SAA’s Stitch Initiative

I recently read about new Hindi movie Judgmental Hai Kya and whole controversy about its title which was earlier Mental Hai Kya. This example reminded me once more about the lack of awareness, ignorance, stigma attached to mental illness and mental health in general in our society. I have been associated with Schizophrenia Awareness Association(SAA) since 2009 in various forms. This is Pune based non-government organization(NGO) in the domain of mental health. Its primary purpose of existence is spreading awareness about mental health in the society, work towards rehabilitation, increase acceptance of people effected by mental health issues, publications, and many other means. It also completed two decades of its existence and service. I used run self help support groups(SHSG) in PCMC area also. I have written about mental health topics on this blog here.

We all have been observing the inaccurate portrayal of people affected by mental health issues, in the various forms of media. SAA, and many other organizations are bringing this up and help correct it. As you can think, one of the reasons for this is that the public stigma associated with mental health in the society. It is very easy to typecast such people. It happens in every part of society. May it be our neighborhood, our offices, colleges, and other places where public interaction takes place. Such people are often abused by using various terms and words, quite casually, which are demeaning, in local languages, and stigma is in our attitude also many a times. They become laughing stock. It, of course, does not help them, in their path of recovery; in fact, it worsens the situation most of the times. And in the cases, where persons who have not been initiated into treatment yet, stigma further deters them from getting one. As per one report, 3 out of 4 people suffering from mental illness, report stigmatized.

Mental Health Stigma

Courtesy: Photo by Dan Meyers on Unsplash

Mental illness is illness similar to other illnesses, such as cancer. While cancer does not get stigmatized, mental illness get hugely stigmatized. SAA recognized the need to tackle stigma now more directly. It has been part of awareness campaigns in some or the other form. SAA came up with a program called STITCH, which is an acronym of two words Stigma and Watch. There been some organizations carrying out similar activities of watching and reporting stigma incidences under the name of StigmaWatch. One such organization exists in Australia and more details can be found here. I also watched recently a lightening talk on this topic on TEDx. You can watch it here. There are many more inspiring talks on the topic on TEDx. SAA describes in detail as to what it intends to do in this area, on its website as below:

Stigma acts as a continuous source of shame and guilt for persons with mental illness and even their family members. There are over hundred stigmatic labels associated with mental illness. These labels which are passed from one person to another carry a feeling of rejection, abandonment & mockery. They demean, belittle and are of abusive nature. The stigma associated with mental illness is so deep rooted in the collective consciousness of the society that help is seldom available to the sufferer. Even if the sufferer has managed his disorder, there is insignificant acceptance. Due to stigma and social barriers, persons with mental illness are prevented from exercising their capacities and accessing socio-economic resources at par with others, thus pushing them to poverty and deprivation and making them the most vulnerable and marginalized section of the society.

De-stigmatization campaigns are conducted intermittently. Their reach is, however, limited and it hardly helps to change the mindset of people. The effect disappears once the campaign is over. Generally it is assumed that once the awareness is created stigma will vanish. But stigma may not necessarily reduce along with increase in awareness efforts. SAA’s Stitch Program aims to reduce stigma associated with mental illness. It’s an acronym of Stigma Watch. The project aims to stitch the torn apart (sufferers & caregivers) with the mainstream so that there remains no discrimination on the grounds of mental illness. The project aims to create stigma awareness and implement de-stigmatization programs in Pune and some adjoining districts, and gradually spread it in Maharashtra by conducting Train the Trainer (TTT) programs.

The objective of the project is

  1. To help people understand that how do they contribute unconsciously in spreading stigma
  2. To help people understand that what steps can they take to reduce stigma
  3. Identifying occurrences of stigma in daily life, shedding light on it, and insisting and pursuing corrective measures to stop the stigma from spreading further
  4. Supporting individuals and caregivers directly and indirectly affected by stigma and fostering their agency

Suitable short and long training sessions are proposed to be developed and conducted to sensitize mental health professionals, patients, caregivers and lay persons.

One of the sessions is organized, for care givers, by SAA on Aug 8, 2019 in Pune. Here are the details:

पालकांसाठी स्टिच उपक्रम
 गेल्या वर्षापासून आपण समाजातील स्टिग्मा कमी करण्यासाठी स्टिच हा उपक्रम घेत आहोत. स्टिग्मा चे स्वरूप आणि परिणाम समजावून देणे आणि स्टिग्मा कमी करण्यासाठी आपण काय करू शकतो, अगदी एक सर्वसामान्य नागरिक म्हणून देखील, याविषयी चर्चा या कार्यक्रमात होत असते.
 सर्वसामान्य नागरिक ,विद्यार्थी, पालक तसेच शुभार्थी अशा सर्वांसाठी स्वतंत्रपणे कार्यक्रम आपण आयोजित करत आहोत. अशा कार्यक्रमातून जी चर्चा आणि अनुभवांची देवाण-घेवाण होते ती डॉक्युमेंट करून पुढील कार्यक्रमांसाठी आपण वापरत करत आहोत.
 याच कार्यक्रमाचा एक भाग म्हणून डेक्कन जिमखान्या वरील गुप्ते हॉस्पिटल मध्ये दुपारी तीन ते साडेपाच या दरम्यान पालकांची सभा होणार आहे . कुटुंबियांना आणि रुग्णाला आलेल्या कलंकविषयक अनुभवांची माहिती पालक शेअर करतील आणि त्यावर त्यांनी कशा पद्धतीने प्रतिसाद दिला यावर चर्चा होईल.
Gupte Hospital (Accurate Diagnostics Private Limited)
904, Bhandarkar Road, Ganeshwadi, Deccan Gymkhana, Pune, Maharashtra 411004
Phone-020 2540 1700
पालकांच्या स्टिच प्रोग्रॅमसाठी काढलेले आणि पालकांना कार्यक्रमा पूर्वी विचारण्यात येणारे प्रश्न..केवळ विचारार्थ:
  1. नातेवाइकांकडून अथवा ओळखीच्या लोकांकडून कुटुंबातील व्यक्तीला मानसिक आजार असल्यामुळे कमीपणा आणणा रा, हेटाळणी करणारा अनुभव आपल्याला आला असे वाटते का?
  2. भेदभाव करणारे कमीपणा आणणारे शब्द, वाक्य, हावभाव, वर्तन आपणाला अनुभवाला आले असे आपणाला वाटते का ?
  3. शब्द अथवा वाक्य अथवा वर्तना पाठीमागचा उद्देश काय असावा?
  4. अशा अनुभवांमुळे त्यावेळी आपणाला काय वाटले? आपली प्रतिक्रिया काय होती? काय परिणाम झाला?
  5. आपल्या शुभार्थी अथवा कुटुंबातील अन्य व्यक्तींवर त्याचा काय परिणाम झाला?
  6. आज पाठीमागे वळून बघताना आपल्याला त्या विषयी काय वाटते? आपल्याला आणखीन वेगळ्या पद्धतीने तोंड देता आले असते असे वाटते का
  7. असा अनुभव आला नसता तर आजारामधून बाहेर पडण्यास मदत झाली असती असे आपणास वाटते का?
This blog is an appeal to attend this very useful program and help SAA’s mission counter stigma in the society towards mental health. Help raise stigma against mental illness.

Good Will Hunting

मी मानसिक आजाराच्या क्षेत्रात काम करत असल्यामुळे, मला मानसिक आजार, त्यावरील उपचार, किंवा समाज त्या कडे असा पाहतो, त्याचे चित्रपटातून, नाटकातून कसे होते, यात मला रस असतो. ह्या पूर्वी देखील मी त्याबद्दल Movies and Mental Illness ह्या ब्लॉग मध्ये लिहिले आहे. त्यामुळे, जेव्हा Good Will Hunting हा चित्रपट प्रसारित केला जाणार आहे हे कळल्यानंतर तो मी पाहायला बसलो, आणि तो संपेपर्यंत उठलोच नाही. असे क्वचितच होते.

कथा घडते ती अमेरीकीतील बोस्टन ह्या शहरात. नायक गणित विषयात अतिशय बुद्धीमान आहे(प्रसिद्ध भारतीय गणिती रामानुजनसारखी प्रतिभा आहे, असेच त्यात दाखवले आहे). पण हा नायक हार्वर्ड विद्यापीठात शिकत नसतो तर, तेथे साफ-सफाई कामगार म्हणून काम करतो. विद्यापीठातील एका नामांकित गणित प्राध्यापकाला त्याची प्रतिभा उमजते. पण त्याला हेही समजते की हा काही मानसिक आजाराने ग्रासला आहे(लहानपणीच्या काही अनुभवांमुळे), आणि त्याला समुदेशन देऊन, त्याच्या प्रतिभेच्या लायकीचे त्याला काम करण्यास उद्युक्त करावे अश्या नेक विचाराने, त्याला समुदेशनासाठी वेगवेगळया ठिकाणी घेवून जातो. पण आपला नायक काही त्यांची डाळ शिजून देत नाही. त्याला एकदा तर संमोहन तज्ञाकडे देखील घेवून जातो. तेथेही नायक धमाल करतो. मग शेवटी तो त्याला त्याचा वर्गमित्र असलेल्या प्रसिद्ध समुपदेशकाकडे घेवून जातो. आणि त्यानंतर जे काही घडते ते चित्रपटात पाहायला हवे.  चित्रपटात बोस्टन शहराचे छान चित्रीकरण आहे. मी कधी तेथे गेलो नाही.  रॉबिन विलियम्सने त्या समुपदेशकाची भूमिका यात केली आहे. त्यासाठी त्याला ऑस्कर देखील मिळाले होते. साधारण दोन वर्षांपूर्वी  रॉबिन विलियम्सचे निधन झाले. अतिशय मनस्वी असलेल्या हा कलाकाराने आत्महत्या केली होती असे नंतर समजले. हा चित्रपट पाहिल्यानंतर, आणि विशेषतः त्याची ह्या चित्रपटातील असलेली भूमिका पाहताना, त्याने आत्महत्या केली असेल यावर कसा विश्वास बसावा, नाही का?

मी मानसिक आजार क्षेत्रात Schizophrenia Awareness Association(SAA) या संस्थेतर्फे शुभांकरांचा स्वमदत गट चालवतो. त्यात सामान्य समुपदेशक(lay counselor, facilitator) म्हणून, गटाचा समन्वयक म्हणून काम करतो. येथे आमच्या स्वमदत गटाची महिन्यातून दोनदा भेट होते. त्यावेळेस वेगवेगळ्या अनुभवातून जावे लागते. या चित्रपटातून जसे दाखवले आहे, तसे, अनुभव येत असतात. आपल्याला काही झाले नाही, आपण ठिक आहोत अशी समजूत असते. कोणी तसे दाखवून दिल्यावर, किंवा समुपदेशनाची, उपचाराची गरज आहे असे सांगितल्यास, आगपाखड करणे अश्या गोष्टी घडतात. तसेच, व्यवसाईक समुपदेशकाकडे गेल्यानंतर, समुपदेशनाचा तथाकथित(?) डाव समुपदेशकावरच उलटवणे वगैरे असे प्रकार घडतात. ह्या चित्रपटाच्या निमित्ताने हे सर्व आठवले. आमच्या संस्थेच्या विविध कार्यशाळांत संमोहन, किंवा इतर तत्सम प्रकार मानसिक आजारांत कितीपत उपयोगी पडतात याची चर्चा घडत असते, आणि सर्वसाधारण मत असे असतो की त्याने विशेष फरक पडत नाही. ह्या चित्रपटातून, नायकाला मानसिक आजाराची वेगवेगळी लक्षणे जसे की mood disorder, stress, inferiority complexity, post-traumatic stress disorder इत्यादी संयत पद्धतीने दाखवली गेली आहेत. पण चित्रपटात ह्या पद्धतीने सामुदेशन करताना दाखवले आहे, ते थोडेसे फिल्मी आहे असे म्हणावे लागेल. प्रत्यक्षात, समुपदेशकाने शुभार्थीला धमकावणे, गळा पकडणे इत्यादी प्रकार कसे काय होतील, असा विचार येतो. समुपदेशक आणि शुभार्थी यांचे नाते किती वेगवेगळया पदारांवर असू शकते हे हा चित्रपट नक्कीच दाखवतो.

चित्रपटाच्या नायकाबद्दल थोडेसे. तो आहे प्रसिद्ध अभिनेता Matt Damon. ह्या चित्रपटासंदर्भात असलेल्या विकिपीडिया वर असे लिहिले आहे की Matt Damon नाट्यलेखनाचा अभ्यास करत असताना ह्या चित्रपटाची पटकथा लिहायला सुरुवात केली होती. त्याने ह्या चित्रपटात छान भूमिका केली आहे. त्याने बऱ्याच चित्रपटातून काम केले आहे. नुकतेच असे वाचनात आले की त्याचा नवीन चित्रपट Jason Bourne चीनमध्ये वेगळ्याच कारणाने चर्चेत आहे. ते कारण म्हणजे, तो 3-D चित्रपट ज्या पद्धतीने चित्रित केला आहे, त्याने प्रेक्षकांना डोकेदुखी सुरु होते म्हणे. तर ते असो. मानसिक आजार, व्यक्ती, उपचार अशा गोष्टी असलेल्या अजून बरेच चांगले(तसेच वाईटही आहेत) चित्रपट आहेत. तेही पाहायचेत केव्हातरी.

 

Return Gift-Touching Short Film

 

My friend Achyut Chopade, an IT professional turned into a film professional, has come up with another of his short film. I had talked about his earlier award winning short film Ardhaviram here on this blog. I finally got to watch this film titled as Return Gift. It is a Marathi short film with English subtitles. I have been indirectly associated with this film, since the he had narrated the script almost 8-9 months back, during the Sunday when we had gone for watching a play which was being arranged under a new concept of Sunday Morning Breakfast with Play in Pune.

The story of the film is simple. Poor maid’s daughter wishes to celebrate her birthday. And her wishes are gone for toss because of her drunkard father. Film ends on a happy note where, her father goes under transformation and kid gets celebrate her birthday. It is approximately 22 minutes’ short film. It begins with a scene at maid’s shack, where kid is nagging her sleepy mother for celebrating the birthday next day. Next scene is where the duo lands into house where maid works, and incidentally, the house is also busy enjoying birthday party. This where emotional turmoil begins in the mind of the kid which is portrayed beautifully. The maid succeeds in lending money for kid’s birthday. But their plans get shattered due to kid’s father who is habitual drinker. The scenes of loving father and his relationship with his daughter are also portrayed very well, by the actors. The drunkard father realizes his misdeeds and the film ends on happy note and with a power message against liquor abuse and addiction which is a major social issue in the country. To understand what transforms the father, one needs to wait to watch the movie. I don’t want to be a spoiler here.

The film is shot entirely in the housing society where me and Achyut live. I still remember the frantic activities on a fine Saturday of January this year, when he and his team(which includes another friend of mine, Bhushan Kulkarni, who volunteers with me at Schizophrenia Awareness Association-SAA, and a budding film professional and another common friend Atul Khade, amateur photographer) had gathered for a film shooting near my house. It had created much of excitement to onlookers as to what was going on. Achyut had also looked my house for birthday party scenes before going for my neighbor’s house instead. There are many intense scenes, filled with emotions, but during the shooting we did not notice that intensity. The process of making film, and watching it turn into a impacting story is absolutely different experience, and many of use were in awe. The impact it creates is very different when one watches a movie in its entirety.

I will share the short film’s YouTube link once it is made available by Achyut. Don’t miss to watch that to appreciate not only the message but also way it comes across the viewers.

Emotions and Schizophrenia

At Schizophrenia Awareness Association(SAA) where I volunteer and support, on every fourth Saturday, a guest lecture is arranged, as part of awareness and knowledge sharing for patients with mental illness(PMI) and their caregivers. The process of recovery and caregiving is very challenging process and these monthly supplemental sessions, along with self-help support groups(SHSGs) help both PMI and caregiver. This month’s session was on role of emotions management for PMI and caregivers. This was delivered by renowned psychologist Dr C G Deshpande. I managed to attend this fourth Saturday(April 23) session after long time, I wanted to cover this topic here on the blog.

thought

Image courtesy by SAA 2015 desktop calendar

Dr C G Deshpande, now in his eighties, is renowned psychologist, professor at various universities, researcher and author of various books. His latest book titled Treatment Resistant Schizophrenia, which deals with topic of chronic schizophrenia, why don’t they respond to treatments, and what can be done about it. This book came out as outcome of major research project he had undertaken under UGC grant. He started his speech by remembering Dr Shirwaikar, who was among the first ones to underline the importance of psychological aspects during treatment of schizophrenia, along with medicines, which he termed as behavioral medicine. He then went on sighting different examples and cases where significance of emotions was underlined.

We often hear word like emotional quotient and why it is important. Having emotional intelligence, emotional literacy in the families is becoming increasing a need of the hour. Empathy plays important role in building trusted relations in all walks of life. He quoted famous author Dennis Jaffe’s famous statement, all diseases are social diseases. It is now widely accepted that emotions impact body. Emotions are learnt socially and covers spectrum of aspects including understanding our own emotions, and also of others, responding appropriately to them. In the western world, the new discipline called Self Science has been developed for enhancing emotional well-being, emotional literacy, especially at young age. He also elaborated a personality disorder Alexithymia which is related to inert inability to understand and express emotions. Many mental illnesses find their roots in lack of understanding emotions, not able to respond appropriately to emotional needs of members of the family, or emotional trauma which persons go through. He also highlighted another psychological aspect which is anxiety and how it can cause mental disorder. He underlined the need of empathizing with PMIs on their feelings and emotions. While talking of emotions, and ability to express them, he touched upon a very fundamental topic of schizophrenia which is related to fact that PMIs generally loose coordination between emotions, thought and behavior. He elaborated that, during counseling process  one can apply concept called by applying EDLOF(emotional discrimination and labeling of faces), to recognize the deviation.

Similarly, he underlined the need of being cognizant of the emotions of PMI as well as caregiver, and appropriately responding to them. Specifically, the challenges in the journey of caregiving, the understanding of general psychology becomes important. Some aspects of REBT in caregiving were handled during a session at SAA sometime back. He underlined the need of creating, as far as possible, a permissive atmosphere, rather than disciplined or authoritarian atmosphere for PMIs that can go long way in recovery process. In other words, the irritation quotient of caregivers needs to be low, and emotional quotient needs to be higher. He also went on giving some tips to caregivers, such as accepting emotions of PMIs as they are, never using emotionally loaded negative words during conversations with PMIs, never punish PMIs including emotional punishment, empathize with PMIs, recognizing/keeping track of emotional level at various time during the day, keeping normal emotions and facial expressions as far possible.

This session which lasted for more than an hour, was quite enlightening covering aspects of psychology in general and emotions specifically. I am sure this will help caregivers and counselors understand and deal with various challenges in the process of their wards’ recovery and caregiving itself.

Petition for life care for persons with mental illness

I have talked on the topic of persons with mental illnesses, and issues related to various aspects of mental health on my blog here. I also volunteer and support Pune based Schizophrenia Awareness Association(SAA) and have been associated with Bengaluru based FACEMi. One of the daunting issues in mental health in the society is supporting persons with mental illness(PMI) during their battle with life, and rehabilitation. The rehabilitation is most of the times a life long process, especially, when a person is suffering from major mental illnesses such as schizophrenia, mania or depression. Providing care and support during this process is absolutely essential. Giving care to PMIs by his/her relatives is something we certainly see happening, but there are challenges in that also, which is another topic for a blog.

The issue I want to talk today here is about related to concern or worry of care givers about care giving their wards after their death. Unless the next set of care givers arise, it is very much possible the PMIs are left stranded with no one to look after them. We often see PMIs left alone on the streets, homeless, with no one to look after them. Of course, many of them are suffering from other illnesses such Alzheimer’s disease or Parkinson’s disease(Recent Marathi movie Astu अस्तु, starred by Dr Mohan Agashe handled this subject).

There are good samaritans in the society like, one doctor couple in Ahmednagar near Pune doing work in this area, by taking care of such stranded PMIs. The name of the organization is Mauli Seva Pratishthan, and is started by Dr Mr and Mrs Dhamane. You may check their website here. But such facilities are going to have their own limitations due to funds and cannot scale all over the country. Even at SAA, during our meetings, we have heard shubhankars(शुभंकर, care givers) raising this concern and the need, many times. SAA is trying to address the issue to its capacity and for the members of the organization. That is also going to have limitations though as said earlier.

So what is the ask here? The government should do something about it. And it is high time for it. FACEMi has been on the forefront in terms of advocating this topic. Is this trending a life sentence or a death sentence? And how long will it take for the government to act? This is the question families and patients numbering almost 80 million in India, suffering from severe and common mental disorders are asking. The government has access to resources and funds to undertake such activity.

PMI

Petition for life care for persons with mental illness. Image courtesy: FACEMi petition page on Change.org

The central government Ministry of Health has a network of more than 40 regional mental hospitals, and many more autonomous institutions. The mental hospitals or general hospitals sponsored and supported by state government and municipal corporations having psychiatric department, are also available. I know, the plight of these government mental hospitals is in itself a big topic to discuss and needs to huge improvement. This has been raised on various forums and we keep reading about them in the newspapers.

mental-hospital

Regional Mental Hospital, Yerwada, Pune

Anyways, FACEMi has filed petition to seek support from general public on the cause of life care for PMIs, especially, after death of their primary care givers, and lack of willingness or secondary care givers or lack of them. FACEMi wants your support on this petition. I have signed it. I appeal my readers to review and sign it here. This petition  is to make the government take immediate action for providing life care for persons with mental illness and set up a NATIONAL MENTAL DISABILITY LIFE CARE TRUST under the Prime Ministers Office(PMO) so that the buck is not passed on from one ministry (Health) to the other (Disability/Social Justice Ministry) as it is happening at present. There are right now two ways of admitting to these mental hospitals is. One if voluntary, and the other by relatives, with support from court. This process may require changes to allow government authority to identify and admit them, may be with help of court, and treat them. Of course, social organizations working in this area can certainly lend a hand here, but then that also needs to be accommodated in the procedure. These mental hospitals also needs to be enhanced to have special sections such as day care for such PMIs where they are looked after, and helped in the process of rehabilitation.

The organizations such as Change.org are excellent examples of technology can make it easy to bring changes to society by garnering support of the population for the noble and right causes.  Hope this creates change here. Please sign this petition and help to bring this much required change to support persons with mental illness.

Mental health depiction in films

Don Juan DeMarco

As mentioned many times on this blog, I am volunteer and supporter of Schizophrenia Awareness Association(SAA) in Pune, which is active in spreading awareness of schizophrenia and other related mental illnesses. I also work as facilitator for self help support group(SHSG) for care takers and also for people affected by mental illness. One of the challenges organizations like SAA face to eliminate misconceptions and misinterpretations of various incidents that take place in society involving so called mad people. The recent example are quite fresh in memory. One of them was involving a person taking charge of a passenger bus in Pune and driving rashly killing few people. This happened last year. The other one happened last month in Delhi where a person killed himself and family members.

The film media also has portrayed mental illness in different manners over the years. We all can share these depictions in Indian films and also western films, as we see them now and again. Mental illness or so called “abnormal behavior” is popular theme used in the films to draw attention.

I recently came across Diwali special edition of Marathi magazine titled Vishranti(विश्रांती), which was dedicated to mental illness. One of the articles was about the portrayal of mental illness in film media(which I translated here in English later). I do intend to do bigger blog on this topic, but here I can draw some quick examples. Many times we see characters depicted as mad or different to generate comedy. The villains also have been shown as having extreme mannerisms or attitude having shades of mental illnesses. But at the same time, we find movies portraying them in positive manner as well. Marathi movie Devrai(देवराई), Hindi movie Taare Jamin Par(तारे जमीन पर) are few examples. Mentally ill characters are also used to depict mystery or terror which is done in movies such as Psycho, Silence of Lambs. The famous Hindi movie Devdas(देवदास) contains depiction of depression and alcoholism.

Mental health depiction in films

Don Juan DeMarco (Image courtesy: Internet

But yesterday, I came across an interesting movie titled Don Juan DeMacro while surfing on the idiot box aka television. I did not watch the whole movie, but I can share the concept which is very different. Don Juan is a Spanish legendary character known as a womanizer, to the extent of loosing self control and displaying lunatic behaviors, popularized in Spanish literature since 15th century. So in this movie, a person who calls himself or thinks himself as Don Juan, undergoing consultation with a psychiatrist. The mental issue depicted here is that, that person is undergoing delusion where he thinks of himself as Don Juan.  BTW, this person is portrayed by young Johnny Deep and he was very nice to watch. The problem lies further. It so happens that the psychiatrist gets involved in his story and his delusion as he narrates him during consulting sessions, where he draws parallels in his troubled and aging married life.

Now this is an interesting thought. And it underlines the very important aspect of people involved in giving care to mentally ill persons. And this is what is stressed as one of points to care takers who are part of our SHSG meetings. It is very natural that when care takers are living with personas with mental illness(PMI) people around them all the time, their so called “normal” behavior also can get impacted. It is very much possible to go to the extent of relating PMIs delusions, and other mental conditions, to ones personal life as well. And that can be devastating in the process of giving care and recovery path. Techniques such as REBT for care givers can be one way to get around this aspect.

Technology in mental health care giving

Technology, specifically, information technology(IT) has entered in every realm of human life. How can health domain stay away from it? Bringing IT to health domain has been happening for quite some time now. Bringing efficiency, speed, accuracy to deliver health services is the key focus. Capturing medical and health data, and using that for analysis, ease of access to benefit users by way of Electronic Health Care(EHR) is another big initiative in the recent times. Various standards such as HIPAA have come out because various stake holders which are involved in the game. I am not even talking of technology based innovations such as electronic devices for various medical instruments, medical imaging, robots carrying out surgeries. In the past, I have been associated with two startups involved in health domain. One was involved in pathology domain, and another was involved in hospital logistics management.

Mental health is domain which is slightly different and is also seeing technology based innovation helping various stakeholders there. Apart from applying usual technology based solutions to mental health domain, there are specific challenges which needs to addressed. I support and volunteer Schizophrenia Awareness Association(SAA). We deal with key stakeholders such as persons with mental illness(PMI), psychiatrists, counsellers and caregivers. There are many challenges, and some of them can be solved using IT specifically using social, mobile, analytics, cloud(SMAC) based solutions. According to WHO, worldwide, there are 450 million PMI served by 200 thousand psychiatrists. There is a huge demand supply gap. Psychiatrists cannot spend enough time with their patients. In mental health domain, talking to PMI and caregiver on issues, progress since last visit, is key for treatment(rather than physical examination in case of other illnesses). I wanted to write about couple of initiatives I know of which are addressing these challenges using technology in their own way.

First one is a USA based company named TrustCircle. I happened to interact with their founder Sachin Chaudhary during a session in SAA recently. He himself a caregiver, got inspired by challenges faced, worked towards creating his mobile app. The app is still under limited pilot and is by invitation only. The app is peer centered mental health network, for better communication between service provider, PMI and caregiver. You may find more about it here. In case of mental health, the trust, privacy, consent of PMI are key elements.

TrustCircle

One needs to take care of these in every aspect of their treatment, rehabilitation. The other aspect is also of rights of PMI. Any technology based solution needs to ensure that this is taken care of. The name of their app epitomizes this fact-TrustCircle, which fosters to create network of trusted individuals or organization. The app is in its initial stages, and they have sizable plans to improve its functionality and usefulness with various features to be launched in due course of time. You may find many more such innovations in mental health domain over here.

The other example I know of is The Hope Network about which I read about in the news paper sometime back. It is online counselling portal, repository of useful information to stake holders in the mental illness care-giving. The counselling can happen via email, text chat, voice chat or video chat. You may find more info on their website here. Their scope and reach is broader, not just limited to mental health, but also in the area of psychological issues, relationship issues among others.

Please feel to share your technology innovation in mental health, whether you are part of or are aware of.

Recovery

I have been associated with organization called Schizophrenia Awareness Association(SAA) since 2009 as supporter and volunteer. And I have written on this blog few times in the past(Introduction to SAA, REBT, SHSG). During my association, my understanding about mental health issues, and challenges got better. Recovery and rehabilitation of persons suffering from mental health issues is ultimate goal for anyone involved. SAA conducts sessions for both patients and care givers, covering various topics, focusing on recovery and rehab, along with various other stages of mental health.

Abraham Low, famous psychiatrist came with set of guidelines and methods to employ during recovery process for people with mental health issues. These days, I am reading Marathi translation of his biography written by Neil & Margaret Rau(I will write more about the book later on the blog). Here, I wanted to talk about recovery process. His proposition is around self-help and self-instruction. In 1931, he came up with simple and effective technique to be employed during recovery process. Encouraged by seeing results of this method, he and others were involved in founding organization called Recovery International.

Recovery Method focuses on Spotting, reframing defeatist language, self-endorsement and creating Examples. Some of the most common spotting tools, which we use, during SHSG meeting at SAA are described here. Spotting refers to consciously increasing self-awareness and identifying what is happening and preparing to cope up with it. Reframing language refers to avoid self-diagnosis and encourages seeking help of doctor, many times it is negative or not aligned with reality. Self-diagnosis is very common with persons affected with mental health. Self-endorsement is a technique related to dividing larger goal into smaller objectives, and reminding oneself to stick to those, no matter what the outcome would be. Creating Examples technique encourages person to recognize and record experiences and challenges faces, and failures and success of dealing with it. And more importantly, talking about it and sharing them in next SHSG meetings.

I would like to conclude this blog on a different note altogether. In my professional life, I am involved in information technology business. Enterprises these days have become more aware of disaster recovery(DR). At Sungard AS where I work, we have solutions and services built around DR. Fundamental tenets of recovery from disasters, is backing up/replicating IT environment and data. Disasters can happen anytime. And when they happen, these backups or replicated information is used to recover from the disaster. I cannot help myself wonder on possibility of similar avenue for humans. When brain encounters disasters, it should be possible to recover to previous good state. I know, I don’t want to get into eternal argument of man and machine comparison-we are far from nearing it despite the fact that so much of innovation is taking place around nano-technology and wearable devices. May be, intelligent machines, robots, who carry artificial intelligence, are recoverable in this manner, as they are ultimately machine in true sense. But recovery for human beings in this manner is a scary thought, to say the least.

Feel free to share your thoughts and experiences.

PS: Update on Oct 11, 2015: I finally finished the book My Dear Ones which is referred above. I have written about it here

Self help books/how to books-How useful they really are?

In my housing society complex(Kunal Icon), we celebrate Independence Day and Republic Day every year by flat hoisting and also arranging a guest lecture by experts/accomplished personalities. We had famous Marathi author, playwright Shivraj Gorle for this year’s Republic Day celebrations. He is very famous self help book writer. He, being a very good orator, entertained audience in his lucid and attractive style about art of living.

The question raised in the title of the blog came to fore once again while I was listening to him. This has always been in my mind as a question asked quite often. At the same time, we all know how big the market on such category of books, and many of the bestsellers are from this category. That means people are buying it, reading it, but not sure how useful this bibliotherapy is if followed verbatim. I personally was never a great fan of such books and never took them very seriously.

It is said that such category of self help books, ‘how to books’ started with Dale Carnegie’s book titled ‘How to Win Friends and Influence People?’ in early 20th century. Do they really help the readers? Some books are based on own experiences, others are based on psychological theories, while few others try to give case studies, and also prescriptive solutions.

Gorle raised the same question and he was more inclined towards saying that they do help, and he threw readers’ responses as proofs. Gorle, of course, stressed that such books can help only if advice is put in practice. One needs to approach with open mind and accept change.

While some other authors such as Sanjay Bhaskar Joshi, has expressed views effectively discounting the usefulness of such books, rather cautioning on going blind eyed. They do indeed help author and publisher nonetheless, as such books are sold typically as hot cakes.

Everybody goes through levels of challenges and stressful situations on various fronts such as career, relationships. Most of us try to find a quick way out for problems. As humans, we typically look for prescriptive solutions for problems we face. I come across many such cases as I have been working as lay counselor for a self-help support-group(SHSG) in mental health domain under SAA. The fact is that there is no such hard-cast solution. There could be some patterns. But again those need to applied in each case very diligently.

What do you think?

REBT for caregivers

Next week, SAA is organizing workshop on REBT(rational emotive behavior therapy) for caregivers once again. As you know SAA in Pune works in mental health area. I support it and volunteer as well. The workshop this time it is longer than earlier and is for 4 days. I had attended a similar workshop few months back in SAA Itself. Thought I should write an introduction about it based on my experience there. Please encourage your acquaintances to attend it.

REBT is invented by Dr Albert Ellis famous American psychiatrist. It is a practical technique to help an individual self-examine, understand behavioral patterns and root causes of disturbances, and correct them, ultimately, leading to happy and satisfied life. REBT examines personality types and what affects those patterns. This therapy is aimed at the modification of specific, overt mal-adaptive behaviors, reduce undesirable behavior. Caregivers(shubhankars) dealing with mentally ill(shubharthis), go through tremendous stress. Unless, caregiver does not understand oneself better, the care giving process will incur further stress. REBT can help us understand shubhankar and shubharthi better. It helps us to identify appropriate and inappropriate emotions.

The basic premise is that if the shubhankar is mentally sound and well, he/she can be more effective in care giving process.  It also gives important tips on managing emotions and living assertively. An Assertive person is completely aware of following rights as regards to self and others.

SAA has teamed up with experts at Disha Psychological Counselling Center for this workshop. The charges for 4 day(two weekends, Mar 6/7 and Mar 14/15) workshop are very reasonable. Please reach out me or SAA for more information.