Drawing by Pallium India volunteer Anu Joseph

Palliative care is a personal kind of care.

It is provided in the home whenever possible. This means that the team gets to know the family, becoming part of their support system. It wasn’t long before we realized that children are highly affected when their parents become ill with cancer or other life-limiting diseases.

JMM Study Center, Mannanthala

Keeping this in mind, we are organizing a 3-day summer camp for children age 12-18 with parents who have had life-limiting diseases.

The event will take place from the 19-21 April 2012 in JMM study center, Mannanthala, Trivandrum, Kerala.

The organizers will provide personality development training, creative activities, entertainment and one day of outing to museum and planetarium. It will provide the kinds of activities that allow the children a precious opportunity to leave all their grievances behind for a few days and enjoy themselves.

Pallium India currently provides educational support for 150 children. Beyond financial aid for education, we also aim to see these young people grow up as responsible, confident individuals with good self-esteem.

Read one of the children’s stories below. (Note: names are changed for confidentiality.)

Let me introduce you to Archana, a bubbly 12-year-old who loves singing film songs and playing with her friends. Like other children of her age she used to go to school and dreamt of acquiring enough education to support her family one day.

Everything changed when her father Rajappan, 43, was diagnosed with cancer. A daily wage earner, he could no longer support his family, let alone find enough money for his treatment.

Poverty forced Archana to drop out of school. As it turned out, this was just the beginning of her troubles. Neighbours who were supportive in the beginning started turning up less often. Even her playmates in the neighborhood stopped talking to her due to misconceptions and myths regarding cancer.

Within a few months what seemed like a promising future for this school girl turned out to be a murky tunnel with no light at the other end.

Pallium India stepped in and provided funds for both Archana and her sister so that they could stay in school. The organization also assessed the home situation, and purchased a sewing machine for the family so that they could earn money from home.

In all, ways to help them to blossom into the little flowers they were born to be. 

We are honored and proud to announce that the Trivandrum Institute of Palliative Sciences (TIPS), the flagship program of Pallium India, has been named a World Health Organization Collaborating Center (WHOCC).

The Official Title: “WHO Collaborating Centre for Training and Policy on Access to Pain Relief”

This is a huge leap forward in the recognition of our model of palliative care for India and the rest of the world. The news was announced today in the March 2012 WHO Access and Control Newsletter.

Here is the news release:

TRIVANDRUM, Kerala, India – March 19, 2012 – Trivandrum Institute of Palliative Sciences (TIPS), the flagship program of Pallium India, a registered charitable trust headquartered in Trivandrum, Kerala, India has been declared a World Health Organization Collaborating Center (WHOCC). Dr Samlee Plianbangchang, Regional Director of World Health Organization, informed the organization in a message delivered on February 28, 2012 that the designation for a period of four years is for collaboration in the areas of “Training and Policy on Access to Pain Relief”.

“We are honored and pleased to receive this designation, which allows us to link up our work in the relief of pain and suffering in India to the national and international bodies that seek the same outcome,” said Dr. M.R. Rajagopal, chairman and founder of Pallium India and TIPS. “For too long, patients who needed pain relief and other palliative care services have been denied them due to outmoded bureaucratic red tape and other barriers. With the World Health Organization’s help, we envision a future in which all who need palliative care will receive it.”

Today in India, more than 99% of the needy — people with cancer, HIV/AIDS, and other diseases causing prolonged pain — have no access to pain relief. Twenty-five years after the World Health Organization (WHO) came out with a viable protocol for pain relief, oral morphine is still not available in the majority of hospitals in India. This is an essential medicine according to the WHO. Modern principles of pain management are not taught to medical students in all but a handful of the medical colleges in the country. Through this recent announcement, the WHO is showing its commitment to turning this situation around for India and the rest of the developing world.

In his message to Pallium India, Mr Willem Scholten who leads the “Access to Controlled Medicines” program in World Health Organizations headquarters at Geneva said, “Trivandrum Institute of Palliative Medicine is an example for other pain centres and policy makers around the world. Unfortunately, very restricted access to pain medicines is rather the rule than the exception, like it used to be all over India in the past, but Kerala shows that it is possible to improve.”

Pioneering work by the Indian palliative care community in association with the WHO Collaborating Center at Madison-Wisconsin has resulted in simplification of narcotic regulations in 14 Indian states. Kerala, where TIPS is headquartered, has particularly been far ahead of the rest of the country in this aspect. There, about 100 institutions stock and dispense oral morphine to the needy for use in the home setting. At least three medical colleges in the state impart education in pain management and palliative care. Kerala remains the only state in India to declare a palliative care policy. The result is at least 50% of the needy have access to palliative care.

Working towards improving access to pain relief in the rest of the country, Pallium India has successfully initiated development of palliative care centers in eight North and North-Eastern states over the last five years. Five of them are in Regional Cancer Centers. It continues to fund and train centers across India.

TIPS has its office in Pattom, Trivandrum, Kerala and its patient services based at the S.U.T Royal Hospital at Kochulloor, Trivandrum. It provides outpatient and home visit facilities from these bases of operation. The Institute works with volunteer-led community based organizations to provide weekly home visits to bed-bound patients. TIPS is also a training centre, conducting six weeks certificate courses for doctors, nurses and other professionals six times a year, as well as a ten-day foundation course for doctors. In addition, it conducts periodic volunteer training programs, as volunteers form an important part of the care team. The organization is also supported by volunteers around the world, and has a USA volunteer arm, Pallium India-USA, led by Dr. Jerina Kapoor.

“The newly designated WHO collaborating center at TIPS will work with organs of WHO, with Central and State Governments, with the Indian Association of Palliative Care and with other national and international agencies to improve access to pain relief for those in need in the country,” said Dr. Rajagopal. “Through these efforts, we will continue our goal of ensuring that all Indians are treated with respect, and that those with serious illness can live out their lives with the appropriate dignity they deserve.”

For more information, please visit http://palliumindia.org.

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Here is some of the news coverage it has received so far:

• Express Buzz: TIPS declared as WHO Collaborating Centre
• IBN Live: TIPS declared as a WHO Collaborating Centre

Help us spread the word by forwarding this to your email list, or by posting it on Facebook and Twitter.

Dr Twycross taking time to speak with delegates at the conference

Anger in Compassion: Dr Robert Twycross addresses IAPCON 2012

Many of us have come to see anger as a negative emotion. But, can it have any positive effect? Let us tell you how the question came up.

Dr Robert Twycross is the palliative care guru of India. He taught almost all the first generation palliative care physicians in India and through them, the subsequent generation. (See the writeup about our Bruce Davis Training Centre to see how his pioneering work continues to inspire.)

He has retired now, but came back to India and took part in the annual conference of the Indian Association of Palliative Care (IAPCON 2012) organized by Dr Arundhati Chakraborty, held in Kolkata last month. In a moving event, his students gave him a plaque of honor. We strongly recommend that you take half an hour to see and to listen to his entire lecture.

If you can’t spare half an hour (we pity you!) here are some gems from his talk:

1. You need to be angry. Do you not have enough to be angry about?  

• 99% of the needy in India do not have access to pain relief;
• Most of some 300 odd medical colleges in the country (except for some five or six) fail to teach pain management and palliative care.

These facts alone may make “anger in compassion” well up in you, forcing you in to action. If so, let that anger be a catalyst for change!

2. It’s time to redefine what constitutes a medical emergency.
It should include, for example, someone with a limited life span who has not had a good night’s sleep in three months.

3. Miminise formality, maximise humanity.
The bigger your organization becomes, the more formal it becomes. It takes effort to retain humanity.

Dr Twycross ended his lecture by quoting Pallium India newsletter of March 2009. He asked all the young people in the audience to take down the quote, put it on a plaque and to keep it on their wall:

“We should not permit the growth and routinization of palliative care to take away its soul. It will be a happy day when palliative care reaches most of the needy in the country; but it will be a sad, sad day, if in the process palliative care comes to be delivered just with the brain, and the ‘eyes of the heart’ do not open any more!”

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.

Dr V Jayaprakasan (right) is a retired Professor and Dean of Veterinary Sciences of the Kerala Agricultural University.

He came across palliative care when his dear wife Sushama got cancer of the pancreas.  She is no more now, and his work in Palliative Care is the Taj Mahal that Jayaprakasan (JP as he is fondly called by the team) has built for the departed Sushama.

Welcome, JP, and thank you for all that you are doing for people in pain and suffering.

We thank Alpheusmedia, The Lance Armstrong Foundation, Anne Nagelkirk and colleagues for a precious Christmas present! A three-minute video on Pallium India: