Giving back control: What Mental Health Care Bill, 2013 means for the mentally ill

By Asif Kalam

What might it mean for people who live with mental illnesses to be given control over how they will receive medical care? The Rajya Sabha recently passed the Mental Health Care Bill, 2013, which aims to safeguard the rights of people with mental illnesses. It prioritises choices made by patients, and replaces the archaic Mental Health Act, 1987. One of the Bill’s significant new provisions is the Advance Directive, which allows persons living with mental illness to create a document with instructions on how they must be treated and cared for in the event that they are incapacitated by an episode of illness.

The Bill also allows individuals to nominate a representative to take treatment decisions on their behalf if required. Mental Health Review Boards (MHRBs), quasi-judicial bodies that will be set up in every district, will be entrusted with the certification, custody, review, and arbitration of Advance Directives.

Representational image. AFP

"Part of the terror of mental illness is losing control over your mind, and knowing that you will probably lose even more as you grow older,” says Sneha, a 30-year-old writer based in Bangalore, who is bipolar. “To be able to write advance instructions for one’s treatment helps give back some of that control," she adds, when asked about what it might mean for her to be able to make these decisions for oneself. Manisha*, a 26-year-old writer who lives with borderline personality disorder, seems to echo this when she says, “Having a treatment plan in place — even if it’s as simple as a document stating whom to call, what I do not consent to under any circumstances, whom to treat as my next of kin, what my psychiatric and psychopharmacological history is, who my doctors are — would be a level of visibility and explicitness I’d be grateful for.”

Both Sneha and Manisha say that they are willing to go through the process of paperwork to get these Advance Directive documents in place. This is despite how long the process sounds — they both insist that it is important that the directive allows them to maintain control over their treatment. Manisha says she would do it despite not being clear on how the logistics of such a plan would come together. Sneha also mentions that she is willing to and will need to keep updating it, based on the new developments that take place in her illness, its treatment, and her own world view.

Stakeholders we spoke to were in broad agreement that the Bill seems to be a step forward. It has finally decriminalised attempts to commit suicide, and mandates that governments provide affordable, quality, geographically accessible mental healthcare. Vandana Gopikumar, co-founder of Banyan, a mental health NGO for women, sounded hopeful when she said, “I’m happy that the Bill takes into account the large service gap and mandates access to care as a right. This will address the needs of many who live in low resource contexts, who today have to travel long distances to access care, or often forgo treatment in the absence of a functional health and social care system.”

But while the Advance Directive is seen as greatly significant in recognising the autonomy of people for their treatment and care, some policy experts and rights groups are sceptical. Section 11 of the Bill allows doctors and relatives of a person to approach the Mental Health Review Board (MHRB) to revoke or modify the Advance Directive under certain grounds.

Jayna Kothari, lawyer and co-founder of the Centre for Law and Policy Research, argues that the power of Advance Directive is seriously undermined by Section 11. She says, "On one hand the whole provision is to give people with mental illness the right to autonomy and to recognise that they have capacity to take decisions for their own lives. If those decisions that they have made for themselves can be challenged, then you are basically saying that you can make a decision that we can revoke because we know better.”

The grounds on which other parties can challenge an Advance Directive include considerations of whether the person was well-informed, and had the capacity to take the decision. Manisha says, “No matter how distressed or incapacitated I might be at a particular time, I — and the people I trust — know what’s likely to help me and what’s definitely likely to make it worse.”
Kothari argues that in the case of patients who require treatment for other non-mental-health related illnesses, there is no such provision to challenge their decisions, so why is there a lack of patient autonomy in mental health care? “You don’t even raise these grounds for people in non-mental-health situations,” she says.

When asked how she would react if she learnt that her Advance Directive had been overturned, Manisha says, “I’d be unsurprised but bitterly angry. It’s a question of autonomy and self-determination. In some cases this sense of autonomy and self-determination is hard-won. I’d be shattered to realise that having a mental illness somehow translates to my ownership of my life not mattering.”

*Name changed on request.

The Ladies Finger is a leading online feminist magazine.

Sterilisation first option for the disabled

by Vince Chadwick
Jan. 2, 2013, 2:30 a.m.

PARENTS of women with intellectual disabilities are going straight for sterilisation procedures rather than ”existing and viable options” to help control menstruation and contraception, a national Senate inquiry has heard.  Associate Professor Sonia Grover, a gynaecologist at the Royal Children’s Hospital, told the hearing she was horrified when she received ”straight-out” requests for hysterectomies. She said increasing access to respite care, helping women manage their periods, and ensuring contraception is in place are options ”so these young women, if they are able, can enjoy a close sexual relationship without risks of pregnancy if they are not able to have a pregnancy and care for a child”.  Under Australian law, parents wishing to sterilise a child or adult children who cannot give consent for non-therapeutic reasons must apply to the Family Court or, in some states, a guardianship board.

However, Dr Grover expressed frustration with the therapeutic test. ”The question really is: Is this a procedure you would do on a non-disabled person?” she said. ”We should not be doing a sterilising procedure if we would not be doing it in somebody who did not have a disability.” The inquiry into the involuntary or coerced sterilisation of people with disabilities in Australia began in September as part of the government’s response to a series of calls from the United Nations for an end to non-therapeutic sterilisation without consent, regardless of disability.  The executive director of Women with Disabilities Australia, Carolyn Frohmader, said options such as family planning and menstrual management were not being explored because the sexuality of young women with disabilities was not widely accepted.

”Parents and other care-givers are not made aware of these or are discouraged from understanding their effectiveness,” Ms Frohmader told a recent hearing in Melbourne.  In one case from Queensland in 2010, an 11-year-old intellectually disabled girl (”Angela”) was sterilised after she began getting her period, which was heavy and irregular, at age nine. Contraceptive pills were ineffective, two gynaecologists reported she would benefit from the removal of her uterus, and a Family Court judge was satisfied less-invasive treatments had been exhausted.  ”I am not a doctor but I am the mother of a nine-year-old child and I found that case very problematic for a whole range of reasons,” Ms Frohmader said.

The inquiry has so far received just five submissions, including one from a parent explaining her wish to have her 27-year-old intellectually disabled daughter sterilised.  ”Her own life is not stable enough to support another life,” the parent wrote. ”Advocates who say she has the ‘right’ to have a child need to factor in her ability to be responsible for that child.”  The author said they had already raised three children, but at 54 did not want to raise their grandchild. ”Sterilisation of my daughter is one thing that I can ensure for her before I die, otherwise who will?”  The inquiry is receiving submissions until February 22 and is due to report on April 24.

http://www.naracoorteherald.com.au/story/1213079/sterilisation-first-option-for-the-disabled/?cs=7

Finally, a year free of polio

The dream of a polio-free nation has just crossed its biggest ever hurdle. India, which kicked off a mammoth drive in 1995 to make country polio free, will on Friday complete a full year without any polio incident being reported in the country.

The country reported its last case of polio on January 13 last year, from Kolkata in West Bengal. Polio endemic states such as Uttar Pradesh and Bihar too have recorded a constant drop in the polio cases from 2008 — with no case recorded in the two states in 2011.

“UN officials tell me that hopefully by early next year we shall be able to announce that India is finally free of polio,” wrote UNICEF brand ambassador Amitabh Bachhan last month. The milestone has been greeted with a round of applause. Bill Gates, co-chair of the Bill & Melinda Gates Foundation, congratulated Indian government for its efforts in protecting the children against this debilitating disease. But the celebration might have to be muted in view of the long road ahead for declaring India a fully polio free country.

“To be totally polio free, the WHO stipulates that there should be no case of paralytic poliomyelitis by wild polio virus in last three calendar years. So, if there are no polio cases by wild polio virus in 2012 and subsequent years we can call India has eradicated poliomyelitis in 2015,” explains Dr AK Dutta, head of the department of paediatrics at Kalawati SC Hospital, Delhi.

Polio is usually caused by wild polio virus — the virus that is circulating in the environment. And the polio vaccine is prepared by passing the same virus through various culture mediums. In some patients whose immunity is very poor, this vaccine virus passes through their gut and enters the environment. Once in open environment, it transforms into wild virus and infects other people. This is called vaccine derived paralytic poliomyelitis. And this poses a big challenge.

“Once wild polio virus is eradicated from the country, the major issue of concern is that of acute poliomyelitis. The cases are occurring even now and outnumbering wild poliomyelitis cases even in India. Once polio is eradicated there will be a need for injectable polio vaccine in the programme along with Diphtheria Pertussis and Tetanus (DPT) vaccine so that we can control vaccine associated and vaccine derived poliomyelitis,” says Dr Dutta.

Dr AP Dubey, head of the department of paediatrics, Maulana Azad Medical College (MAMC), Delhi, says, “The pulse polio programme has been very effective in minimising the polio cases. We have been able to curtail this menace only because of constant and excellent efforts of the government of India.”

Sounding a caution for young parents, Dr Vandana Kent, senior paediatrician at Rockland Hospital, says, “Once couples become parents, they should be aware about the vaccination schedules and they should get their children immunized on time against this deadly disease.”

Ankita Chakrabarty/ Zee Research Group
New Delhi DNA, Bombay : Jan 13, 2012

Voice of Courage

From initial denial, a long fight against the condition, to her final triumph – Reshma Valliappan talks about life after being diagnosed as schizophrenic

The dark mascara and unusual piercings reflect her rebellious spirit. But five minutes into the conversation and one spots other shades of her personality. For 30-year-old Reshma Valliappan, life changed when she was clinically diagnosed as schizophrenic. Now recovered, she talks about her over 10-year-long battle with the dreaded condition.  Before our conversation, the screening of a film based on her life is in progress at Mazda Hall, Dastur Primary School on Saturday. Directed by Aparna Sanyal, A Drop of Sunshine traces the problems that schizophrenics face in India through Valliappan’s story. Conducted in association with Connecting, an NGO works for suicide prevention, the film speaks of the tag attached to mental illness.

Each frame is filled with details from her life starting with her initial denial. “I was 22. I couldn’t accept it. I really did not even know what Schizophrenia was!” she says, “I was told I am suffering from a mental illness. It took me a while before I made peace with the fact.”  At that time, Valliapan was pursuing a Bachelors in Philosophy from Fergusson College. After a range of treatments – right from drugs to therapy, she got a sense of what was happening with her. In a world that already seemed delusional, dealing with the society’s close-minded attitude was the biggest challenge for her and her family. “When I was on the antipsychotic medicines, I still heard voices but I was too low on energy to even respond to them,” she reveals. It was then that she decided to get off the drugs. “I am not against medication. It’s a personal choice. But, for me giving up the medication made me fight harder,” she says.

Between bouts of complete insanity and hallucinations to violent outbursts, she started seeking solace in art. “Art was my catharsis. Alternative therapies helped a lot. It gave me a new lease of life,” she says. She remembers her father looking at her paint one day. “My paintings soon became a way of communication between my parents and me.”  The real breakthrough came when she decided to leave home. “I was tired of being around. I wanted to be out in the world – dealing with real issues. And my family let me do that. I would drive to Mumbai, sleep in cars. I did odd jobs like bartending. I even rented a room, stayed at a friend’s place but eventually I would always return home.”

Valliapan’s resilient spirit never let her down. But she was not making any headway in dealing with her condition. “One day, a friend advised me to do something that I had never thought of. She said: ‘why don’t you talk to the voices and find out what they want?’” The thought itself was overwhelming for Valliapan. “I remembered how when I painted, the voices would guide me. I knew I was symptomatic but I had to do it. I gave names to them. With the help of my doctor, parents, and friends, I learnt to differentiate between them and everything else,” she says.  Today, Reshma is still hounded by the voices. Ask that is what gives her strength too. "The power of vulnerability is huge. They say your biggest strength and weakness is the same thing,” she says. Her artwork, with bold strokes and vibrant colours – represents her strength. She paints for a living now. This year, she and a group of friends have come together to start ‘Red Door’. “We are trying to make people aware about this condition by going to unusual places and talking to people. I know there are many out there who need help. I can’t wait for them to come to us, so that’s why we are going to them,” she says.

Indian Express

Time to inflict pain on the terminally ill

How do YOU suggest we cut the deficit then? You’ll be asked this if you ever oppose a cost-cutting scheme, such as merging the sewer system with the library service or something. So here’s one answer, we could pay a bit less to ATOS, a company that receives £100m a year from the Government for assessing who should be cut off from disability benefit.  The method they choose is to interview each claimant, asking them a series of questions such as, "Do you look after your own pets?" Because clearly if someone can feed a hamster they’re capable of driving a fork-lift truck. Another is "Do you cry?" If you do, you’re probably told it’s all very well being depressed but there’s no reason why you can’t get a job imitating actresses who’ve won an Oscar, or hiring yourself out to appear at funerals to make it seem the deceased knew more people than they did.

During this questioning the interviewer taps the answers into their computer, which makes an automatic calculation as to whether the claimant loses their benefit. This is so much quicker as a method of assessing health than the old-fashioned way of examining someone.  Hospitals should follow this example. Instead of faffing about with X-rays and stethoscopes, the consultant could say, "Which do you prefer, pizza or a curry? Who would you rather have to dinner out of Fearne Cotton and Dermot O’Leary? OK, let’s see what the computer says – aah, you’ve got gallstones."

Maybe the plan is to turn the whole process into a radio panel show called "Fit on the Fiddle", in which claimants answer the questions from a panel including regular captain Gyles Brandreth. One man who might as well have done this was Larry Newman, who attended an ATOS interview with a terminal lung disease, when he could hardly breathe. So he took his medical records and ATOS ignored them, preferring their method of asking questions.  They decided there was nothing wrong with him so his benefit was cut, and a few weeks later, as the hospital attached a ventilator he’d have to wear permanently, with splendid jollity he said to his wife: "Still, at least I’m fit for work." He died a few weeks later, and I expect if his wife took him in again now they’d still say there was nothing wrong with him and send him for an interview to be a town crier.

Still, the cuts have to be made somewhere so I suppose it’s only fair that the brunt of them should fall on the terminally ill. But here’s where it gets complicated. The ATOS system has worked so well that in the past three years 160,000 people have successfully appealed against their decision. So from now on perhaps they’ll use a more reliable method, such as rolling two dice and anyone who gets eight or over loses their money. Or they could still call people in for interviews but do three at a time while the assessor lines them up and goes, "If dip dog shit, you are not it", and the loser has to crawl to the job centre.  The trouble is that these tribunals have cost £30m (and you’ll laugh at this bit), and that money is paid by the Government, out of taxes. So they still get paid the £100m, out of taxes, and all the mistakes are paid for out of more taxes.

It’s like a minicab firm that always takes you in the wrong direction, but you still have to pay them, then they charge you again to bring you back where you started. And to complete the analogy, on the way home they run someone over and shout: "If you can stroke a cat there’s nothing wrong with you", as the victim is carried into the ambulance.  So here’s my suggestion. On live television ATOS are called in for an interview by a panel of disabled people, who ask them to mime looking after their pet, then assess whether they’re entitled to still get £100m or have to go and get a proper job.

Mark Steel, The Independent

Gaming helps treat brain stroke victims

Spanish scientists have created a robotic machine that integrates with a gaming  system to rehabilitate people suffering from neuromuscular disability while making therapy fun

Fifteen million people throughout the world suffer from a stroke every year and 5 million are left with chronic disabilities. Researchers have designed a robotic gaming system for treating neuromuscular disability amongst these patients.  The patient will be able to enhance his or her arm mobility by means of a portable robotic device and a software platform with videogames for tele-rehabilitation, so that the doctor can carry out the online monitoring of these exercises through the quantitative results obtained from the games.

The ArmAssist project is currently testing in a hospital, to find out the degree of satisfaction of patients who have suffered a brain stroke. The project was initiated by FIK, a business initiative focused on research into the field of ageing and disability.

THE DEVICE AND VIDEOGAMES

ArmAssist consists of a mobile-based device that is connected to the user through a hand brace that records and measures the movements of the shoulder and the elbow. This mobile base is connected to a standard computer that links the movements carried out by the arm to comply with the demands of the videogames developed for the rehabilitation of the upper limbs. The exercises proposed for favouring the rehabilitation of the patient are of two kinds: evaluation and training.

The evaluation ones are short and which should be undertaken every day at the beginning and the end of the training session. These videogames train independently the range of motion, force, distance and of precision, so that the therapist can evaluate the progress of the patient.  For their part, the training games last longer. The objective is precisely to motivate the patient, training the arm over a longer period. These games also integrate a cognitive component in order to train also this aspect. Amongst these videogames, there are puzzles, memory games and card solitaire games.

REMOTE THERAPISTS

Using tele-rehabilitation software that this assistive arm includes, a link is also developed between the patient and the therapist, which enables training him or her in their homes, and more independently.  While the doctor can ensure the patient is doing the exercises correctly by using the computer programme with an Internet connection.

Mumbai Mirror Bureau mirrorfeedback@indiatimes.com

A long journey for blast survivor

MISSION IMPOSSIBLE: Chiraj Chouhan, 25, who rebuilt his life after suffering a special cord injury in the serial train blast on July 11, 2006. Photo: Special Arrangement

When 25-year-old Chirag Chauhan looks back over the last five years that changed his life, many emotions come to his mind. “It seems like a long journey,” he told The Hindu on the phone. Mr Chauhan was among the survivors of the serial train blasts on July 11, 2006 which claimed over 180 lives. That day he had left for home early when a bomb exploded in the suburban local at Khar Road station. His spinal cord was damaged due to the explosion and some particles are still embedded in his chest and close to the trachea.

Mr Chauhan, who dreamt of becoming a chartered accountant (CA), was doing his articleship then. He has made an amazing recovery. Wheelchair-bound now, he is a full-fledged CA working as a senior manager in the internal audit division of a private bank for one and a half years. He even drives the 20 minutes to his office in a specially designed car with a dual system which can be operated with his hands. He has little time for hobbies but could not resist driving to Lonavla, a hill station outside Mumbai, recently. “I wanted to see how far I could drive and it was a test for me,” he said. It was a fun trip with his friends.  Immediately after the terror strike, Mr Chauhan, like many others, spent long months in hospital; but he maintains he was optimistic from the start. In an emailed statement to all those who have kept in touch with him and followed his case, he quotes Winston Churchill, “Success is not final, failure is not fatal, it is the courage to continue that counts.” 

Despite his debilitating injures, he pressed on with his course and completed it on July 12, 2008. “To continue where others thought “It is impossible” — that’s one thing I dared to do,” he says. He lost his father when he was 18 and was faced with the prospect of looking after his sisters and mother, something he can proudly do now.  Mr Chauhan considered himself an average student and it was only in the tenth standard final examination that he managed a first class. His determination to do his CA led him to do his articleship and things were going well. “July 11, 2006, was a day like any other day for the rest of the world. I went to work in the morning and caught an early train back home as my work was over. I never thought in my wildest dreams that it would be my last train journey,” he says. 

It was for the first time that he and his family heard of “spinal cord injury.” “I am now termed as a paraplegic in medical terms,” he adds. The biggest problem initially that he had to deal with was the loss of freedom and the inability to carry out personal chores. Next came the total dependence on other people.  However, Mr Chauhan is grateful to his doctor Dr. Rajul Vasa who helped him become independent in doing routine tasks and made him practise using a wheelchair for three to four hours at a stretch. He had to undergo rigorous rehabilitation training and make extraordinary efforts. It soon struck him that being a paraplegic was irreversible. Many times he was plagued with the question, why me? “I had tons of questions but no answers.”

“I have been very optimistic from the beginning after my injury,” he remarks. To deal with his situation, he learnt to “live in the present” and soon realised that paraplegics have a normal life span. However, even after passing his CA, getting a job was tough. “One company after another rejected me only because I was paraplegic. Most of the companies overlooked all my education qualifications and concentrated on my only defect,” he says.Despite all this, Mr Chauhan bears no rancour towards anyone and does not blame the government. However, he is disappointed that the facilities for disabled people are very poor in this country and there is a huge lack of awareness about their problems and needs. He acutely realised the problems faced by the disabled only after what happened to him. People and governments should work against terrorism, he feels. There seems to be no looking back for this cheerful youngster who has fought a terrible injury and has come back to take life head on.

The Hindu