Care Beyond Cure
CHILDREN’S BIRTHDAY PARTY AT TRIVANDRUM
Smriti Rana, Program Director for Pallium India’s Children’s Palliative
Care Project, writes:_
On September 22 2015, we hosted our first ever Children’s Palliative
Care birthday party at the Thapovan Heritage Home, Kovalam. From here on, we
will host 4 such parties a year and celebrate the lives of our youngest,
bravest patients and their extraordinary families. Each child and sibling was
given a present after we asked them and their parents what they would like,
instead of us choosing what we thought appropriate.
This would not have been possible without the generous contributions
made by 13 very special people, some of whom insisted on giving double the ask.
Thank you for sending across resources, making party decor for us from scratch,
sending things you thought we might need from other countries and carrying
things from one city to another for us. There are no words that can ever
adequately convey the depth of our gratitude.
I want to tell you something else here: the owner of the resort joined
us halfway through, made a further contribution of his own and then presented
us with an additional envelope. This envelope contained donations collected by
the service staff there as a gesture of solidarity and support for our
And then… When the time came to settle the bill with them, we were told
there was none. This was after the resort fed 65 people some great food, gave
us the whole place to use, spared every staff member for anything we might have
needed, gave us a room for some of the sicker children to rest…and did all of
this with big smiles and enthusiasm.
Oh wait. Before you think that was it, it turns out that it might very
well be the last season for this beautiful resort because their land is being
acquired to make room for the proposed port in the area. At a time when most
people would be worried for their jobs and future, these people chose to share
what they had with us and told us that this was probably the best farewell
event for them as well.
I hope that restores some of your faith in humanity because it
certainly overwhelmed us all, brought us to tears and cracked our hearts
further wide open. Send your love and good wishes to these beautiful people at
Thapovan. They only deserve good things to happen for them.
The funds that have exceeded the budget have been placed in a reserve
fund for our children, as specifically requested by all our contributors.
Click here to see some of the highlights from The Best Day Ever.
TO OUR DONORS, OUR WELL-WISHERS, SUPPORTERS, VOLUNTEERS AND FRIENDS, FROM ALL
OF US AT PALLIUM INDIA – ALL OUR LOVE AND INFINITE GRATITUDE.
LOT OF AIRTIME FOR CONTROLLED MEDICINES AT THE HUMAN RIGHTS COUNCIL
Ms Katherine Pettus writes to say that Mr Diederik Lohman of Human
Rights Watch did the palliative care community proud on 28 September 2015 at
the Human Rights Council on a panel organised by the Global Commission on Drug
Policy to release their new report, which will be online soon.
The panel was sponsored by Senegal, Switzerland, and Uruguay, and
chaired by Mme. Ruth Dreifuss. The topic of access to controlled medicines has
had a lot of airtime this past week, also at the CND, where WHO participated in
a side event organised by Norway and Australia, in the meeting room of CND
itself, just before the session.
Ms Pettus adds, “I literally cannot count how many member states at
both CND and the HRC have now said that improving access to controlled
medicines is a human rights priority and must be addressed at UNGASS2016.
Cheers to all of you for your advocacy work, and congratulations to
Diederik for his very moving presentation yesterday, which brought the voices
of patients and families to the Human Rights Council.”
WE JOIN KATHERINE, DEAR DIEDERIK, TO CONGRATULATE YOU AND TO THANK YOU.
INNOVATION IN PALLIATIVE CARE AWARD FOR PROJECT HAMRAHI
Dr Odette Spruyt, Founder of Australasian Palliative Link International
[http://apli.net.au/] (APLI) and a dear friend of Pallium India, received the
award for Innovation in Palliative Care at the Palliative Care Australia awards
on September 3, 2015 for APLI’s Hamrahi program.
Project Hamrahi [http://palliumindia.org/programs/hamrahi/] , a
collaboration between APLI and Pallium India, is a program in which a
doctor-nurse team from Australia / New Zealand builds a long-term relationship
with one palliative care centre in India that Pallium India has catalysed or
works with. The academic and cultural exchange has been of tremendous impact in
several sites. Congratulations and thank you Odette.
WE NEED YOUR HELP [HTTP://PALLIUMINDIA.ORG/2015/09/WE-NEED-YOUR-HELP/]
With rising costs, our Trivandrum Institute of Palliative Sciences is
struggling to make ends meet.
We have an educational support program for the children of our
patients. These children have been forced to drop out of school when disease
ravaged the family. We provide financial support to complete their education,
till they qualify from a course that helps them earn for their family.
For this year, we need ₹ 15 LAKHS (US$ 22,800). For example, right now,
we have two girls who need to start on their nursing education, next week, and
we need your help.
WHATEVER YOU CAN GIVE, HOWEVER SMALL, WILL MAKE A DIFFERENCE.
Those who are willing, please contribute
* _FOR TRANSFER FROM WITHIN INDIA_:
State Bank of India
Branch: Pattom, Trivandrum
Beneficiary: M/s Pallium India Trust
Account No: 30086491915
IFS Code: SBIN0003355
MICR No: 695002007
* _FOR TRANSFER FROM ABROAD_:
Branch: Vazhuthacaud, Trivandrum
Beneficiary: M/s Pallium India Trust
Account No: 003700900000036
IFS Code: DLXB0000037
SWIFT Code: DLXBINBBXXX
* Please send cheques and drafts to: Pallium India
Address: Arumana Hospital, Airport Road, Subash Nagar, Vallakadavu P.O.
Thiruvananthapuram – 695 008, Kerala, India.
For more information, please write to us: info@xxxxxxxxxxxxxxxx
YES, IT IS YOUR RIGHT; AND MINE.
If you or a loved one, some day, happen to have a health problem
resulting in severe pain – whether it be for a day or for a lifetime – you have
a right to demand pain relief. IT IS A HUMAN RIGHT. Several documents have, in
the past, laid emphasis on it. (Cape Town Declaration (2002) [i], the European
Committee of Ministers (2003) [ii] , the International Working Group (European
School of Oncology)(2004) [iii] and the Korea Declaration (2005) [iv].)
While this right is accepted in the case of adults, it is oft forgotten
in the case of children. International Children’s Palliative Care Network
(ICPCN) informs us of a recent declaration by the Special Rapporteur
on the right to health emphasizing the child’s right to palliative care.
With the palliative care day coming on, its theme being Hidden Lives,
, the hidden suffering of children should be on our collective conscience.
Thank you, Joan Marston, and thank you, ICPCN, for reminding us all of this.
_[i] Sebuyira LM, Mwangi-Powell F, Perira J and Spence C. The Cape Town
Palliative Care Declaration : Home-Grown Solutions for Sub- Saharan Africa. J
Pall Med (2003) 6; 3: 341-343._
_ [ii] Council of Europe Recommendation 24 of 2003. Adopted by the European
Committee of Ministers on November 12 2003._
_ [iii] Ahmedzai SH et al A new international framework for palliative care.
European J of Cancer 40 (2004) 2192-2200._
_ [iv] The Korea Declaration. Report of the Second Global Summit of National
Hospice and Palliative Care Associations, Seoul, March 2005. Available at
www.hpc-associations.net [http://www.hpc-associations.net/] ._
SCHOLARSHIPS AVAILABLE FOR SIX WEEKS CERTIFICATION COURSES
The Indo American Cancer Association and John and Editha Kapoor
Charitable Foundation, in association with Trivandrum Institute of Palliative
Sciences, are offering scholarships to practising doctors and nurses, who are
interested in learning fundamentals of Palliative Care.
The scholarships are offered to 12 most deserving candidates every
year, for the following courses:
* 6 weeks Certiﬁcate Course in Palliative Medicine
* 6 weeks Certiﬁcate Course in Palliative Nursing
The details of the training centres where these courses are offered are
given below. Please contact the respective training-in-charge for application
* Trivandrum Institute of Palliative Sciences, TRIVANDRUM
Dr. Sreedevi Warrier: drsreedevi@xxxxxxxxxxxxxxxx
* MNJ IO and Regional Cancer Centre, HYDERABAD
Dr Gayatri Palat; Ms Vineela: mnj.palliative@xxxxxxxxx
* Bhagwan Mahaveer Cancer Hospital and Research Centre, JAIPUR
Dr Anjum Joad; Dr Shikha Jain: palliumjaipur@xxxxxxxxx
* The Gujarat Cancer & Research Institute, AHMEDABAD
Dr Geeta Joshi: palliumindia.gcri@xxxxxxxxx
* Tata Memorial Centre, MUMBAI
Dr Mary Ann Muckaden: muckadenma@xxxxxxxxxx [mailto:muckadenma@xxxxxxxxxx]
* SGCCRI, KOLKATA
Dr Rakesh Roy: Rex4you@xxxxxxxxx [mailto:Rex4you@xxxxxxxxx]
Click here for Guide and Practical Tips for Centres & Coordinators
UPCOMING COURSES [HTTP://PALLIUMINDIA.ORG/COURSES]
TIPS, TRIVANDRUM, KERALA
* SIX WEEK CERTIFICATE COURSE IN PAIN AND PALLIATIVE MEDICINE (CCPPM)
[http://palliumindia.org/courses/ccppm/] – 2 NOV 2015, 7 MAR 2016, 2 MAY 2016
* SIX WEEK CERTIFICATE COURSE IN PALLIATIVE NURSING (CCPN)
[HTTP://PALLIUMINDIA.ORG/COURSES/CCPN] – 2 NOV 2015, 7 MAR 2016, 2 MAY 2016.
* 10-DAY FOUNDATION COURSE IN PALLIATIVE MEDICINE
[http://palliumindia.org/courses/foundation/] – 2 NOV 2015, 7 MAR 2016, 2 MAY
* 2-DAY VOLUNTEERS TRAINING PROGRAM is conducted every month at
Trivandrum Institute of Palliative Sciences, Arumana Hospital, Trivandrum.
Anyone interested in learning about palliative care can attend.
* Contact: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx] , +91
GCRI, AHMEDABAD, GUJARAT
* SIX WEEKS CERTIFICATE COURSE IN PAIN AND PALLIATIVE MEDICINE (CCPPM)
[HTTP://PALLIUMINDIA.ORG/COURSES/GCRI-CCPPM] – 1 MARCH 2016
* SIX WEEKS CERTIFICATE COURSE IN PALLIATIVE NURSING (CCPN)
[HTTP://PALLIUMINDIA.ORG/COURSES/GCRI-CCPN] – 1 MARCH 2016
* Contact: palliumindia.gcri@xxxxxxxxx
MNJIO & RCC, HYDERABAD, TELENGANA
* ONE MONTH CERTIFICATE COURSE IN PAIN AND PALLIATIVE MEDICINE (CCPPM)
[http://palliumindia.org/courses/hyd_ccppm/] FOR DOCTORS, NURSES, SOCIAL
WORKERS AND VOLUNTEERS
* Contact: mnj.palliative@xxxxxxxxx [mailto:mnj.palliative@xxxxxxxxx] ,
+91 91772 38901
BMCHRC, JAIPUR, RAJASTHAN
* 6 WEEKS’ CERTIFICATE COURSE IN PAIN AND PALLIATIVE CARE FOR DOCTORS
AND NURSES [HTTP://PALLIUMINDIA.ORG/COURSES/JAIPUR_CCPPM/]
* Contact: Dr Anjum Khan Joad. palliumjaipur@xxxxxxxxx
For more details on the courses we offer, please visit:
IAHPC TRAVELING SCHOLARSHIP OR FELLOWSHIP
As part of Members’ Recognition Month, International Association for
Hospice and Palliative Care [http://hospicecare.com/home/] (IAHPC) will be
giving a prize in two categories: Recognizing Loyalty (open to current IAHPC
members who have kept their membership active for at least two consecutive
years by October 31, 2015) and Increasing Membership (open to current IAHPC
members who bring the highest number of new or renewed members until October
The prize will be an IAHPC Traveling Scholarship or Traveling
Fellowship of $2,000.
For details, please visit: IAHPC Announcements Page
SVYM BESTOWED WITH THE BEST NGO IN INDIA AWARD 2015
We are very happy to announce that Swami Vivekananda Youth Movement
(SVYM) [http://www.svym.org/] has been bestowed the NGO award 2015
[http://www.svym.org/svym-bestowed-best-ngo-indian-award] , organized by ‘The
Resource Alliance’, New Delhi.
SVYM is a development organization engaged in building a new civil
society in India through its grassroots to policy-level action in Health,
Education and Community Development sectors.
SVYM has always been supportive of palliative care and has been a
partner in our efforts to create the National Program in Palliative Care as
well as in Amendment of the NDPS Act of India. Congratulations, SVYM!
SEEKING EXPERIENCED INTERNATIONAL PHYSICIANS
Pallium India seeks clinically experienced international physicians who
are able to practice and teach in a variety of settings, include home visits,
outpatient visits, and the inpatient unit. They must be adaptable to new
environments and be able to commit to over 3 months. Pallium India will provide
translators as most patients will prefer to speak Malayalam. Teaching will be
done in English.
If you are interested, please write to us: info@xxxxxxxxxxxxxxxx
DONATE TOYS FOR CHILDREN! [HTTP://PALLIUMINDIA.ORG/DONATE]
We are happily accepting toy donations for our weekly children’s
palliative care clinic. Certain specifications need to be considered before
sending the toys across, due to the nature of the children’s illnesses.
Kindly avoid toys with small breakable parts, anything with batteries,
toys with sharp edges, regular sized Lego pieces, jigsaw puzzles with small
pieces, games involving liquids (like the ones that shoot rings onto sticks at
the press of a button), stuffed toys that have fine hair and fluff, etc.
If you are interested in sending something across, do call us
(+91-9746745497) or write to us:info@xxxxxxxxxxxxxxxx. Thank you very much!
PALLIATIVE CARE INFORMATION CENTRE [HTTP://PALLIUMINDIA.ORG/INFO-CENTRE]
Contact Pallium India’s Information Centre (9 am to 12 noon) for
information related to palliative care and about establishments where such
facilities are available in India. Telephone: +91-9746745497 or E-mail:
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
SAHAYATRA MALAYALAM NEWSLETTER [HTTP://PALLIUMINDIA.ORG/SAHAYATRA/]
SAHAYATRA, Pallium India’s Malayalam print magazine, is meant for
anyone interested in palliative care – patients and families, palliative care
professionals, volunteers and well-wishers.
Click here to read the latest issue: http://palliumindia.org/sahayatra/
To subscribe to SAHAYATRA, please send your complete postal address to
NARRATIVES ON PAIN AND RELIEF: GIVING VOICE TO THE VOICELESS
In another step forward, the Journal of Pain and Palliative Care
Pharmacotherapy now has a page on the website
[http://explore.tandfonline.com/page/med/ippc-pain-narratives] where all the
narratives published so far can be accessed.
If you are in any way connected with palliative care, you must be
having a story in you, that touched your heart. Do please put it in writing and
send it to us: info@xxxxxxxxxxxxxxxx [mailto:info@xxxxxxxxxxxxxxxx] . You get
an indexed publication to your credit. And also the satisfaction of having
helped the cause. _ Read more here.
Here are some of the narratives that have been published:
* Through the Eyes of Child
[http://www.tandfonline.com/doi/full/10.3109/15360288.2013.782938] : Mary
Macey’s reflection on her childhood and adolescence, after losing her mother
and how palliative care brought her experience into focus.
* When Two Worlds Meet
[http://www.tandfonline.com/doi/full/10.3109/15360288.2012.708392] : Lyndsey
Brahm writes about the cultural immersion that she experienced when she visited
the east from the west.
* They Suffer in Silence
[http://www.tandfonline.com/doi/full/10.3109/15360288.2012.679336] : Savita
Butola writes about the intensity of grief, related to life-limiting disease in
the developing world.
* Pain – When It Affects the Person
[http://www.tandfonline.com/doi/full/10.3109/15360288.2011.625469] : the impact
of pain on the body and mind, written by Edassery Divakaran
NEWS FROM AROUND THE WORLD
* UN report highlights palliative care for children as a right
– ICPCN Blog
* Budget cuts threaten AIDS and tuberculosis control in India
– The Lancet
* Pull down barriers, let life roll on smoothly
– The Hindu
* A gentle push with half-way homes
– The Hindu
* Little Stars: Japan Prize Finalist
[http://www.littlestars.tv/news/little-stars-japan-prize-finalist/] – Little
* Remembering Austin
* Citizens pick 50 spots to be made disabled-friendly after the PM’s
Mann Ki Baat
– India Today
* Under Pressure, Hospitals Push Physicians To Improve Their Bedside
* The Rituals of Modern Death
– New York Times
* How doctors and nurses are ‘walking on by’ as patients are dying
– Daily Mail
* My dad’s death was nothing like I imagined
[http://www.pbs.org/newshour/updates/dads-death-nothing-like-imagined/] – PBS
* Palliative care for people with dementia in Wales
THE REAL FEAR [HTTP://PALLIUMINDIA.ORG/2015/09/THE-REAL-FEAR/]
My friend, who now has cancer, sits in front of me smiling. We have
been talking about things deep inside her. I ask her, “Are you afraid?” She
hesitates a moment and then says, “Yes.”
“What are you afraid of?” I ask. She is silent.
“Is it the cancer? Is it the treatment? Or suffering? Or death?” She
continues to smile. And then she says, “I am not afraid of cancer. But I am
afraid of the suffering that may come with treatment. I am not afraid of death.
But I am afraid of being dependent.”
Indeed, when we go deep into it, none of us wants to be a burden to
others. Nevertheless, that is one thing that 85-90% of us – the ones that are
not blessed with a sudden death – will have eventually to deal with.
Read this article in the Guardian
– truly verbalising the fear.
MAYBE, ACCEPTING THE FACT OF BEING DEPENDENT SOME DAY, OF BEING ABLE TO SAY,
“OKAY, SO I AM A BURDEN. YES. I ACCEPT THAT,” MAY BE ONE STEP IN THE RIGHT