home and cared for, nursed faithfully until she passed away in her sleep two months later. 69 00:09:18,950 --> 00:09:23,720 This is not an outcome that we would desire or find adequate. 70 00:09:23,720 --> 00:09:33,410 However, the importance of care sometimes overriding treatment is, I think, demonstrated by this story. 71 00:09:33,410 --> 00:09:42,320 This lady spent most of her adult life tied by a rope around her waist, which was tethered to a stake in the ground. 72 00:09:42,320 --> 00:09:49,460 Her elderly parents were unable to bring her even to the Christian Medical College, which was just a few kilometres away. 73 00:09:49,460 --> 00:09:54,140 When we first discovered this lady in the community, 74 00:09:54,140 --> 00:10:03,740 the parents refused to allow us to shift her to a home or to give her depo antipsychotics, which would have ensured compliance. 75 00:10:03,740 --> 00:10:12,200 So we had to settle for regular visits and taking medicines for the parents who were diabetic and hypertensive. 76 00:10:12,200 --> 00:10:21,800 And putting this lady on a small dose of risperidone, which was put into her food so that she did not know she was taking medicines. 77 00:10:21,800 --> 00:10:29,510 Yes, this is against most rules and regulations, but this is sometimes what we have to do. 78 00:10:29,510 --> 00:10:40,640 As expected with people in the community with chronic mental illness, she succumb to a physical illness within six years of follow up. 79 00:10:40,640 --> 00:10:47,060 So we should actually debate whether we contributed anything at all to her care. 80 00:10:47,060 --> 00:10:53,540 In my opinion, supporting the parents in looking after her was a very important role. 81 00:10:53,540 --> 00:10:58,370 This lady was brought in chains because there was no other way her brother could bring her. 82 00:10:58,370 --> 00:11:07,550 She was non-cooperative. She is one of the many people who would never have made it to the main psychiatry hospital. 83 00:11:07,550 --> 00:11:21,890 This young man was being treated in our outpatient services for a psychosis, rather florid psychosis in the middle of an exacerbation. 84 00:11:21,890 --> 00:11:26,240 He climbed a transformer and touched a live wire. 85 00:11:26,240 --> 00:11:33,290 Luckily, was thrown to the ground, but sustained burns across both upper limbs and across his chest. 86 00:11:33,290 --> 00:11:43,820 He was taken by his widowed mother to the government hospital, which within three days realised they could not manage the problems he had. 87 00:11:43,820 --> 00:11:49,400 We broke every rule in the book and got him admitted in the psychiatry wards, 88 00:11:49,400 --> 00:11:59,780 got the infectious diseases experts and the plastic surgeons to guide us on the management of infections and burns, and he made a rapid recovery. 89 00:11:59,780 --> 00:12:07,550 Physically, he even underwent a skin graft on the right index finger, which had touched the live wire. 90 00:12:07,550 --> 00:12:10,370 However, in spite of the physical recovery, 91 00:12:10,370 --> 00:12:22,430 he continued to suffer from resistant psychosis and his mother's struggles to this day to manage him in their little house in a village. 92 00:12:22,430 --> 00:12:30,470 There is no home that will take on the long term care of people like this man who sorely need the help. 93 00:12:30,470 --> 00:12:40,730 This is another instructive episode. This lady was found in the middle of an acute psychotic, agitated state, 94 00:12:40,730 --> 00:12:47,990 jumping up and down and going raucously in a outskirts of Vellore in a village on the outskirts of Vellore. 95 00:12:47,990 --> 00:12:55,250 Recognising her foreignness status. The local villagers bundled her into an ambulance and sent her to velocity. 96 00:12:55,250 --> 00:13:02,210 And where did the ambulance take her not to the government hospital or even to the Christian Medical College? 97 00:13:02,210 --> 00:13:10,010 They brought her to Mr Chandrasekaran, the founder of The Woman London, because they knew that he would help them. 98 00:13:10,010 --> 00:13:14,270 Mr Chandrasekaran, of course, brought us into the picture, 99 00:13:14,270 --> 00:13:20,270 and he managed to recruit the help of women constables to accompany the patient 100 00:13:20,270 --> 00:13:24,650 while she was in our wards because we don't admit anybody without relatives. 101 00:13:24,650 --> 00:13:30,140 He even managed to hold a foreign student from a nearby college to translate, 102 00:13:30,140 --> 00:13:38,840 and we found out through his conversations with her that she came from the Democratic Republic of Congo. 103 00:13:38,840 --> 00:13:45,920 She had come to India to buy cotton T-shirts, which she was going to take back to the Congo and sell for a profit. 104 00:13:45,920 --> 00:13:53,900 She had stopped taking her anticonvulsants and therefore had become subject to her epileptic psychosis. 105 00:13:53,900 --> 00:14:03,800 So the psychosis settled fairly quickly after we restarted the anticonvulsants, but it was left to Mr Chandrasekhar to contact the family. 106 00:14:03,800 --> 00:14:06,950 Get them to buy another ticket. 107 00:14:06,950 --> 00:14:19,400 Contact the embassy in Delhi and transport her with a police escort to the embassy and put her on the flight back to the Congo. 108 00:14:19,400 --> 00:14:25,670 Mr Chandrasekaran, by the way, has no position of power and he is a college dropout. 109 00:14:25,670 --> 00:14:32,450 The one thing that drives him is the overpowering impulse to help people in need. 110 00:14:32,450 --> 00:14:38,870 This lady suffers from a psychiatric problem, but her needs went way beyond that. 111 00:14:38,870 --> 00:14:43,730 She has an alcoholic husband who has mild intellectual compromise. 112 00:14:43,730 --> 00:14:53,130 She has delivered for girls, the last of whom is laid out two days after her birth in a corner of her slum. 113 00:14:53,130 --> 00:15:02,210 None of the children are immunised. They don't have birth certificates, and we had to get all this before they could even be admitted into a school. 114 00:15:02,210 --> 00:15:07,670 We had to work with this couple to get their consent for a two back to me. 115 00:15:07,670 --> 00:15:12,310 So the psychiatric treatment was a small part of the whole endeavour. 116 00:15:12,310 --> 00:15:17,290 She is currently working as a manual labour and earning an income for the family. 117 00:15:17,290 --> 00:15:22,030 This lady lived for about 20 years under a tree on the side of the road. 118 00:15:22,030 --> 00:15:32,290 The shopkeeper, whose shop was adjacent to her living place, adopted her as a blessing from God. 119 00:15:32,290 --> 00:15:37,780 She used to clean this pavement in front of his shop and keep intruders away, 120 00:15:37,780 --> 00:15:45,970 and in return he would keep her supplied with what she wanted, which of these notebooks and a box in which to keep these notebooks. 121 00:15:45,970 --> 00:15:58,000 She would scribble in tight, illegible handwriting, and she had about 30 or 40 of these notebooks collected by the time we got to meet her. 122 00:15:58,000 --> 00:16:05,440 She told us she was keeping accounts for the government treasury, and when we offered to shift her to a home, 123 00:16:05,440 --> 00:16:12,430 she said the country will be in a huge mess if she gives up her role in accounting. 124 00:16:12,430 --> 00:16:19,000 She suffered from a schizophrenia and would periodically stand on the side of the road and shout into the air. 125 00:16:19,000 --> 00:16:26,920 She would had paranoid delusions, but she was able to cook food for herself with the leaves that fell from the tree. 126 00:16:26,920 --> 00:16:32,530 She was kept, provided and stocked. Her provisions were stopped by the shop owner. 127 00:16:32,530 --> 00:16:39,790 She was given a sari when the shop owner Son got married and about seven or eight years after 128 00:16:39,790 --> 00:16:46,780 we first came across her when she became frail and was found unconscious on the ground. 129 00:16:46,780 --> 00:16:55,780 Then the shop owner gave us permission to shift her to the to the missionaries of Charity Home in Bochum, where she was. 130 00:16:55,780 --> 00:17:04,630 She was looked after for a couple of months, after which she passed away peacefully, surrounded by people and well looked after. 131 00:17:04,630 --> 00:17:12,040 So we were unable to treat her. We had no home to shift her to if we had given her forced medications on her. 132 00:17:12,040 --> 00:17:16,960 We may have taken away the delusions that kept her going all those years. 133 00:17:16,960 --> 00:17:27,220 So this is yet another way to provide care and walk beside a sufferer instead of overpowering the person and forcing medical treatment on them. 134 00:17:27,220 --> 00:17:35,500 We came across many others who were eating from the garbage bins and drinking from the sewers. 135 00:17:35,500 --> 00:17:43,810 We came across frail, elderly relatives who were the only people who represented family for our patients. 136 00:17:43,810 --> 00:17:55,120 Patients came from houses like these, which were clearly, you know, indicated a fragmented society and deep poverty. 137 00:17:55,120 --> 00:18:00,340 This is one of the more well-to-do areas from which our patients came. 138 00:18:00,340 --> 00:18:08,500 This is an example of how a family was forced to look after their daughter, who suffered from psychosis and had set fire to herself. 139 00:18:08,500 --> 00:18:17,410 They could not take her to the psychiatric hospital in public transport because she would disrobe and she would be a disturbance to everybody. 140 00:18:17,410 --> 00:18:25,420 All they could do was partition their hut and put sand on the ground so that even if she set fire to herself, the fire wouldn't take. 141 00:18:25,420 --> 00:18:32,140 The father died of complications of alcoholism. The mother died of a tumour in the lung, 142 00:18:32,140 --> 00:18:43,780 and this young girl was transferred again to a home where she was looked after and continues and continued to live there for another two three years. 143 00:18:43,780 --> 00:18:48,970 She was found dead in her sleep after two three years of being admitted. 144 00:18:48,970 --> 00:18:54,250 So there are ways in which the community is looking after their own. 145 00:18:54,250 --> 00:18:59,380 There are ways in which passers by reach out to people in need. 146 00:18:59,380 --> 00:19:04,120 This young gentleman on the right had bought some food, 147 00:19:04,120 --> 00:19:14,830 had opened up the packet and was sitting in front of this young boy who was clearly homeless and psychiatrically unwell and living in a bus shelter. 148 00:19:14,830 --> 00:19:22,540 When we asked this man why he was doing what he was doing, he said that when he just gave this boy food, 149 00:19:22,540 --> 00:19:30,070 which he obviously was in need of, stray dogs would come and eat the food before the boy could feed himself. 150 00:19:30,070 --> 00:19:40,150 And therefore he took to waiting till the boy had fed himself, giving him water and then going on his way to velocity to sell tea leaves. 151 00:19:40,150 --> 00:19:49,360 These are the ways in which the communities instinctively reaching out to those in need, which we were never privileged to witness. 152 00:19:49,360 --> 00:20:00,910 As long as we sat in our office rooms, the other one longer and the home rescued people fed and sheltered them, kept them clean, 153 00:20:00,910 --> 00:20:12,150 involve them in gardening activities and in handicraft, making trees their families and return them to their homes if wherever. 154 00:20:12,150 --> 00:20:22,530 All we needed to do as professionals was to consult, diagnose, prescribe and the rest was done by this NGO. 155 00:20:22,530 --> 00:20:27,060 And I firmly believe that they run their home even better. 156 00:20:27,060 --> 00:20:31,140 Then we run our psychiatric ward, said CMC. 157 00:20:31,140 --> 00:20:38,910 We were able to take medicines to the homes of patients and provide even depo injections at their doorstep. 158 00:20:38,910 --> 00:20:44,700 We were often unable to offer any treatment except to bear witness. 159 00:20:44,700 --> 00:20:51,390 And this is the funeral of one of one such young girl who committed suicide. 160 00:20:51,390 --> 00:21:01,200 We were really not able to help, although we tried very hard, but we were able to join the family in their grief and for whatever it is worth. 161 00:21:01,200 --> 00:21:05,640 So these experiences actually taught me many things. 162 00:21:05,640 --> 00:21:14,700 For one, the patients whom we came across in the community would not be included in any survey of a 163 00:21:14,700 --> 00:21:21,150 mentally ill or even population surveys or censuses because they don't have an address. 164 00:21:21,150 --> 00:21:30,510 You are not. You cannot be registered unless you have an address, and most of these people are too poor to be included in service. 165 00:21:30,510 --> 00:21:34,710 Clearly, a hospital based service could not have served this population. 166 00:21:34,710 --> 00:21:41,220 Physical comorbidity is strikingly common amongst people with chronic mental illness, 167 00:21:41,220 --> 00:21:48,210 and it is not unusual to find the dead bodies of people on the roadside, 168 00:21:48,210 --> 00:21:53,990 sometimes knocked down by traffic, but very often probably succumbing to infections. 169 00:21:53,990 --> 00:22:03,780 At least three of the first hundred patients who were or residents who were taken into the home in order no longer had an HIV infection. 170 00:22:03,780 --> 00:22:12,450 Homelessness is one of the natural outcomes of chronic mental illness amongst low socio economic populations. 171 00:22:12,450 --> 00:22:16,740 This is something we are yet to get a grip on. 172 00:22:16,740 --> 00:22:30,990 We are very good at providing medicines, but less adept at addressing the other needs which present the model of caregiving, which I saw, 173 00:22:30,990 --> 00:22:39,030 which was extended by the NGOs and by the community, involved large doses of goodwill and networking, 174 00:22:39,030 --> 00:22:44,670 which was virtually unknown within the halls of our psychiatric hospital. 175 00:22:44,670 --> 00:22:50,760 And when I see networking, I mean that the possibility or the private citizen, 176 00:22:50,760 --> 00:22:57,330 the neighbour, a somebody who has a house near a homeless person on the street, 177 00:22:57,330 --> 00:23:08,490 shop owners NGOs come to people on the streets and provide food, sometimes clothing, sometimes a shave and a bath where necessary. 178 00:23:08,490 --> 00:23:17,850 It was the security guard of the Congo Embassy in Delhi who was able to connect us to the authorities in the embassy. 179 00:23:17,850 --> 00:23:22,440 A phone call that I made field Mr Chandrasekaran, a friend, 180 00:23:22,440 --> 00:23:31,050 knew the security guard who accessed the authorities and allowed us to arrange a return flight for the lady from Congo. 181 00:23:31,050 --> 00:23:36,660 The owner of a telephone booth in the Sunderbans helped us to locate a woman who had 182 00:23:36,660 --> 00:23:44,250 come all the way from the 24 Parganas to CMC and fallen unconscious outside the chapel. 183 00:23:44,250 --> 00:23:52,440 Police, village administrators and of course, medical personnel all joined together when the need arises, 184 00:23:52,440 --> 00:23:57,840 not knowing each other and they disappear into the woodwork once the need is over. 185 00:23:57,840 --> 00:24:05,520 This is truly a miraculous phenomenon, and it's worth emulating, at least knowing that it exists. 186 00:24:05,520 --> 00:24:09,660 A prominent question which comes up is who pays for all of this? 187 00:24:09,660 --> 00:24:13,320 And believe it or not, beyond the salaries that CMC paid, 188 00:24:13,320 --> 00:24:23,400 the medical professionals involved in this endeavour and the medical medicines which was subsidised by CMC, 189 00:24:23,400 --> 00:24:32,370 none of the money required was from a budget that was collected or was formally funded. 190 00:24:32,370 --> 00:24:40,050 Of course, the government provided partial funds for the home in the report, but apart from that, it was donations from friends, 191 00:24:40,050 --> 00:24:49,350 family, students, relatives of CMC patients who donated freely and enabled us to do what we did. 192 00:24:49,350 --> 00:24:54,120 Well, the family does not raise funds. They will accept voluntary donations. 193 00:24:54,120 --> 00:25:00,300 But their principle is to do what they can with what they have, wherever the need arises. 194 00:25:00,300 --> 00:25:11,500 So in conclusion, I would like to highlight that these experiences outside the academic institution have taught me. 195 00:25:11,500 --> 00:25:20,510 About the important role of poverty in managing psychiatric illness in the outcome of psychiatric illness. 196 00:25:20,510 --> 00:25:26,750 Poverty compounds the ravages of chronic psychiatric disease and medical treatment 197 00:25:26,750 --> 00:25:32,360 that is not tailored to socio economic reality is unlikely to be effective. 198 00:25:32,360 --> 00:25:38,750 Whenever we plan whatever plans we have for improving mental health services, 199 00:25:38,750 --> 00:25:51,140 we should incorporate and support existing community initiatives because they lend a totally different dimension to the care that is 200 00:25:51,140 --> 00:26:00,920 provided through liaison between professional and non-professional can result in a hole that is greater than the sum of its parts. 201 00:26:00,920 --> 00:26:16,000 I hope you find this useful.