On Saturday, January 28, Pallium India-USA and the community of Silicon Valley, California were honored with a special guest.

Pallium India chairman Dr. M.R. Rajagopal gave a talk to a full house at the private home of Dr. Jyoti Lulla, a well known and respected Saratoga physician and community member.

The event, organized by Pallium India-USA, was well attended by many physicians, healthcare workers, Silicon Valley executives and engineers, and others who wished to learn more about the work Pallium is doing in India.

Pallium India-USA Volunteers

Dr. Jerina Kapoor, chair of Pallium India-USA introduced Dr. Rajagopal.

Dr. Rajagopal’s hard hitting and at times emotionally intense talk took on the serious problem of suffering and pain relief in India.

He told two stories: one of a poor woman, Sangeeta, whose mother was dying of cancer. Her own future was foreclosed on as a result of the impoverishment created by the absence of an adequate medical and social system. The second story was of a wealthy man, Mr. Das, who nonetheless was traumatized by his doctors’ insistence he undergo needless life-extending treatments.

Dr. Rajagopal challenged the audience to think about and plan for their own future.

“Most of us won’t have the good fortune of an instant death,” he said. “The majority will have a prolonged decline.”

A lively and passionate discussion followed his presentation. The quality of the talk was a sure sign that positive change is possible when it comes to caring for the seriously ill and dying around the globe.

In all a very successful event.

There are many misconceptions about opioids and their use in palliative care.

A recent article in The Hindu about a palliative care unit in Bangalore goes a long way towards debunking many of them.

The article, headlined “Leading gently into that good night,” starts off with a story of a female patient in the Palliative Care Unit of the Kidwai Memorial Institute of Oncology, who is dying of cancer.

“I want to live to see my daughters married. Who will take care of my children if I die?,” asks Gowramma Amaresh even as she chokes on the last few words, overcome by emotion.

She is one of the thousands of patients seen at this State-run institution, and, like so many others in India, is at a point where cure for her disease is no longer possible. Unlike 99% of the Indian population in need, however, she has access to appropriate pain care.

As Dr. Nagesh Simha, Medical Director of Karunashraya and chairperson of Bangalore Hospice Trust that runs the centre explains in the article, the lack of access is “because of bureaucratic red tape in the procurement of morphine.”

The article goes on to explain: “Palliative care starts with managing severe pain and the most effective method is administration of oral morphine. Only a few hospitals and non-governmental organisations (NGOs) in Bangalore have palliative care units.”

Perhaps most notable, the article includes a graphic that illustrates some of the most common myths about morphine, such as that it is addictive, or that it should only be used for terminally ill patients.

In all, a good addition to the media’s increasingly positive coverage of palliative care and opioid use.

Read the full article at The Hindu…

On the 13th of January 2012, India completes one year without a single report of wild poliomyelitis!

Tremendous achievement indeed!

Apologies for bringing in unpleasant thoughts to celebration time. But do let us spend a moment to think how India will treat the survivors from previous years!

Read more in the Hindu…

The MBBS will be replaced by a 3-1/2 year course leading to a BSc in Community Health Care.

The graduates are expected to serve at the sub-centres as a link between the nursing auxiliaries/public health nurses and the doctor at the Primary Health Center.

Dr E Divakaran, Director, Institute of Palliative Care, Thrissur proposes to present various palliative care training programs in the country at the forthcoming annual conference of Indian Association of Palliative Care at Kolkata on 10-12 February, 2012.

He requests information on all training programs in India.

Please oblige by submitting details using the online form – Deadline: 31 December 2011

SUBMIT NOW »

It will help your institution by attracting candidates and more importantly, it will help candidates seeking training.

The single parent who can no longer earn a living because there is no one else to look after the boy?

Please take a minute to read an article from the New Indian Express of 16 September 2011:

Care from a mother’s heart

Could it be sheer coincidence that we came across a 13-year-old spastic child Arun  G Raj at Panathura, near Kovalam, and perhaps the most personal book by Arun Shourie on his spastic child, the same day?

The answer eludes us, but seeing Arun and his absolutely devoted mother Ajitha leaves us with the same question Shourie asked – ‘Does He know a mother’s heart?’, the title of his book.

Confined to a brick-walled room, that is so dark that one has to squint to see the twisted body of a teenager on the floor, Arun looks up at the light streaming in through the open window. Then suddenly you realise that he was responding to a crow crying on the tree outside. The crow stops and he loses interest.

His lips move, but you don’t hear a thing.

At an age when most children of his age would be devouring Harry Potter, listening to heavy metal, gulping down burgers and hot dogs and generally hanging out with friends, all that Arun does in that dimly-lit room is explore the walls of the room with his palms, check out the texture of the bricks. And that too from where he lies on the cement floor.

Arun cannot walk. He cannot stand. And he cannot sit without help. With his arms and legs too thin to carry his weight, it is his mother Ajitha who carries him around.

“He was a much healthier child before. He had this beautiful bonding with his father and the duo even used to play little games together. And whenever his father asked for ‘umma’, Arun used to shower him with kisses,’’ recalls Ajitha.

It is all past tense, for Arun lost his father, Raju, four years ago to a fatal kidney disease. While Arun’s cerebral palsy does not let him comprehend the most simple things in life, the pain of parting was something the soul could not deal with. The playfulness stopped, so did the ‘ummas’. He lost interest in food too, for a long time.

But while Arun Shourie embarked upon a very personal journey to find logic and reason for extreme suffering, Ajitha has made life easier by accepting the pain. “Looking back, I think God might have made me choose the nursing profession so that I would be able to look after my child. He might have known such a child was on its way,’’ she reasons.

The sea roared, and the waves crashed with such fury against the granite boulders outside that little house, that one was left wondering whether nature itself was going wild at the unfairness of it all.

Ajitha knew something was wrong the moment the baby was born. He did not cry, not even when the nurses slapped him. When he did not suck milk, he was taken away for further investigations. They found a clot in his brain. From then on, it has been a long, long, relentless fight for Ajitha. She faltered when her husband died, but with an elder sister Suprabha, who looks after two headless families with her meagre salary, Ajitha has managed to hold on.

The death of another sister, almost at the same time as that of Ajitha’s husband’s death, robbed the families of a traditional source of income. “We used to spin coir here. But now with Suprabha working as a home-nurse and the younger generation moving away to other professions, we could not continue it here. And I cannot possibly leave him and go for work,’’ says Ajitha, who has no complaints about life – neither hers or her son’s.

Some good samaritans help the family, Pallium India supplies diapers worth ` 800, while the cost of medicines and transportation for the frequent hospitalisations is met by the SBT.

Yet, the sea raged on and on, venting out its anger on the stony shores. Maybe that was what Arun Shourie was trying to do as well.

To add to what Reema Narendran says in the article, the boy needed to see his doctor regularly to keep his convulsions under control and for the myriad ailments that he is subject to. He could have free consultations in the Government Hospital, but with his condition being what it is, it was impossible for them to handle the hours of waiting in the crowded hospital corridor that would be necessary.

A kind pediatrician offered to see him at her residence free of cost in the evenings, and that was such a relief for Arun’s mother; but then Government of Kerala banned private practice by doctors in Government service, and the pediatrician no longer wanted to risk being seen seeing patients at home.

Fortunately, at this time, Pallium India’s TIPS found him and started giving him home visits.

Now our doctor, usually the pediatrician in our team, visits him periodically. We provide him not only his diapers, but also all his medicines free of cost and a monthly food kit.

But, how many tens of thousands of children and families like him are denied any care in our country?

In preparation for next month’s UN Summit on NCDs, the Indian Government’s Ministry of Health & Family Welfare and WHO India organized a 2-day National Summit on Noncommunicable Diseases, August 23-24, in New Delhi (press release). More than 200 delegates from various fields related to NCDs attended the meeting (programme).

During the inaugural function Mr RK Srivastava, Director General of Health Services, mentioned palliative care as one of the target areas of his department.

Minister for Health & Family Welfare, Mr Ghulam Nabi Azad, announced his ministry’s plans to launch home visit program for bed-bound patients in 100 districts in the country.

Our collective action is bearing fruit!

The Institute made remarkable progress including amendment of the narcotic regulations of the state of Andhra Pradesh and starting of a Pediatric Palliative Care Fellowship course.

And, as one more giant step forward, they have now been successful in working with the Government of Andhra Pradesh which created a full-fledged Department of Palliative Medicine at MNJIO.

This is the sort of thing that we all have always wanted – integration of Palliative Care into the Government’s health care system.

Congratulations, MNJ team and partners!

“Outsourced: Clinical trials overseas”: As US pharmaceutical companies move their operations abroad, India has become a testing ground for trial medicines. – Al Jazeera’s Fault Lines

The Palliative Care community in India has always stood for ethical medical practices.  Let us hope that we become in no way any part of any exploitation of patients in the name of research.

But wait a minute. We are by no means condemning research in India – whether it is national or international. Pallium India does do its share of need-based research – mostly to do with social research on issues pertaining to palliative care.

As Jawaharlal Nehru said, because we are a poor country, we cannot afford not to do research. But we certainly condemn any exploitation of the poor and the illiterate in the name of research.

Unreported World's Seyi Rhodes at the Nalgonda leprosy colony

Broadcast recently in the UK on Channel 4 foreign affairs series Unreported World, India’s Leprosy Heroes, highlighted the problem of leprosy in India. The report reveals the numbers of new cases in some areas could be much higher than previously estimated, despite the Indian Government’s claim that the disease has been eliminated.

Reporter Seyi Rhodes travelled with ‘local hero’ Vagavathali Narsappa from Shanti Nagar colony in Ranga Reddy District, Andhra Pradesh to the Niani Leprosy Hospital, Allahabad, Uttar Pradesh. Along the way meeting other leprosy sufferers and confronting the stigma that surrounds the disease.

• Watch the promotional trailer
• In the UK? watch the FULL show on Youtube/4oD
• Outside the UK? listen to the podcast below [mp3]:
  
• Interview with local hero Vagavathali Narsappa & video report from Niani Hospital
• Interview with producer Richard Cookson & The Guardian: India’s hidden disease

So, has leprosy really been eradicated, and are we only seeing the residual problems from earlier incidence of the disease?

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