September 2019 Newsletter

2019 September 2

Dear Friends,

It is 11 years since Kerala government declared its palliative care policy. On the 8th and 9th of August 2019, under the able leadership of Kerala’s former chief secretary Shri Vijayanand IAS, the government initiated a review of the policy.

Well-begun is half done. (Maybe a bit more than half, really.) A process that started with the two-day discussion has completed the first phase of the activity. A meeting held on 27 August 2019 has approved of the draft document to be submitted to the Government. As the Hon Health Minister Smt Shylaja Teacher and the Principal Secretary Dr Rajan Khobragade have taken personal interest in the matter, we do expect speedy action.

Thank you, Dr Deepak Varughese and Ms Shriya Singh, for doing much of the tedious drafting work. Thank you, everyone concerned from across the state for undertaking this task, and thank you Shri Vijayanand. Your leadership made all the difference.

Improving accessibility and inclusion

“Usually we [the deaf community] are excluded in these kind of gatherings. Thank you very much Pallium India for keeping accessibility standards in your programme” – Shaliny

“Full inclusion is need of the hour, thank you Pallium India for your efforts to start full inclusive programmes.” – Sandhya

“I have attended many programmes on different platforms and most of them were not accessible for me. Being a deaf person, my language is sign language and it is the medium of communication for me. Thank you Pallium India, you have shown how to include marginalised community like us. I hope this initiative will have a positive impact in the society” – Vinod

“I think the decision of Pallium India to make use of sign language interpreters in your programme is a path breaking decision and it will enhance the awareness of deaf population on various topics.” – Preema

“I am getting old now, this event is beneficial for me to take care of myself and my family. The prime concern we are facing is the issue of accessibility but in this event Pallium India facilitated Sign Language interpreter so we felt we are equal. The Discussion there was informative and well organised.” – Jayaprakash

These were some of the feedback we received from the people with hearing impairment who attended our event ‘Life and Death with Digni-tea‘ on July 7, 2019 at Trivandrum. As part of our ongoing efforts to improve accessibility and inclusion in our programs, we had arranged a sign language interpreter for the event.

Thank you, Vinayachandran, for interpreting this event voluntarily and also for offering to support our future programs.

Read more about the event: Life and Death with Digni-tea

The two opioid crises

Close on the heels of multi-million settlements by Oklahoma state with the pharma giants Purdue Pharma (270m) and Teva Pharmaceuticals (85m), comes the court verdict which orders Johnson & Johnson to pay a fine of US$ 572m which would go towards treatment of opioid addiction. Please see the report: Opioid crisis: Johnson & Johnson hit by landmark ruling

Much has been written and spoken on this subject, and most of it has been one-sided. But not the reports by Sarah Varney, based on the opioid situation in India.

Please read: How big pharma is targeting India’s booming opioid market and the second part, In India’s Slums, ‘Painkillers Are Part Of The Daily Routine’

The articles talk about both sides of the coin – the twin-crises: suffering and death by addiction on the one hand and the other opioid crisis of untreated pain in much of the world, on the other.

Patient get-together on World Hospice and Palliative Care Day 2019

This year’s World Hospice and Palliative Care Day is on October 12, 2019.

The theme for this year’s palliative care day is: Palliative Care: it’s My Care, My Right.

The theme My Care, My Right aims to communicate that palliative care can be demanded by the public – and that, together, every person impacted by a life-limiting illness can influence their policy makers to prioritize palliative care financing under Universal Health Coverage.

To know more about World Palliative Care Day, please visit: http://thewhpca.org/about

Patient Get-together at IHMCT, Trivandrum

Every year, Pallium India commemorates World Hospice and Palliative Care day by taking the people we care for (including their families, of course) for an outing to a local amusement spot, beach, museum, zoo, park, etc. Many of these people are denied opportunities to see beyond the four walls of their houses and they cherish the memory of these fun-filled days and eagerly await the next one.

This year Pallium India is organizing a get-together of patients and their family members on 12th October 2019 at Institute of Hotel Management and Catering Technology (IHMCT), Kovalam from 9 a.m to 4 p.m. This program is being arranged with the enthusiastic support of the staff and students of IHMCT. We expect around 450 people to take part in it.

You can help!

We request well-wishers to donate so that this day can be enjoyable for the participants. Click here to make a donation. Please add in the ‘Notes’ that your donation is to be used for World Palliative Care Day activities.

Contact: Babu Abraham +91-9746745502

Food Festival 2019

Please visit and support Food festival 2019 – home made food of all kinds prepared by Pallium India’s volunteers, staff and well-wishers to raise funds for palliative care activities.

Venue: Canara Bank, Spencer Junction, Trivandrum

Date: Oct 4 & 5,2019

Time: 10 a.m. to 6 p.m.

Contact: +91-9746745502

Please visit and support us!

(Click on the image to read the notice in Malayalam.)

 

Abstracts are invited for IAPCON 2020, Guwahati

27th International Conference on Palliative Care (IAPCON 2020, Guwahati), is scheduled from Feb 14th to 16th, 2020 with pre-conference workshops on Feb 13th, 2020 at Guwahati Medical College, Guwahati.

The theme of the Conference is “Entrust, Engage & Empower”.

Abstract submission is now live. Last date: Sep 30, 2019. For guidelines, please visit: http://iapcon2020.com/abstract_submission.html

For more information, please visit the conference website: http://iapcon2020.com/index.html

Obituary

Vijayakumaran Andoor

The palliative care scene in Kerala has lost a much-loved and loving volunteer and activist with the demise of Mr Vijayakumaran Andoor on 28 August 2019.

In the early years of Pallium India’s work in Trivandrum, he joined us as a volunteer and later, took over as treasurer for many years. But more than the official positions, he became a friend to many people in suffering and to a lot of our benefactors, he was the compassionate face of Pallium India. His death came as a shock because it was so sudden; he had enjoyed good health till an aortic aneurysm ended his life in a matter of a day or two.

Our thoughts are with his grieving wife, son and daughter.

Aji and Preetha make a donation for flood relief

Kerala faced floods and landslides again, a year almost to the date after the huge calamity of 2018. Not as much of destruction as last year, perhaps; but that is little consolation for those affected – the families of over 100 people killed, more than 60 missing and about 100,000 displaced.

We are doing what we can, but what most of us do pales into insignificance when we think of initiatives like these:

Aji Kattakkada and Preetha Thonnakkal are two people who can smile as they face almost any adversity – they are Pallium India’s fellow-travelers and trainers, both paraplegic and wheelchair users. They make a living with their hands and their creativity, and they continue to smile as they donate for flood relief. In the picture they hand over their products to Kerala’s minister Kadakampally Surendran.

We bow to you, Aji and Preetha. We are proud of you and thank you for the privilege of walking with you for a while in your journey.

A Palliative Care Professional’s Journey

“I searched for an answer to my mother’s suffering, but in none of the books I scoured did I find the term, ‘palliative care’. Just weeks later, I encountered those words for the first time, and I decided that this is the field I want to belong to.”

Pallium India’s Program Director, Smriti Rana, in her talk “The Power of Stories in Transforming Healthcare” at TEDx SJMC, described to an enthralled audience her journey as a palliative care professional. She spoke about how her mother taught her to listen to the sound of the trees moving in the wind, and went on to describe the power of listening in healing. She narrated the heart-wrenching experience of watching her mother’s difficult cancer journey, over twenty years ago, and how it brought her to palliative care. She shared her own observations as a palliative care professional in the subsequent years, seeing suffering, and understanding how, more than the physical pain, the psychological part of it sometimes tormented the patient.

Several pairs of eyes in the audience were moist, and the standing ovation at the end of the talk was so well deserved.

TEDxSJMC, organized at St Johns Medical College, Bengaluru on September 1, 2019, with the theme, “360 degrees”, was a well-coordinated event, with several eminent speakers sharing their life journey and the lessons they learnt.

Catching them young: CME on palliative care at KGMU, Lucknow.

Thanks to the initiative of Dr Anita Singh and the leadership of the Vice Chancellor Dr MLB Bhatt, King George’s Medical University (KGMU), Lucknow has initiated an active effort to enliven the palliative care services in the institution. Ms Shriya Singh and Dr. M. R. Rajagopal addressed a group of about 250 medical students, resident doctors and faculty members at a half-day event on 31 August 2019.

In the evening, pain physicians in the city got together to discuss ways of bringing in principles of palliative care into all medical practice. The director of Ram Manohar Lohia institute in Lucknow, Dr A K Tripathi and the head of Pain and Palliative Medicine at SGPGIMS Dr Anil Agarwal lead the discussions. We hope the media coverage will help to move things along.

Social Work Congress and Conference 2019

The 4th Kerala Social Work Congress and Social Work Conference was organized by Kerala Association of Professional Social Workers (KAPS) at Marian International Institute of Management, Kuttikkanam on 2019 August 27 and 28.

Almost a thousand social workers from different parts of Kerala, who are involved in various roles, attended the meeting. This was a great opportunity to meet new people, as well as to learn more about their area of work and to share experiences.

Babu Abraham and Aboobacker Sidheeque represented Pallium India at this gathering, and they got an opportunity to describe the vital role played by social workers in palliative care.

Providing palliative care in remote India

By Naomi Quinliven and Natalie Dragon, Australian Nursing and Midwifery Journal

With the support of NGO Australasian Palliative Link International (APLI) and the Indian NGO Pallium India, Mr Gaudoin visited the remote and hilly northeastern state of Mizoram in India.

Aizawl, a district in Mizoram State, with a population of just over one million, has the highest incidence of all cancers (270 per 100,000 people). Cancers of the stomach, oesophagus, hypopharynx, gallbladder, lung, and breast are common in the region.

Establishing new pain and palliative care centres has been a priority for the state, aiming to improve quality of life for patients.

Mr Gaudoin’s seven-day support visit encompassed education to medical and nursing schools and providing clinical supervision for practitioners in both the hospital and community settings.

Read more: Providing palliative care in remote India

Video of the Month: 

Please watch and share this video on palliative care

Hollywood Health and Society presents ‘Say No To Pain‘, an educational film meant to generate awareness about Palliative Care, and also give an insight on how pain should be viewed in its totality.

Patients suffering from terminal illnesses and life-limiting diseases, not only suffer physical pain. They suffer the anguish of emotional, social and spiritual pain as well. This film is an honest attempt to bring home that point, and to also guide people on how the concept of ‘total pain’ can be relieved through palliative care.

Click here to follow: Say No to Pain

Click here to watch the video: https://www.youtube.com/watch?v=lLGxtFbYTkE

 

Award for Pallium India


On Sunday, the 25th of August 2019, Pallium India received the “Vidyadhiraja Karunya Puraskaram” from Vidyadhiraja Vedanta Patana Kendram, Neyyattinkara.

Many of the authorities of the host organization reacted warmly to the suggestion from Pallium India for forming a citizen’s forum to promote palliative care in Neyyattinkara, which now has very poor access to palliative care.

The purse of  ₹25,000 that came with the award will be used for patient care activities. Thank you, everyone behind this award. We hope to work with you.

‘Pallium India taught me a lot’

Adhvaith Sundaramoorthy Balasubramanian from International school of Stuttgart, Germany, who was at Pallium India as an intern for two weeks, writes:

Palliative care was a very new concept for me. Some patients whom I got the opportunity to see were in advanced conditions whereas others were in a position to take care of themselves. Some of the diseases they had were hypoglycemia, dementia, delirium, constipation, stroke, hemiparesis, and paralysis. Pallium India taught me a lot that I didn’t know before.

My most memorable event from the two weeks was when, on my very first home care visit, I got two gifts from palliative care patients.

The first person gifted me a hand-knit bag that she had made before she became ill. When I entered her home I was greeted by her daughter and maid. They had a smile that lit my face but as we continued towards the room where the patient was, the smiles slowly turned into frowns. As the doctor was consulting with the patient I took some time to analyze the room. I noticed that there was a hand knit fly trap by the window. I started to converse with her about the knitted piece of art. She immediately asked her sister to bring other pieces that she had made to show me. The sister took out so many knit goods, from skirts to bags. Then the patient asked her sister to give me a small knit grocery bag.

The next patient who was an advocate and an author gave me a book he had written, called “The banana bunch and other stories”.

These two presents mean a lot to me.

‘A new normal’ in Kerala

Here is an important book to read: “Perspectives on a New Normal in Kerala”. Edited by Prof Babu Zachariah and Mr Arun Zachariah, this book is an important evaluation of the current status of Kerala, with a description of every movement that is likely to make a difference. At one look, it may appear to be all about Kerala; however it is worth noting that a lot of it could be applicable to every society that is changing, around the globe.

The book, published by Prabhat Book House, was released by Sri S. M. Vijayanand IAS, the universally respected and astute former Chief Secretary of Kerala. (We are proud that he is an advisor to Pallium India and a very active participant in helping us with strategy.) The event was attended by half the brain power in Trivandrum.

Pallium India had the privilege of writing a chapter on palliative care in the book, and also to receive a copy at the event, from Sri Vijayanand. Dr Geeta Gopal’s introduction to the book was a treat in itself. The various felicitatory talks were experiences for the soul.

Thank you, Mr Haneefa Rawther, General Manager of Prabhat Book House, for this gift to Kerala.

Pallium India organizes palliative care training in Kashmir

Dr Saima Furqan, Project Officer, Pallium India, writes:

With a little uncertainty and a lot of curiosity, Pallium India stepped into the paradise on earth – Kashmir – with the sole purpose of improving access to palliative care in the state.

Pallium India pledged to spread positivity and care to every nook & corner of the state that is reeling under protracted turmoil and suffering. Considering the rise in incidence of cancer cases, we knew that palliative care is the need of the hour but convincing the stakeholders, particularly the people in government, was not at all an easy task. However, contrary to our expectations, the Directorate of Health along with State Drug controller showed great optimism towards this noble cause.

Subsequently, Pallium India, in collaboration with Directorate of Health, Kashmir, conducted a sensitization program at Regional Institute of Health & Family welfare, Dhobiwan, Kashmir on 27th July 2019*.

The program was attended by medical superintendents, physicians and senior nurses from each district of Kashmir, as well as officials from Directorate of Health and Drug Controller’s office.

Dr. Kunzes Dolma, Director Health, Kashmir inaugurated the program and addressed the audience, highlighting the importance of palliative care services in order to ensure that people who suffer from life-limiting diseases are assured comfort within possibilities. She further added that at least one doctor from every district hospital should be trained in palliative care to begin with. She also expressed her desire that palliative care reaches every household, by training the care givers at home.

During her speech, Dr. Kunzes appreciated the attempt taken by Pallium India and suggested that more programs like these should be conducted in future not only for the medical fraternity but also for the community.

The program was aimed at sensitizing audience about the power of palliative care including need and medical use of opioids in treating life limiting diseases such as cancer, HIV/AIDS, CKD, respiratory disorders etc.

It was also aimed to perpetuate procurement of morphine in every district, for which Mr. Tariq Manzoor (Drug Control Officer) assured to provide list of identified pharmacies in every district by the State Drug Controller Office. He further suggested that as many as 100 doctors should be trained in the state for practicing palliative care.

Pallium India is excited with these developments and will be working closely with Department of Health to ensure hassle free access to availability of trained doctors, nurses and pain relief medications in the state.

* The training took place before the abrogation of Article 370 in Jammu & Kashmir on Aug 5, 2019

Chatham House Meeting – a possible game changer for the future

Pallium India had the opportunity to be part of a very important discussion, organised by the British Government in collaboration with the World Health Organization, at the Chatham House, London. The eventual outcomes, one would hope, would be as historic as the setting of the meeting.

Please read Ms Katherine Pettus’ blog on it, in Global Palliative Care Forum: Universal Health Coverage: palliative care’s brass ring

The purpose of the meeting was to go into the global access to palliative care abyss and to seek solutions.

A rich discussion from some of the keenest minds in the healthcare and palliative care fields led to several suggestions for improving access to palliative care.

How would you grapple with the fact that all that is mentioned as part of Universal Health Coverage would still fail to apply to the huge percentage of human population that has no access to healthcare at all?

And how would you ever overcome the therapeutic obstinacy of a growing percentage of doctors who believe that they have a duty to prolong life at all costs, even if that only adds to suffering, by prolonging the dying process at a time when existence itself is intolerably and brutally painful?

We shall have to wait a little, not only for an official report on the Chatham House meeting to emerge; but even more importantly, for some of the action steps that are likely to follow this meeting.

Image courtesy: https://www.chathamhouse.org/

By your side (Arike) – a unique palliative care service

An initiative of the palliative care team at Ernakulam (Kerala) is filling a gap in care. A paid service at no-profit-no-loss basis provides palliative care nurses for day care in the patient’s home. In addition to providing expert nursing service, this also enables a family member to be free to work during the day.

Read the news in The Hindu: Home palliative day care service launched


Donate to Pallium India

The money you give will pay for essential free medicines for the poor, for their travel to the clinic or for schooling of their children, or other forms of care.

Please give whatever you can. No amount is too small.

To donate, please visit:

http://palliumindia.org/donate/ (India)

http://palliumindiausa.org/ (USA)

Write to us: info@palliumindia.org

Call us: +91-9746745497 (India) / +1-718-273-8597 (USA)

All donations to Pallium India are tax deductible.

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Find out more about our courses at: http://palliumindia.org/courses/

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image06Palliative Care Information Centre

Contact Pallium India’s Information Centre (9 am to 5 p.m., except on Sundays and National holidays) for information related to palliative care and about establishments where such facilities are available in India.

Telephone: +91-9746745497
or E-mail: info@palliumindia.org
Address: Pallium India Trust, VP 80/13, Golden Hills, Venkode P.O., Vattappara, Thiruvananthapuram 695028

For more details, please visit: http://palliumindia.org/info-centre/

PARTING SHOT

It is the people, the people, the people!

Anne Wallace and Ian Wallace who visited us from New Zealand and gave us many gifts including Pallium India’s Healing Garden, shared with us this beautiful piece of wisdom of the Maoris.

“Nurture the seed and it will blossom;

Even though it is small it is a treasure.

Those who lead give sight to those who follow;

Those who follow give life to those who lead.

What is the most important thing in the world?

It is the people, the people, the people!”

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