Greetings from Vellore. My thanks to Dr Prem Lao Webster for the invitation to participate in this conference.
As my contribution to the deliberations, I wish to tell the stories of encounters with patients in the community and highlight the
differences between working in the hospital as as contrasted to working in the community.
I think all of us will agree that we have adequately quantified the many shortcomings of mental health services in India.
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.
I draw my population from the patients I have seen and treated within the psychiatry department of the Christian Medical College,
as well as those I have seen in liaison with NGOs, the Christian Medical College, Vellore 120 year old institution.
The psychiatric hospital was established approximately 60 years ago.
From 2008 to 2017, I was responsible for establishing and running psychiatric rehabilitation services.
The patients recruited for this unit were necessarily from the local area so that they could attend every day.
We ran to or this week and saw approximately 100 patients.
We also had a day care facility where patients who required training either in the
activities of daily living or in a vocational training could come and be catered to.
We quickly realised that in order to increase access and affordability to mental health services,
we should provide consultation at the various community centres,
which is part of Christian Medical College, both situated both in urban and rural areas.
The other part of our work involved liaising with NGOs who worked locally.
One of these is Hoodlum or Angle, and the founder, Mr Chandrasekaran actually challenged us very early on in our work in rehabilitation.
He said instead of going down the same wards every day, we should join him in rounds on the street.
And this is precisely what we did. And that is when we were introduced to a whole universe of patients in psychiatric disease,
which would never have been accessible at the main hospital.
Mr Chandrasekaran also inspired a young couple, Mr Ramesh and Mrs. Prema,
who established a home for the rehabilitation of homeless or rather the title is wandering mentally ill.
This was funded and licenced by the government, and they had just finished undergraduate courses in commerce and in computer applications.
So with no training in psychology or psychiatry, except the two days of exposure to the working of the Banyan.
This couple, this remarkable couple, is looking after approximately 70 patients, 70 residents who were rescued from off the streets.
We also extended our consultation service to the Missionaries of Charity Home on the outskirts of Vellore.
I wish to tell these stories of the patients of the people and they tell a story.
Mr V, for example,
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.
He responded very well to a minimal dose of antipsychotics, and of course, compliance was ensured by the staff of the home.
Here he displays proudly the money he has saved after selling his handicrafts.
However, even though the disease subsided, he never quite accepted the reality that he could not be supported by his family.
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.
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.
Year he returned to the original state in which he was picked up initially.
And this actually opened my eyes to the fact that a lot about caring for people involves maintaining a
delicate balance between establishing our treatment regimens and removing signs of psychiatric disease,
as well as maintaining a certain level of autonomy and allowing for patient preference.
The next person I would like to talk about is Mr. R,
who was standing for over six or seven months at the corner of a busy street, a street junction near the college.
He remained immobile, spoke to no one and seemed preoccupied.
He was clearly passing urine and motion into his clothes.
He accepted no food from anybody, except from a particular fruit vendor who used to give him bananas.
Mr. John mentioned Prima rescued him and took him to the home,
and when they were helping him to clean up, they discovered he was wearing 76 pieces of clothing.
This was layer upon layer of obviously clothing that people had donated and he had not removed.
He also responded within a year. He started speaking in Hindi and could not recall an address,
but remembered that the name of the college in which he was studying before he left home.
This is the same person at a picnic,
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.
The college was located in Allahabad and long story short, through a mission hospital in Allahabad.
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.
Mr. R was missing from home for four years.
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.
It was really enlightening to see what chronically a chronic mental illness which was left untreated could reduce a human being, too.
This is the standard way of rescuing patients.
What usually happens is the local people inform Ramesh Prima that there is a new entrant in their neighbourhood and remission.
Prima will just go and offer food and shelter, and very often the person will just accompany them to the home.
This lady was rescued. Similarly, she was also barely speaking in monosyllables.
She was not speaking a language that could be understood by any of us.
However, she settled into the home after she was registered with the police.
Unfortunately, she did not seem to be doing very well physically, and despite repeated physical examinations by a psychiatrist, we detected nothing.
A local physician took a chest X-ray and found a mediastinal mass,
and MRI of the brain revealed numerous nodular and ring shaped lesions in the hope that it process may be tuberculous in pathology.
An open biopsy was done by the Neurosurgery Department of Christian Medical College.
However, the biopsy proved she was suffering from a malignancy in the absence of any family.
She was taken to back to the home and cared for, nursed faithfully until she passed away in her sleep two months later.
This is not an outcome that we would desire or find adequate.
However, the importance of care sometimes overriding treatment is, I think, demonstrated by this story.
This lady spent most of her adult life tied by a rope around her waist, which was tethered to a stake in the ground.
Her elderly parents were unable to bring her even to the Christian Medical College, which was just a few kilometres away.
When we first discovered this lady in the community,
the parents refused to allow us to shift her to a home or to give her depo antipsychotics, which would have ensured compliance.
So we had to settle for regular visits and taking medicines for the parents who were diabetic and hypertensive.
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.
Yes, this is against most rules and regulations, but this is sometimes what we have to do.
As expected with people in the community with chronic mental illness, she succumb to a physical illness within six years of follow up.
So we should actually debate whether we contributed anything at all to her care.
In my opinion, supporting the parents in looking after her was a very important role.
This lady was brought in chains because there was no other way her brother could bring her.
She was non-cooperative. She is one of the many people who would never have made it to the main psychiatry hospital.
This young man was being treated in our outpatient services for a psychosis, rather florid psychosis in the middle of an exacerbation.
He climbed a transformer and touched a live wire.
Luckily, was thrown to the ground, but sustained burns across both upper limbs and across his chest.
He was taken by his widowed mother to the government hospital, which within three days realised they could not manage the problems he had.
We broke every rule in the book and got him admitted in the psychiatry wards,
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.
Physically, he even underwent a skin graft on the right index finger, which had touched the live wire.
However, in spite of the physical recovery,
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.
There is no home that will take on the long term care of people like this man who sorely need the help.
This is another instructive episode. This lady was found in the middle of an acute psychotic, agitated state,
jumping up and down and going raucously in a outskirts of Vellore in a village on the outskirts of Vellore.
Recognising her foreignness status. The local villagers bundled her into an ambulance and sent her to velocity.
And where did the ambulance take her not to the government hospital or even to the Christian Medical College?
They brought her to Mr Chandrasekaran, the founder of The Woman London, because they knew that he would help them.
Mr Chandrasekaran, of course, brought us into the picture,
and he managed to recruit the help of women constables to accompany the patient
while she was in our wards because we don't admit anybody without relatives.
He even managed to hold a foreign student from a nearby college to translate,
and we found out through his conversations with her that she came from the Democratic Republic of Congo.
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.
She had stopped taking her anticonvulsants and therefore had become subject to her epileptic psychosis.
So the psychosis settled fairly quickly after we restarted the anticonvulsants, but it was left to Mr Chandrasekhar to contact the family.
Get them to buy another ticket.
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.
Mr Chandrasekaran, by the way, has no position of power and he is a college dropout.
The one thing that drives him is the overpowering impulse to help people in need.
This lady suffers from a psychiatric problem, but her needs went way beyond that.
She has an alcoholic husband who has mild intellectual compromise.
She has delivered for girls, the last of whom is laid out two days after her birth in a corner of her slum.
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.
We had to work with this couple to get their consent for a two back to me.
So the psychiatric treatment was a small part of the whole endeavour.
She is currently working as a manual labour and earning an income for the family.
This lady lived for about 20 years under a tree on the side of the road.
The shopkeeper, whose shop was adjacent to her living place, adopted her as a blessing from God.
She used to clean this pavement in front of his shop and keep intruders away,
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.
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.
She told us she was keeping accounts for the government treasury, and when we offered to shift her to a home,
she said the country will be in a huge mess if she gives up her role in accounting.
She suffered from a schizophrenia and would periodically stand on the side of the road and shout into the air.
She would had paranoid delusions, but she was able to cook food for herself with the leaves that fell from the tree.
She was kept, provided and stocked. Her provisions were stopped by the shop owner.
She was given a sari when the shop owner Son got married and about seven or eight years after
we first came across her when she became frail and was found unconscious on the ground.
Then the shop owner gave us permission to shift her to the to the missionaries of Charity Home in Bochum, where she was.
She was looked after for a couple of months, after which she passed away peacefully, surrounded by people and well looked after.
So we were unable to treat her. We had no home to shift her to if we had given her forced medications on her.
We may have taken away the delusions that kept her going all those years.
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.
We came across many others who were eating from the garbage bins and drinking from the sewers.
We came across frail, elderly relatives who were the only people who represented family for our patients.
Patients came from houses like these, which were clearly, you know, indicated a fragmented society and deep poverty.
This is one of the more well-to-do areas from which our patients came.
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.
They could not take her to the psychiatric hospital in public transport because she would disrobe and she would be a disturbance to everybody.
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.
The father died of complications of alcoholism. The mother died of a tumour in the lung,
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.
She was found dead in her sleep after two three years of being admitted.
So there are ways in which the community is looking after their own.
There are ways in which passers by reach out to people in need.
This young gentleman on the right had bought some food,
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.
When we asked this man why he was doing what he was doing, he said that when he just gave this boy food,
which he obviously was in need of, stray dogs would come and eat the food before the boy could feed himself.
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.
These are the ways in which the communities instinctively reaching out to those in need, which we were never privileged to witness.
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,
involve them in gardening activities and in handicraft, making trees their families and return them to their homes if wherever.
All we needed to do as professionals was to consult, diagnose, prescribe and the rest was done by this NGO.
And I firmly believe that they run their home even better.
Then we run our psychiatric ward, said CMC.
We were able to take medicines to the homes of patients and provide even depo injections at their doorstep.
We were often unable to offer any treatment except to bear witness.
And this is the funeral of one of one such young girl who committed suicide.
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.
So these experiences actually taught me many things.
For one, the patients whom we came across in the community would not be included in any survey of a
mentally ill or even population surveys or censuses because they don't have an address.
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.
Clearly, a hospital based service could not have served this population.
Physical comorbidity is strikingly common amongst people with chronic mental illness,
and it is not unusual to find the dead bodies of people on the roadside,
sometimes knocked down by traffic, but very often probably succumbing to infections.
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.
Homelessness is one of the natural outcomes of chronic mental illness amongst low socio economic populations.
This is something we are yet to get a grip on.
We are very good at providing medicines, but less adept at addressing the other needs which present the model of caregiving, which I saw,
which was extended by the NGOs and by the community, involved large doses of goodwill and networking,
which was virtually unknown within the halls of our psychiatric hospital.
And when I see networking, I mean that the possibility or the private citizen,
the neighbour, a somebody who has a house near a homeless person on the street,
shop owners NGOs come to people on the streets and provide food, sometimes clothing, sometimes a shave and a bath where necessary.
It was the security guard of the Congo Embassy in Delhi who was able to connect us to the authorities in the embassy.
A phone call that I made field Mr Chandrasekaran, a friend,
knew the security guard who accessed the authorities and allowed us to arrange a return flight for the lady from Congo.
The owner of a telephone booth in the Sunderbans helped us to locate a woman who had
come all the way from the 24 Parganas to CMC and fallen unconscious outside the chapel.
Police, village administrators and of course, medical personnel all joined together when the need arises,
not knowing each other and they disappear into the woodwork once the need is over.
This is truly a miraculous phenomenon, and it's worth emulating, at least knowing that it exists.
A prominent question which comes up is who pays for all of this?
And believe it or not, beyond the salaries that CMC paid,
the medical professionals involved in this endeavour and the medical medicines which was subsidised by CMC,
none of the money required was from a budget that was collected or was formally funded.
Of course, the government provided partial funds for the home in the report, but apart from that, it was donations from friends,
family, students, relatives of CMC patients who donated freely and enabled us to do what we did.
Well, the family does not raise funds. They will accept voluntary donations.
But their principle is to do what they can with what they have, wherever the need arises.
So in conclusion, I would like to highlight that these experiences outside the academic institution have taught me.
About the important role of poverty in managing psychiatric illness in the outcome of psychiatric illness.
Poverty compounds the ravages of chronic psychiatric disease and medical treatment
that is not tailored to socio economic reality is unlikely to be effective.
Whenever we plan whatever plans we have for improving mental health services,
we should incorporate and support existing community initiatives because they lend a totally different dimension to the care that is
provided through liaison between professional and non-professional can result in a hole that is greater than the sum of its parts.
I hope you find this useful.