June 2011 Newsletter

2011 June 30
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Edinburgh Skyline“He understood the leprosy of the leper, the darkness of the blind, the fierce misery of those who live for pleasure and the strange poverty of the rich,” said Dr. Mike Basler, quoting Oscar Wilde (De Profundis).

He spoke these words at the annual British Pain Society meeting, held in Edinburgh, Scotland. Mike is the driving force behind the formation of a newly formed Special Interest Group (SIG) on Developing Countries.

This new group met during the conference, on June 23, 2011, filling the hall. He reminded the participants that while there is misery in the developing world, there is a different kind of misery in the developed world and that there is more than enough for mutual learning. The SIG went on to discuss plans of action.

Best wishes Mike and team!

Following the session, several Indian doctors got together, all with the common desire to help out in India – Liza Tharakan, Senthil Vijayan, Hans Mathew, John Vinu Edwin Sabita Sreevalsan and others. Thank you Liza, Senthil, Hans, John and Sabita. There is more than enough to do in India. We need all the help that you can give.


Pallium India successfully launched the SHARE TO CARE program on June 20, 2011.

Read the news report about the launch event from Yentha.com below.

Pallium India along with YMCA Trivandrum, Ebenezer Palliative Care Unit and the Rajeswari Foundation launched the “SHARE TO CARE” program in YMCA hall. It’s aimed to give a share of your joy to the needy when you celebrate or observe a birthday, an anniversary or any important event in your life.

Pallium India fights for the needs of the millions suffering in India who are in need of pain relief and palliative care. The aim is the improvement of the quality of life. When cure is possible it supports the patient through curative treatment, minimizing suffering and when cure is difficult the emphasis is to care for improving the quality of the life of both the patient and his family.

Dr. Ramdas Pisharody, Principal, Medical College was the Chief Guest of the function. Dr Vinay Jain, founder of JIV Daya Foundation, inaugurated the function. It was followed by a signature collection pledging to give a share to the needy when one celebrates or observes a birthday, anniversary or other important event in life. This pledge will support provision of pain relief and palliative care to the needy.

Pledge online here: palliumindia.org/sharetocare

This pledge will support provision of pain relief and palliative care to the needy. If you’re in any doubt about the difference caring by sharing can make, take a look at just a few examples from our blog:

Pallium India-USA at Sevathon 2011

In Silicon Valley, California, we’re lacing up our running shoes and stretching our calves to take part in the 2011 Sevathon, a July 17 walkathon/5K/half-marathon through the India Community Center that raises funds for a number of nonprofit organizations.

All pledges on THIS PAGE will go to Pallium India USA. Spread the word among family & friends!

Come and enjoy delicious Indian food, live music & vibrant dance performances!

Sunday 17th July 2011 – 7.30am onwards
Baylands Park, Sunnyvale, CA
Walkathon: 5K/10K/Half-Marathon
Download the flyer (pdf)

We look forward to seeing you at Sevathon 2011!

Congratulations, Kavya!

We congratulate Ms Kavya G Nath from Kottayam district in Kerala for her distinguished success in her Secondary School Leaving Certificate (SSLC) examination with 98% marks.

Kavya wrote to Pallium India, “My father’s death five years had destroyed my family in every sense. I cannot describe the comfort that we got from the support and love that you had extended to my family. I cannot thank you enough.”

Kavya wants to become a doctor. She will now have two years of “plus two” before she can attend an entrance examination to secure a seat for her medical studies.

And friends, we shall together support her in her choice of profession, if that is what she still wants to do at the end of these two years. Pallium India’s program is to continue support for education till the students’ studies have come to a natural conclusion and the person has started to earn.

At the “Share to Care” function on the 20th of June at Trivandrum, Kavya received a memento, a merit certificate and a cash award.

Congratulations, Kavya! Pallium India is privileged to have the opportunity to walk with your family.

Life Before Death

The “Life Before Death” series continues, with a short video coming out every single week for the next year. This documentary series highlights the global crisis in untreated pain and the dramatic, life-changing effect palliative care services can deliver to patients and their families around the world.

A feature film will be released in late 2011 followed by a one-hour TV documentary. The production team visited Trivandrum and filmed Pallium India at work. In total, they filmed in 11 countries including India, Uganda, Singapore, Canada, China, USA, South Africa, Australia, Georgia, Ireland and Hong Kong, exploring a diverse range of cultural perspectives on pain, death and dying.

The project is presented by the Lien Foundation and produced by Moonshine Movies. It is also supported by the International Association for the Study of Pain, The Mayday Fund, the Union for International Cancer Control and The Institute for Palliative Medicine at San Diego Hospice International Programs. Pallium India would like to congratulate Mr Mike Hill and team from Melbourne, Australia for their excellent contribution to pain and palliative care advocacy.

For more information and to view the entire series, visit the Life Before Death website…

“Stock-Out Pain”?

We suggest that a new term be created to highlight a major injustice. People like Dr Anne Merriman and colleagues have worked for decades to improve opioid availability in Uganda and yet, for trivial reasons, there is no morphine for those in pain.

In the May 2011 Cairdeas newsletter, Dr Mhoira Leng describes how they had to scrounge for money to buy morphine at Mulago Hospital in Kampala because the Ugandan Government was ‘reorganizing’ its supply system.

Despite all the millions that go into Africa for health-related aid, there is no money for morphine?

Can you imagine the agony of someone whose excruciating pain has been relieved so easily by morphine and then is told one morning without any warning:

“Sorry, we have run out of the medicine. Sorry, we do not know when we will get some more. And, no, we have no substitute for it.”

As a palliative care worker, I feel so very privileged to have the opportunity to relieve someone’s pain and suffering so easily. Then we run out of morphine.

I can tell you as one who knows, that it is certainly not a pleasant experience, having to explain it to person after person. And it is not easy to forgive the insensitivity of human beings that causes that stock-out to happen!

A Palliative Pioneer Retires

Reverend Sister Merlin, one of the pioneers of palliative nursing in India and an active worker with the Pain and Palliative Care Society at Calicut from its beginning, formally retired from Kerala Government Service on 26 May 2011.

She was the winner of the prestigious National Florence Nightingale Award for Nursing Personnel in 2008, which she had received from the President of India, Prathibha Patil.

Best wishes for the new phase of your life, Sister Merlin.

You may have formally retired from Government service, but we have no doubt that you will be active in palliative nursing for many many years to come!

Congratulations, Poonam! We are Proud of You!

Pallium India is proud to report that as part of its “We Can, We Should, We Will Conquer Cancer” campaign, the American Cancer Society (ACS) has selected Ms Poonam Bagai as one of two Indian Global Cancer Ambassadors.

Poonam, herself a cancer survivor, is President of CanKids and vice-chair of Pallium India. Her selection as a Global Cancer Ambassador is based on her dedicated work in these areas over the last few years.

During June, along with other select Global Cancer Ambassadors, she will travel to New York to be trained by ACS on meeting with UN mission representatives and decision makers, and on advocating to make cancer a health priority in India and globally.

ACS’s training sessions are in preparation for the UN High-level Meeting on non-communicable diseases (NCD) prevention and control, which convenes in September 2011. She will also meet with the Indian Mission to the United Nations to put forward specific requests to be presented at the Meeting.

The UN High-level meeting will bring together heads of state and other high level political figures to discuss NCDs (cancer, diabetes, cardiovascular disease, chronic respiratory disease) and create international policy guidelines to address NCDs. The Global Cancer Ambassadors are integral to implementing these guidelines.

A grieving mother speaks out

What is it like for a mother when she loses her only child, born after her ninth fertility treatment? In the UK’s Sunday Times Magazine, Sally Ayles describes a day in her life, six months after losing 18-month-old Katie to meningitis.

Sally found support from The Compassionate Friends, a forum for bereaved parents. In the UK’s Sunday Times Magazine, Sally writes:

“TCF is for bereaved parents, by bereaved parents, and I feel lucky to have found them just nine weeks after losing Katie. Everyone in my old life has their child except for me and I need it so I know I’m not alone. People write about that day’s challenges, the bad days (every day is bad, but some, like Mothers’ Day, Christmas, anniversaries of death, birthdays, are even worse). I’ve learnt that it doesn’t matter how old your child was — stillborn, 18 months, 10, 20, 40 — it’s the same loss of your future, your hopes and dreams. A child isn’t meant to die before a parent. It just shouldn’t be.”

Read the full article on our blog…

Beyond the Boundaries of Geography, Color, Age, Sex…

Some things, like pain, know no borders. The reaction of insensitive doctors to someone else’s pain is another.

Ruth (not her real name) had grown up in USA. After she lost her husband to cancer, she migrated to Thailand, and worked as a Professor. Unfortunately, she had a fall, and there followed physiotherapy which included some form of electrical stimulation.

One day something went wrong. An accidental high strength of current, her leg shot up, out of control and she had agonizing pain.

What followed was a nightmare – doctors refusing to believe that she had pain, eventually finding that she had damaged nerves (during the abnormal muscle contraction following the electric current, she believes) and yet would not, or could not, relieve her pain.

Eventually she got to the pain management team at Siriraj Pain Center in Bangkok, run by Dr Pongparadee Chaudakshetrin, where she got some relief, enough to start working again. She still has to take opioids, along with physiotherapy and complementary therapy, but now she is earning for herself and building herself a life again.

There has to be a way by which stories like hers should be common knowledge to medical students and doctors. That would be at least of as practical educative value as the latest in the neuroscience of pain!

Palliative Care Neglected Worldwide: Tens of Millions Face Death in Agony

In their 128-page report, “Global State of Pain Treatment: Access to Palliative Care as a Human Right“, Human Rights Watch (HRW) highlights the fact that tens of millions of people worldwide are denied access to inexpensive medications for severe pain.

HRW comprehensively detail the failure of many governments to take even basic steps to ensure that people with severe pain due to cancer, HIV, and other serious illnesses have access to palliative care, as a result, millions of patients live and die in great agony that could easily be prevented.

Some quotes From Patients and Healthcare Workers Interviewed by Human Rights Watch:

“Before I came [to Kenyatta National Hospital], I couldn’t eat or breathe well [because of the pain]. Now that I have been given medicine [morphine], I can eat and breathe. I couldn’t sit down, but now I can. I had pain for more than a month. I told the doctor and nurses [at another hospital] that I had pain. It took too long to get pain treatment… Here I got it immediately and started feeling well again.”
– Christine L., an 18 year-old woman with Breast Cancer, Nairobi, Kenya.

“I would sleep maybe an hour and a half per night. I could take any number of sleeping pills [without effect]. With morphine, I can relax. This place [the palliative care unit] is heaven-sent…”
– Shruti Sharma, Hyderabad, a breast cancer patient, India

“Cancer is killing us. Pain is killing me because for several days I have been unable to find injectable morphine in any place. Please, Mr. Secretary of Health, do not make us suffer any more.”
– A classified ad placed in El País newspaper in Cali, Colombia, on September 12, 2008, by the mother of a woman with cervical cancer

“I wanted to fall head down and be dead right away so it wouldn’t hurt anymore.”
– Vlad Zhukovsky, a cancer patient from Ukraine, describing a failed suicide attempt

“We have no pethidine, no DF-118 (dihydrocodeine) and no morphine…. We have children here with advanced HIV; some are in severe pain. The pain management for children with advanced HIV is not enough.”
– Nurse, Bondo District Hospital, Kenya

“Doctors are fearful of everything to do with opioids.”
– Oncologist, Jordan

Stars and Celebrities Advocate for Palliative Care

Megastars from Malayalam movies, Bharat Mammootty, Mr Innocent, Mr DileepMr Biju Menon and many other celebrities got together to advocate and fund–raise for palliative care at a function at Lulu International Convention Centre in Thrissur.

The event, on June 11th, was organised by Alpha Pain Clinic, a palliative care service founded by Mr KM Noordeen.

Thank you Stars – you have always supported Palliative Care!

All of us in the palliative care scene, and many people in the State who have been supported with your help, will forever remain grateful to you.

Pain Relief & Palliative Care: A Basic Human Right!

Human Rights Watch and the Open Society Foundations came together with six other international organizations, including Pallium India, to host a side-event during the recent 17th Session of the United Nations Human Rights Council in Geneva.

The Objective? A Human Rights Council resolution declaring: “Access to pain relief as a human right.”

Dr Tabaré Vázquez, an oncologist and the former President of Uruguay, was the star of the show.

He is a champion who, while President, took such stern anti–tobacco measures that the cigarette company Philip Morris sued the Uruguayan Government in the name of an International Free Trade Agreement.

Indeed, the President was interfering with the tobacco company’s fundamental right to kill more people!

During his opening address, Dr Vázquez said,

Just as access to Health care should be a basic human right, so should access to Palliative Care be, as an integral part of it.

One Month Certificate Course in Palliative Care at MNJ, Hyderabad

An invitation from MNJ Institute of Oncology & Regional Cancer Centre, Hyderabad to the One Month Certificte Course in Palliative Care for Doctors, Nurses, Social workers and Volunteers.

This one month course will be conducted by MNJ Institute of Oncology in collaboration with INCTR and Pallium India.

This is an opportunity to learn managing chronic pain, difficult symptoms, difficult issues around end of life care and communication skill training.

Course dates: July 4th 2011 – July 30th 2011

Download course information and application form here…

For more information, contact R Vineela: mnj.palliative@gmail.com or call 09177238901

Memorial Service for Val Hunkin

June 20th 2011 saw a memorial service for our dear departed friend Val Hunkin at St Just in Roseland Church, Cornwall, UK.

Val Hunkin had taught a whole generation of emerging palliative care professionals in India, supported by Bruce Davis Trust.

The church was full. There were 26 MacMillan nurses, Val’s family and numerous friends. Dr Robert Twycross came all the way from Oxford.

There were tears in many eyes as her many friends whose lives she had touched, spoke about the wonderful person Val Hunkin was.

Dear Val, it is not easy to let go. But we have to. You taught us how important it is. Rest in peace!

Read more tributes, on the blog…

Parting Shot

“I never cease to be amazed at the information coming from the Pallium newsletter. Thank you all. God bless your work,” writes Dr Anne Merriman, the palliative care pioneer of Sub-Saharan Africa.

Dr Liliana De Lima, executive director of International Association for Palliative Care says, “Your newsletter is very good. It has a certain quality; as if someone is personally talking to you.”

Professor David Clark, who founded the International Observatory for End-of-Life Care, wrote to say that he missed getting the newsletter when he changed his address–and that he wanted to make sure we had the right one for him.

And Pallium India’s own vice-chair Ms Poonam Bagai sends a quick email, “Did you appoint a communications officer in Trivandrum? The website and newsletter are brilliant.”

No, we have no communications officer! The website and the newsletter together cost NOTHING except precious time donated by volunteers.

Congratulations and thank you, Rakesh Menon, Sunshine Mugrabi, Supten Sarbadhikari and Jayasree Jayachandran for your precious input and thank you Binod for donating the site.

And let us pledge to remember that the website and the newsletter mean nothing if they fail to help improve access to palliative care for the needy.

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