Care Beyond Cure
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! July 2019 !
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July 1, 2019
WHO INCLUDES CHRONIC PAIN IN NEW ICD-11
“She eats like a pig and grins away happily, watching a comedy show on
television; but the moment someone points out the heaps of washing to be done,
she starts complaining of pain!”
Are words like these familiar to you? Do you know somebody who seems to
live a near-normal life, but is always complaining of pain, and irritating
everyone around them? Somebody who is short-tempered and picks up a quarrel
People with cancer pain get some sympathy. People with long-term pain
(chronic pain) are shunned.
But their suffering is real, and often, horrendous, because it is for a
life time. The source of the pain may not be very clear; it could be from the
low back or it could be generally from muscles and joints but over time, the
inexorable pain becomes all-consuming. Moreover, since the pain cannot be seen
on an X-ray or an MRI, it could be ignored or even laughed at. “It’s all in
your head” or “Just stop thinking about it” are common insensitive reactions to
On 25th May, 2019, thanks to the advocacy by a task force of the
International Association for Study of Pain (IASP)
, chaired by Prof Rolf-Detlef Treede and co-chaired by Winfried Rief, the
World Health Organization has approved the new version of International
Classification of Diseases (ICD-11) [https://icd.who.int/en/] , which includes
chronic pain for the first time.
What does it matter?
Well, it does matter because now chronic pain is more likely to be
recognised as a health issue and to get attention in research and medical
WHO AND EU REINFORCE COOPERATION FOR UNIVERSAL HEALTH COVERAGE
Thank you, Ms Katherine Pettus of IAHPC [https://hospicecare.com/home/] , for
informing us of the partnership entered upon between the European Commission
(EC) and the World Health Organization (WHO) to upscale Universal Health
Coverage in 66 different countries. India is one among the 66 countries.
Read the press releases from EU and WHO:
EU and World Health Organisation team up to boost access to health
services in developing countries
WHO and EU reinforce cooperation for Universal Health Coverage
The EU pursues a rights-based approach to health, by supporting
countries to design policies that maximised health benefits through the
equitable treatment of all citizens, and it will be optimal if those of you who
advocate in the countries where the partnership is being implemented, could
ensure that palliative care is include in the deliberations.
More about the partnership and countries here:
THREE YOUNG, BRAVE FIGHTERS DESERVE SUPPORT
Here is an appeal on behalf of three teenagers who know what suffering is.
These three girls have seen how people dear to them went through agonies with
major health issues, how their families were destroyed financially. Their
experience with disease and suffering made them determined to become doctors.
But the entrance examinations for medical admission make no allowance
for attitude, commitment or passion. Only facts and figures count. In today’s
rat race, they do not stand a chance unless they go through coaching classes
which are expensive by our standards.
The requirement for the year for the three would be ₹3.2 LAKHS
(APPROXIMATELY $ 4600) (₹75,000+₹75,000+ ₹1.7 lakhs, the difference due to the
location of the courses).
Would three people come forward, to sponsor one girl each?
If not, can you support with donating part of the fees? To donate,
please visit: https://palliumindia.org/donate/
[https://palliumindia.org/donate/] (India) or http://palliumindiausa.org/
Please write to us, we shall give you the girls’s stories:
AAROHAN: EMPOWERING PALLIATIVE CARE BENEFICIARIES TO BE ADVOCATES
“Thank you Pallium. Its unbelievable how we establish connect with like-minded
people” – Ms Seema Bali
“Thanks for making me part of this empowering project. After attending
yesterdays session, I am more convinced that together we can achieve”- Dr.
These are some of the reactions from the participants of our new online
training program on palliative care advocacy meant for direct beneficiaries-
survivors and family members.
We must confess that we are a bit excited about this program. Its
potential, we truly feel, is enormous. These are voices never heard in the
ordinary course of events. The impact of their empowerment could be tremendous.
We started the programme on 22 June 2019, with 18 participants. Many
more wanted to join; but we had to limit the number of participants so as to
Thank you, Worldwide Hospice and Palliative Care Alliance
[https://www.thewhpca.org/] (WHPCA), ECHO International [https://echo.unm.edu/]
and ECHO India [https://www.echoindia.in/] for supporting us to conduct this
MANJUTHULLI – AN EXHIBITION AND SALE TO HELP PALLIUM INDIA’S PATIENTS
A group of volunteers, including palliative care activists and artists, is
organizing an exhibition and sale of paintings and craft products. This 3-day
event, _Manjuthulli_, will take place from July 4, 2019 to July 6, 2016 at
Museum Auditorium, Trivandrum. The program will be inaugurated by Cartoonist
Shri P. V. Krishnan at 10 a.m. on 4th July.
Part of the funds raised from this program will be used to support
Pallium India’s patient care activities
We request your presence and support for this event. Your contributions
will go a long way in improving the life of people with chronic and
DATES: July 4 to July 6, 2019
VENUE: Museum Auditorium, Trivandrum
INAUGURATION: 10 a.m., 4th July, 2019
CONTACT: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx] /
(0)9746745502, (0) 9496284894
Read what The Hindu Metro Plus writes about Manjuthulli: ART TO HEAL
_If you are unable to attend the event but wish to support us, please
Donate [http://palliumindia.org/donate] ._
GILLY BURN’S ETHICAL SERENDIPITY PALLIATIVE CARE STUDY / TEACHING TOUR
Gilly Burn, Founder Director, Cancer Relief India, and a dear friend of
palliative care in India, is organizing a study/teaching tour beginning in
February 2020. The tour is planned to follow on from the IAPCON2020, Guwahati
The SERENDIPITY PALLIATIVE CARE STUDY TOUR
enables you to make a difference by giving your time and expertise to teaching
palliative care as well as being inspired to share and implement what you learn
in your workplace.
The tour begins on 17th February and ends on 3rd March.
_ Click here to read the complete tour itinerary
WORLD HOSPICE AND PALLIATIVE CARE DAY 2019
This year’s World Hospice and Palliative Care Day is on October 12,
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.
This year’s WHPCD 2019 comes on the heels of the UN High Level Meeting
on Universal Health Coverage (UHC) on 23 September. Therefore, a key action for
the campaign will be to call on governments to listen to people who need or
access palliative care and support the inclusion of the essential package of
palliative care in all national Universal Health Coverage (UHC) schemes.
To know more about World Palliative Care Day, please visit:
AGONY IN INDIA [HTTPS://WWW.BBC.CO.UK/PROGRAMMES/W3CSWGKF]
A chronic lack of opioid drugs leaves millions of people throughout the
developing world to live and die in unrelenting, excruciating pain. It is a
particularly bitter irony in India, which historically had the world’s biggest
legal opium poppy industry. The Lancet journal has dubbed the lack of access
even to cheap pain killers such as morphine a “medical, public health, and
Where will the drugs come from? Megan O’Brien of the American Cancer
Society explains a cheap solution they are advocating in Sub-Saharan Africa.
Kunal Saxena, managing director of pharma company Rusan, tells of his hopes for
the privatisation and expansion of India’s opium business. And Justin Rowlatt
reports from Kerala.
(Picture: Benedict Alexander, a patient at the Pallium India clinic,
with his wife Bindu; Credit: BBC)
LISTEN TO THE PODCAST NOW: https://www.bbc.co.uk/programmes/w3cswgkf
ABSTRACTS ARE INVITED FOR IAPCON 2020, GUWAHATI
27th International Conference on Palliative Care
[http://iapcon2020.com/index.html] (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. For guidelines, please visit:
For more information, please visit the conference website:
ADDRESSING PALLIATIVE CARE NEEDS DURING EMERGENCIES
Following the worst flood in a century that ravaged Kerala in August
2018, killing 500 people and displacing more than a million, two thoughts
remain paramount. One was the intensity of suffering. The other, intense pride
on how the common man reacted, tens of thousands working shoulder to shoulder
with the government machinery, fire forces and armed forces. The people of
Kerala demonstrated true heroism.
Looking back, for us in palliative care, the predominant thought was
the magnitude of suffering of those with palliative care needs. When people
were evacuated, many lost medicines and physical aids which were essential for
their very existence. For the differently-abled, including the elderly, rescue
was often delayed and even after rescue, their suffering was intense. Let us
certainly hope that a disaster of that magnitude does not happen again.
However, even if humanitarian crises of smaller magnitude happen, the
palliative care network has to be ready. People with palliative care needs do
require special services.
Pallium India and Indian Association of Palliative Care (Kerala) joined
hands with Kerala State Disaster Management Authority (KSDMA) to conduct a
one-day consultation on “Addressing the needs of the Elderly and People under
Palliative Care in Disaster Related Emergencies,” involving as many palliative
care organizations and NGOs that work in the field of elderly care in Kerala as
possible. The expected participation was 50; but 85 people registered.
We now are ready to create an action plan and to conduct training
programs. Even in small towns or villages, a major road traffic accident or a
similar calamity would find us better prepared, we hope. We thank Mr Sekhar
Kuriakose and team at KSDMA for allowing us to work with them.
RISING ALCOHOL CONSUMPTION THREATENS HEALTH IN INDIA AND GLOBALLY
A press release from the Healthy India Alliance (HIA)
calls for multi-sectoral action for the increasing alcohol consumption in
India. The growth in per capita consumption is a global phenomenon, but the
increase in India is way out of proportion to the rest of the world.
Understandably, the negative impact is much more in low and low-middle income
countries than in the Global North.
HIA (of which Pallium India is a member) calls for the following
* Comprehensive ban on all forms of alcohol advertising, promotion and
sponsorship, including surrogate advertising of non-alcoholic products and
online promotions, particularly on social media and depiction in movies and
online streaming content;
* A uniform minimum legal drinking age (25 years) to check drinking
among adolescents and young adults, with a robust strategy to check age at
Points of Sale;
* Appropriate taxation across all forms of alcohol;
* Stringent enforcement of drink driving laws and regulations;
* Denormalisation of alcohol use as a social practice, through
comprehensive and audience-specific health promotion campaigns
_Press Release: Healthy India Alliance calls for urgent multi-sectoral
alcohol policy action in India_
_Global alcohol exposure between 1990 and 2017 and forecasts until
2030: a modelling study_
MANUAL FOR GLOBAL PALLIATIVE CARE MONITORING:
How does one measure access to palliative care? The one oft-quoted index,
morphine (or equivalent) consumption, is grossly inadequate.
Natalia Arias on behalf of “ATLANTES Research Program: Human Dignity,
Advanced Illness and Palliative Care” informs us of the new Brief Manual of
Health Indicators for the Monitoring of Global Palliative Care
Indeed, no such manual of indicators can be perfect. For example, you
can check whether the country has a palliative care policy. It would not be
easy to find out the level of implementation. One can be glad that a budget
allocation has been made, but what if most of the available resources are
wasted because of poor accountability or because of poor knowledge or skill
However, this is indeed a giant step forward in measuring access to
palliative care. Thank you, all at ATLANTES.
HOW DO INDIAN AMERICANS DIE
See the excellent article by Viji Sundaram in India-West: _As Death
Approaches, Older Indian Americans Unprepared for the End_
In India, we have a paradoxical situation wherein the poor die better;
in their homes most of the time, surrounded by family, with a few drops of
water when the throat is parched, and a loving hand to hold. The rich, on the
other hand, suffer alone, imprisoned in intensive care units, a painful tube in
every orifice, arms and legs bound.
In the USA, such intensive suffering is almost certain unless one has
prepared an advanced directive. A legal document has to be prepared beforehand
if one is not to be on ‘full-code’ – that is, if someone is not to jump on
their chest and squeeze it some hundred times a minute, as hard as they can,
often till ribs crack. And then, following the resuscitation, the elderly
person dying a natural death finds himself half-dead, hooked to a machine.
Again, alone, in agonising suffering.
What a paradox that you have to write a legally binding document and
have it witnessed, if you are to protect yourself against an irrational medical
When will the modern, brave new world of health care recognise that
death is the inevitable consequence of life, and realise that the most
important thing for that person could be medicines for physical comfort, yes,
but also a loving hand to hold?
Thank you, Ms Viji Sundaram, for this eye-opener for many.
VIDEO OF THE MONTH:
Watch the video here: https://youtu.be/SkXlJ9EXZVo
ONLINE FOUNDATION COURSE IN PALLIATIVE MEDICINE (FOR DOCTORS)
The Objective of the ONLINE FOUNDATION COURSE IN PALLIATIVE MEDICINE is
to train healthcare professionals in pain management and palliative care.
_TO ENSURE ADEQUATE INTERACTION DURING SESSIONS, WE WILL HAVE TO LIMIT
THE NUMBER OF PARTICIPANTS AT EACH COURSE ON A FIRST-COME, FIRST-SERVED BASIS.
SO REGISTER QUICKLY!_
M.B.B.S or B.D.S with permanent registration with medical council.
CLASSES SCHEDULED: 18 Sessions
START DATE: 04 July 2019
END DATE: 31 Oct 2019
DAY OF THE WEEK: Thursdays
CLASS TIMING: 3:00 PM – 4:30 PM
HOW TO APPLY
DOWNLOAD THE APPLICATION FORM
, fill it up and send it to tipsecho@xxxxxxxxxxxxxxxx
Contact us at +91-6282902450 or tipsecho@xxxxxxxxxxxxxxxx
CLICK HERE FOR MORE INFORMATION
PALLIATIVE CARE ALWAYS COURSE
“Palliative Care Always: India” is a case-based online course free of cost,
focusing on palliative care in India, organised by Stanford University.
This course is ideal for healthcare providers and volunteers working in
healthcare, and patients and families living with terminal illnesses. No prior
experience with palliative medicine is necessary.
ENROLLMENT CLOSES SEPTEMBER 1ST, 2019.
END DATE OF THE COURSE: OCTOBER 14TH 2019
Please see the brochure.
For more information, visit:
CONGRATULATIONS DR. LEGHA – IACA LIFETIME ACHIEVEMENT AWARD RECIPIENT
Sewa Legha is this year’s recipient of the IACA Lifetime Achievement Award in
Dr Legha served as an Attending Oncologist in the Medical Oncology
department of M D Anderson Cancer Centre for 20 years. He was the lead
investigator in several phase-1 and phase-2 studies with new Anticancer drugs
such as Paclitaxel and Nab-Paclitaxel and also led in the development of new
treatments for Advanced Breast Cancer and Melanoma. He is the founder of the
Indo-American Cancer Association (IACA) which brings together Oncologists of
Indian Origin at the annual ASCO meetings and provides an opportunity for
Traveling Fellowships to the oncologists practicing in India. During the past
15 years, over 125 cancer specialists from India have benefited from this
ongoing program which is largely supported by the contributions of the US-based
Congratulations, Dr Legha and thank you for everything you have done
for cancer care and palliative care in India.
COMPASSIONATE COMMUNITY FOR CARE – CAMPAIGN
Please join us in making this world a better place!
Pallium India invites communities – RESIDENTS’ ASSOCIATIONS, WELFARE
GROUPS, PENSIONERS’ ASSOCIATIONS, SENIOR CITIZENS’ CLUBS, YOUTH CLUBS ETC. to
join us in our
“CAMPAIGN ON COMPASSIONATE COMMUNITIES FOR CARE”
– To foster a future generation that is socially responsible and
sensitive to the needs of the destitute and the weak
– To create community awareness regarding palliative care and to mobilize
– To ensure continuum of support to the victims of needless and severe health
– To create a network and generate a platform for people to come together and
work towards this cause
– and more…
Babu Abraham, Manager – Advocacy: +91-9746745502 / babu@xxxxxxxxxxxxxxxx
DONATE TO PALLIUM INDIA [HTTP://PALLIUMINDIA.ORG/DONATE]
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://palliumindiausa.org/ [http://palliumindiausa.org/] (USA)
Write to us: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx]
Call us: +91-9746745497 (INDIA) / +1-718-273-8597 (USA)
_ All donations to Pallium India are tax deductible._
UPCOMING EVENTS [HTTP://PALLIUMINDIA.ORG/COURSES/]
* JUL 4, 5, 6, 2019: “ Manjuthulli
” – an exhibition and sale to help Pallium India’s patients. Venue: Museum
Auditorium, TRIVANDRUM. Contact: Lalitha S: 9496284894, Babu Abraham:
* JUL 4, 2019: Online Foundation Course in Palliative Medicine
(for doctors). Register:
Contact +91-6282902450 or tipsecho@xxxxxxxxxxxxxxxx
* JUL 26-28, 2019: Volunteer Training Program in Trivandrum. Contact:
education@xxxxxxxxxxxxxxxx [mailto:education@xxxxxxxxxxxxxxxx] / 8589998760.
* AUG 7, 2019: Foundation course in Palliative Medicine for Doctors, in
Trivandrum, 10 days. Register: https://palliumindia.org/courses/foundation/
[https://palliumindia.org/courses/foundation/] Contact: +91-8589998760 /
* SEP 2, 2019: Certificate Course in Pain and Palliative Medicine (for
doctors) and Certificate Course in Palliative Nursing (for nurses) CCPPM:
Contact: +91 8589998760 / education@xxxxxxxxxxxxxxxx
Have Queries? Write to: info@xxxxxxxxxxxxxxxx
Find out more about our courses at: HTTP://PALLIUMINDIA.ORG/COURSES/
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We regularly post articles related to palliative care from around the
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We’re also on Twitter: @palliumindia [https://twitter.com/palliumindia]
PALLIATIVE CARE INFORMATION CENTRE [HTTP://PALLIUMINDIA.ORG/INFO-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.
or E-mail: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx]
Address: Pallium India Trust, VP 80/13, Golden Hills, Venkode P.O., Vattappara,
For more details, please visit: http://palliumindia.org/info-centre/
RITU BHALLA’S OPENING ADDRESS AND WHAT IT MEANS TO US ALL:
Cancer leaders from 10 South-East Asian nations got together at Delhi on the
25th and 26th of June 2019. The opening address was not given by a minister.
Nor by the WHO Regional Director for South East Asia, Ms Poonam Khetrapal
Ms Ritu Bhalla gave the opening address. And held everyone spell-bound.
WHO IS RITU BHALLA?
Ritu is a cancer survivor and leader of KidsCan Konnect (KCK), a
teenage and young adult survivors group of CanKids…KidsCan
Ritu got cancer twice. The first at the age of 4 and the second when
she was 11.
Her talk included the following questions:
* Why was it that it took my doctors 8 months to diagnose my second
* Why did my friend Vikas have to go to 22 hospitals before he could
get a diagnosis?
* Why did a friend of mine have to undergo a bone marrow puncture with
no measures to reduce the pain? (For those who do not know it, a bone marrow
puncture involves a large needle pushed through a bone – right into it, a very
very painful procedure).
* Why did my friend Neetu with chronic myeloid leukemia have to die in
pain, with no access to the right pain-relieving medicines?
Most of the suffering that Ritu talked about was avoidable. It was not
a question of cost. Relief could have been given at low cost.
“I can help. Please permit me to help you”, Ritu pleaded, raising a
voice that could come from a million people getting cancer in India every year.
The Astana declaration of 2018
[https://palliumindia.org/2018/11/astana-declaration/] asked member countries
to include communities in designing and controlling health systems. Will we
listen and respond to Ritu’s plea?
Congratulations WHO SEARO [http://www.searo.who.int/en/] for making
Ritu’s voice heard. And congratulations, Poonam Bagai and CanKids…KidsCan (a
National Society for Change for Childhood Cancer in India) for empowering
survivors to grow to their potential.