Pallium India Newsletter: (Test) [Pallium India] New Post : July 2011

Pallium India
Care Beyond Cure


* ~~~~~~~~~ *
! July 2011 !
* ~~~~~~~~~ *
http://palliumindia.org/2011/07/july-2011/
July 31, 2011

         

DEAR FRIENDS,

         [http://www.un.org/en/ga/president/65/issues/ncdiseases.shtml] 

        A SPECIAL CALL TO ACTION – Send a letter to highlight pain management 
for the United Nations NCD Summit Outcomes Document. 

        This September 19-20, Heads of State are meeting together at the United 
Nations (UN) Headquarters in New York City to discuss ways to prevent and 
control non-communicable diseases (NCDs). This meeting is a landmark event 
within global health and development. 

        This week, countries’ Permanent UN Mission Offices, working alongside 
Ministries of Health and External Affairs, are in the final stage of 
negotiation for the UN NCD Summit Outcomes Document. The summit outcomes 
document will provide a strategic framework for countries and global donors to 
follow when allocating resources to address NCDs. Pallium India supports the 
overall NCD Alliance efforts and we are working with the Indian UN Permanent 
Mission office to ensure that the pain and palliative care message is made 
strongly and clearly. We simply can’t afford for pain management and palliative 
care to be watered-down or worse, not mentioned specifically in the final 
document. 

        Pallium India sent the attached letter with detailed palliative care 
language for the UN NCD Summit document. 

        We request you to download the letter we sent, freely use the text from 
the letter, personalize it, and then email and fax the letter to the individual 
country’s UN Mission Office and ministry of health. If you are agreeable, 
please keep the 4 “asks” intact (from the letter) so that we’re all asking for 
the same thing. If possible, also email/fax the attached pdf that provides our 
Priority Pain and Palliative Care Language for the UN Summit. I hope you will 
be able to catalyse this with as many countries as possible. 
        * Lettter to Health Minister Azad for PC partners 
[http://palliumindia.org/cms/wp-content/uploads/2011/07/Ltr-to-Health-Minister-Azad-for-PC-partners-22-July-2011.docx]
  (.doc) 
        * Priority Palliative Care Language for UN NCD Summit 
[http://palliumindia.org/cms/wp-content/uploads/2011/07/Priority-Palliative-Care-Language-for-UN-NCD-Summit-Doc-17-July-2011.pdf]
  (.pdf) 

        - 

PALLIUM INDIA-USA WINS AN AWARD! 
[HTTP://PALLIUMINDIA.ORG/2011/07/PALLIUM-INDIA-USA-WINS-AN-AWARD/] 

         

        We had reported 
[http://palliumindia.org/2011/07/sevathon-2011-a-winner/] to you about the 
Sevathon [http://www.indiacc.org/sevathon] on 17 July. Now we are glad to bring 
to you this piece of good news. 

        At a post–Sevathon function at the India Community Center,  Pallium 
India-USA [http://palliumindia.org/about/usa/] won the award for the BEST 
NEWBIE ORGANIZATION that made the biggest impact. 

CONGRATULATIONS, DR JERINA KAPOOR AND TEAM! WELL DONE!

        - 

SHARE TO CARE: JUDITH & JOHN SMITH’S 40TH WEDDING ANNIVERSARY 
[HTTP://PALLIUMINDIA.ORG/2011/07/SHARE-TO-CARE-JUDITH-JOHN-SMITHS-40TH-WEDDING-ANNIVERSARY/]
 

        Judith and John Smith will be celebrating their 40th wedding 
anniversary next month; guess who get the gifts? They have written to their 
friends to help them celebrate the happy event by donating to Pallium India! 

        Judith and John’s pledge to Share to Care is enhanced by teaming up 
with the UK’s  Shoe Zone Trust [http://www.shoezone.com/ShoeZoneTrust] so that 
Gift Aid [http://www.justgiving.com/info/gift-aid] can be applied to their 
friends’ donations. You can read Judith’s letter below. 

        _WHAT A KIND AND MARVELOUS THOUGHT, JUDITH AND JOHN. WE ARE SO GRATEFUL 
TO YOU AND YOUR FRIENDS! THANK YOU!_ " 

JUDITH AND JOHN SMITH’S RUBY WEDDING CELEBRATIONS

        I am a nurse specialist in palliative care currently working in 
education in a hospice in Leicestershire. My association with palliative care 
in Kerala started in 2004, when I spent 5 months at the Institute of Palliative 
Medicine in Calicut. 

        My main role was teaching the nurses on the six week Palliative Care 
Introductory Course. I fell in love with India and have returned three times to 
teach and get to know this wonderful place and the lovely people in Kerala. 

        The need for palliative care education is great as there is so much 
suffering which needs alleviating. Millions of patients live and die in great 
agony that could easily be prevented. Pain relief from morphine is not always 
easy to access and many people are still dying in pain in India. The 
professionals caring for dying patients are so keen to learn and their 
enthusiasm, dedication and capacity to improve care is really impressive. 

        The charity PALLIUM INDIA works out of Trivandrum and it was here that 
I spent three weeks on my last trip to India, where I was again teaching nurses 
on the Introduction to Palliative Care course. 

        £18.74 WILL PAY FOR A PATIENT’S PALLIATIVE CARE NEEDS FOR TEN DAYS SO 
AS YOU CAN SEE A LITTLE GOES AN AWFULLY LONG WAY! 

        For this reason, John and I have asked our family and friends who are 
coming to help us celebrate our 40 years of marriage in August to donate to 
Pallium India rather than give us any gifts. 

        THE BEST GIFT WE CAN GET IS TO SEE SOME IMPROVEMENT IN THE CARE GIVEN 
TO THOSE SUFFERING IN THEIR LAST DAYS BY THE DEDICATED STAFF IN TRIVANDRUM." 

        - 

CONGRATULATIONS, KAVYA [HTTP://PALLIUMINDIA.ORG/2011/06/CONGRATULATIONS-KAVYA/] 

         

        We congratulate Ms Kavya G Nath from Kottayam district in Kerala for 
her distinguished success in her Secondary School Leaving Certificate ( SSLC 
[http://en.wikipedia.org/wiki/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 [http://palliumindia.org/about/] for 
education till the students’ studies have come to a natural conclusion and the 
person has started to earn. 

        At the “ Share to Care [http://palliumindia.org/sharetocare/] ” 
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.

        - 

GRASEBY SYRINGE DRIVER EXCHANGE PROGRAMME 
[HTTP://PALLIUMINDIA.ORG/2011/07/GRASEBY-SYRINGE-DRIVER-EXCHANGE-PROGRAMME/] 

        Australia’s  phase-out 
[http://www.palliativecare.org.au/Default.aspx?tabid=1986] of Graseby syringe 
drivers [http://www.smiths-medical.com/catalog/syringe-pump/] , with the 
introduction of alternatives, will mean that a significant number of these 
syringe drivers will have no use within the country. 

        A new initiative by the  Asia Pacific Hospice Network 
[http://www.aphn.org/] (APHN) and Palliative Care Australia 
[http://www.palliativecare.org.au/] (PCA) aims to redistribute these useful 
devices to palliative care services in the Asia/Asia Pacific region. 

         DOWNLOAD APPLICATION FORM HERE… 
[HTTP://PALLIUMINDIA.ORG/CMS/WP-CONTENT/UPLOADS/2011/07/APHN-PCA-SYRINGE-DRIVER-EXCHANGE-PROGRAMME.DOC]
 

        If your palliative care institution or service is an APHN 
Organisational Member, then you are eligible to apply. Successful applicants 
will be connected to a donor service in Australia by PCA. 

        - 

LITTLE DROPS OF WATER MAKE THE MIGHTY OCEAN 
[HTTP://PALLIUMINDIA.ORG/2011/07/LITTLE-DROPS-OF-WATER-MAKE-THE-MIGHTY-OCEAN/] 

        IT DOES NOT MATTER WHETHER YOU APPROACH THIS PROVERB AS A PHYSICAL FACT 
OR AS A PHILOSOPHICAL STATEMENT. Alan and Val Phillips have given us a visible 
demonstration of the principle. 

        Recently, the Reserve Bank of India 
[http://www.rbi.org.in/scripts/NotificationUser.aspx?Id=6287&Mode=0] decided to 
withdraw small denomination coins 
[http://www.dnaindia.com/mumbai/report_rbi-to-withdraw-coins-of-25-paise-denomination-next-month_1558818]
 of 25 paise or less. One could take the coins to the bank and encash them 
before a certain deadline, but friends, most of us would not bother, right? 

         

        Alan and Val did something different. They had containers placed in 
many places where people were asked to drop their small denomination 
coins. Recently, they brought all the coins to us – quite a sackful! 

        We took it to the bank and got more than RS1,300. That is not a small 
amount for us. It takes care of the palliative care expenses of a patient for 
about 10 DAYS! 

        Alan reminds us that the members of the Rotary Club (Suburban) of 
Trivandrum [http://rotarycluboftrivandrum.com/] and the foreigners living in 
and around Kovalam helped. Thank you all, dear friends. 

VAL AND ALAN HAVE GIVEN US A LESSON ON THE NEED TO BE INNOVATIVE AND, ABOVE 
ALL, SHOWN THAT THEY CARE. THANK YOU!

        * If Val and Alan have inspired you, don’t forget to pledge to our 
“Share to Care” programme… [http://palliumindia.org/sharetocare/] 

        - 

APHC AT PENANG [HTTP://PALLIUMINDIA.ORG/2011/07/APHC-AT-PENANG/] 

         

        The Asia Pacific Hospice and Palliative Care Network 
[http://www.aphn.org/] (APHN) had its biennial conference at Penang 
[http://www.aphc2011.org/] from 14-17 July 2011 in partnership with Malaysian 
Hospice Council. 

        Everyone was all praise for the excellent organization under the 
leadership of Dato Dr D Devaraj. The theme of the conference was “PALLIATIVE 
CARE IN MAINSTREAM MEDICINE”. 

        While palliative care is very well-developed in some countries in the 
region, it is virtually non-existent in many countries of the region and we 
hope this conference and the continued work of APHN will help to improve the 
situation. 

        APHN will continue to work under the leadership of its chairman Dr 
Cynthia Goh, the honorary secretary Dr Ednin Hamzah. Professor Tetsuo Kashiwagi 
from Japan and Dr M.R.Rajagopal from India will be the co-chairs. 

        The next Asia Pacific Hospice Conference will be held in Taipei, Taiwan 
in 2013. 

        - 

CANKIDS – PALLIUM INDIA TRAINING WORKSHOP ON PEDIATRIC PALLIATIVE CARE 
COUNSELING 
[HTTP://PALLIUMINDIA.ORG/2011/07/CANKIDS-PALLIUM-INDIA-TRAINING-WORKSHOP-ON-PEDIATRIC-PALLIATIVE-CARE-COUNSELING/]
 

         [http://cankidsindia.org/workshop2011.html] 

         CanKids…KidsCan [http://cankidsindia.org] in New Delhi organized a two 
day workshop on Pediatric Palliative Care Counseling 
[http://palliumindia.org/2011/07/counseling-emotional-support-in-pediatric-palliative-care/]
 on 15-16 July 2011. 

        Pallium India’s Senior Medical Social Worker Ms Aneeja Mariam Joseph 
from Trivandrum Institute of Palliative Sciences, Dr Anjay Babu of CanKids and 
Ms Shalini Narayan from Fortis Hospital were key speakers at the program. 

THERE WERE 45 ATTENDEES! CONGRATULATIONS, CANKIDS TEAM!

"

         

        CanKids organized its 3rd Pediatric Palliative Care Workshop 
[http://cankidsindia.org/workshop2011.html] specifically focusing on counseling 
& communication in New Delhi, on the 15rd & 16th July, 2011. 

        This 3rd workshop was a step ahead towards improving our 
services specifically focusing on Pediatric Palliative counseling & 
communication to build a greater knowledge of current psychological care 
practices with a special focus on ways to promote the psychological well-being 
of child cancer patients and their families  in Indian setting. 

        Through this workshop, we explored the challenges most relevant to 
working with cancer-affected children in distress. 

         

        The workshop was provided by experts like Ms. Aneeja Joseph (main 
speaker), MSW from Pallium India, Dr. Anjay B. Cankids Pediatric Palliative 
care physician, and Guest speaker Ms.Shalini Narayan, Psychologist, Fortis 
Hospital.  It was attended by 45 participants (approx.) from different 
organisations like CanKids, DNip Care, GCCI, Holy family hospital and other 
individuals. 

        The primary topics of discussion and highlights of the workshop were: 
        * Understanding what palliative care is all about: “It’s not about 
dying, It’s about helping children and families to live to their fullest while 
facing complex medical conditions” or “Adding life to days rather than adding 
days to life” 
        * The concept of Pain and incorporating counseling in pain 
management “Pain is under-reported, under recognised and often under-treated, 
but We Can Change These” 
        * How to disclose/break the bad news for “how you tell it makes a lot 
of difference” 
        * Bereavement Care – how to deal with it & do’s and don’ts. 

        Also sessions on when to reach the experts/hand over the case, Self 
care – “Look Within Yourself” or burnout were much sort after and appreciated 
by the attendees. 

         

        The workshop was a huge success and a great learning experience for all 
the attendees as one of our  participant from DNip care 
[http://www.dnipcare.org/] provided us his feedback saying _“IT WAS AN 
EXCELLENT EXPERIENCE, WHILE I LEARNT THE BASIC FACTS ABOUT PREPARING/EQUIPPING 
THE CARE GIVERS OR VOLUNTEERS TO TAKE CARE OF THE PATIENTS.”_ 
        * Download PDF with more pictures 
[http://palliumindia.org/cms/wp-content/uploads/2011/07/CanKids-PI-Workshop-July2011.pdf]
 " 

        - 

DOCUMENTARY: FREEDOM FROM PAIN 
[HTTP://PALLIUMINDIA.ORG/2011/07/DOCUMENTARY-FREEDOM-FROM-PAIN/] 

         “Freedom from Pain” 
[http://palliumindia.org/2011/07/documentary-freedom-from-pain/] is a 
documentary from students at the University of British Columbia School of 
Journalism [http://www.internationalreporting.org/pain] , in partnership with 
Al Jazeera. 

        The documentary includes scenes filmed at Pallium India and aired 
internationally on Al Jazeera’s People & Power 
[http://english.aljazeera.net/programmes/peopleandpower/2011/07/2011720113555645271.html]
 series last week. Watch on our website… 
[http://palliumindia.org/2011/07/documentary-freedom-from-pain/] " 

UNIVERSITY OF BRITISH COLUMBIA DOCUMENTARY SHOWS HIDDEN HUMAN RIGHTS CRISIS OF 
MEDICAL PAIN

        For much of the Western world, physical pain ends with a simple pill. 
Yet more than half the world’s countries have little to no access to morphine, 
the gold standard for treating medical pain. 

         Freedom from Pain [http://www.internationalreporting.org/pain] shines 
a light on this under-reported story. “For a victim of police torture, they 
will usually sign a confession and the torture stops,” says Diederik Lohman of 
Human Rights Watch in the film. “For someone who has cancer pain, that 
torturous experience continues for weeks, and sometimes months on end.” 

        Unlike so many global health problems, pain treatment is not about 
money or a lack of drugs, since morphine costs pennies per dose and is easily 
made. The treatment of pain is complicated by many factors, including drug 
laws, bureaucratic rigidity and commercial disincentives. 

        IN INDIA, THE FIRST STOP IN THE FILM AND THE WORLD’S LARGEST GROWER OF 
MEDICINAL POPPY FOR DEVELOPED COUNTRIES, THERE ARE SEVERE RESTRICTIONS TO THE 
USE OF MORPHINE DOMESTICALLY. IN 27 OUT OF 28 STATES IN INDIA, NARCOTICS LAWS 
ARE SO STRICT THAT DOCTORS FEAR PRESCRIBING IT, AND PATIENTS LITERALLY SCREAM 
FOR RELIEF. DRUG COMPANIES HAVE LITTLE INCENTIVE TO MANUFACTURE MORPHINE FOR 
THE DOMESTIC MARKET BECAUSE OF REPORTING REQUIREMENTS AND SMALL PROFIT MARGINS. 

        In the Ukraine, the film reveals that access to pain medication is 
halted by outdated, Soviet-style bureaucracy, arbitrary limits on doses, and a 
lack of oral morphine. As a result, many patients experience prolonged bouts of 
untreated pain, particularly in rural areas. In the Ukraine, we learn that 
Artur, a former decorated KGB colonel suffering from prostate cancer, sleeps 
with a gun under his pillow – his only way out, should he decide his pain is 
too great. 

        Nadia, a single mother living in Kiev, tells of the anguish of living 
with a son in constant pain. Vlad, her son, was diagnosed with terminal cancer 
and sent home from the hospital with nothing but the meagre government dose of 
pain killers. Nadia recounts how his agony grew to the point where he once 
attempted suicide, nearly throwing himself from a fourth story window. It would 
be another three long years of mother and son battling with severe pain until 
Vlad died. 

        Until the Ukrainian leadership acts to remove the barriers to 
palliative care, it falls to defiant individuals like Sergey Psiurnyk, a 
modern-day Robin Hood, to ensure that suffering people get the morphine they 
need.
Riding with Psiurnyk as he makes his rounds, he says he risks years in jail to 
collect morphine from sick people who do not need it and deliver it to people 
who do. 

        Overall, Freedom from Pain reveals that bureaucratic hurdles, and the 
chilling effect of the global war on drugs, are the main impediments to a pain 
free world. Patients will continue to suffer until global bodies actively work 
with countries to exclude medical morphine from the war on drugs, and change 
the blunt drug laws that curtail access to legitimate medical opiates 
worldwide. Uri Fedotov, the executive director of the United Nations Office of 
Drugs and Crime, admits in the film that the war on drugs is cutting people off 
from pain medication, but offers little in the way of concrete proposals for 
changing the status quo. 

        Lohman points out that inertia may be the greatest obstacle to 
improving access to morphine, and that pressure brought by doctors and human 
rights activists is critical to getting pain medication to the people who need 
it. That is what happened in Uganda, the final stop in the film. Dr Jack Jagwe, 
who served in that war-torn country’s health ministry in the 1990s, worked 
closely with foreign doctors and the international community to put into 
writing that every citizen there should have the right to palliative care – a 
first in Africa. 

        Uganda also changed its laws to allow nurses in rural areas to 
prescribe morphine – another first. Today, they visit people in pain and 
administer liquid morphine without any doctor’s involvement. UGANDA IS SEEN AS 
A POTENTIAL MODEL FOR PAIN TREATMENT, BUT MOST IMPROVEMENTS AROUND THE WORLD 
HAVE BEEN SMALL AND LOCALISED, RESULTING FROM THE EFFORTS OF “ENTERPRISING 
ENTREPRENEURS” LIKE DR M. R. RAJAGOPAL, A PIONEER OF PALLIATIVE CARE. IN INDIA, 
MEDICAL MORPHINE IS READILY ACCESSIBLE ONLY IN THE SMALL STATE OF KERALA 
BECAUSE OF HIS UNCEASING EFFORTS. 

        WITH THE HELP OF HIS COLLEAGUES AND THE COOPERATION OF THE STATE DRUG 
CONTROLLER, RAJAGOPAL LED THE PUSH TO CREATE A STREAMLINED OPERATING PROCEDURE 
FOR MORPHINE LICENSING IN KERALA. NOW PATIENTS IN DESPERATE NEED OF PAIN DRUGS 
HAVE ACCESS AND DOCTORS DO NOT FEAR STRICT PENALTIES. RAJAGOPAL, WHO HAS HELPED 
CREATE A MODEL FOR THE REST OF INDIA, SAYS WHAT IS DESPERATELY NEEDED IS 
“SYSTEMATIC EVALUATION OF THE PROBLEM … IN THE DEVELOPING WORLD, AND AN ACTION 
PLAN AIMED AT OVERCOMING IT”." 

        - 

19TH INTERNATIONAL CONFERENCE OF THE IAPC WILL BE HELD IN KOLKATA 
[HTTP://PALLIUMINDIA.ORG/2011/07/19TH-INTERNATIONAL-CONFERENCE-OF-THE-IAPC-WILL-BE-HELD-IN-KOLKATA/]
 

         

        From Dr. Nagesh Simha, President, Indian Association of Palliative Care 
[http://www.palliativecare.in/index.php] : "

        I am delighted to inform you that the 19TH INTERNATIONAL CONFERENCE OF 
THE IAPC [HTTP://WWW.PALLIATIVECARE.IN/CONFERENCES.PHP] will be held in 
Kolkata, 10-12 February 2012. 

        The theme is “EDUCATION, TRAINING AND RESEARCH IN PALLIATIVE CARE”. 
        * REGISTRATION DEADLINE: 31 JULY 2011 
        * Abstract submission deadline: 31 NOVEMBER 2011 

         Registration [http://www.iapckolkata2012.org/registration.html] fees 
(50% reduced rates before 31 July 2011): 
        * Doctors: Member, INR 2,000 / Non-member, INR 3,000 
        * Post graduates: INR 1,500 
        * Nurses & Volunteers: INR 1,000 
        * Spouse/children: INR 1,500 

FULL DETAILS & REGISTRATION FORMS ARE AVAILABLE AT THE IAPC KOLKATA 2012 
WEBSITE… [HTTP://WWW.IAPCKOLKATA2012.ORG/] 

" 

        - 

LIFE BEFORE DEATH SERIES CONTINUES 
[HTTP://PALLIUMINDIA.ORG/2011/07/LIFE-BEFORE-DEATH-11-DEPENDENCE-VERSUS-ADDICTION/]
 

        The “Life Before Death” series of short movies continue to be released 
one every week. They are not only very informative to the public; but also make 
powerful advocacy material for the palliative care community. 

        Thank you, Mike Hill and team of Moonshine Movies and thank you, Lien 
foundation,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. 

         We’ll be posting the series on our website each week 
[http://palliumindia.org/tag/life-before-death/] . For more information visit 
the Life Before Death website… [http://www.lifebeforedeath.com/movie/] 

        - 

25 DOCUMENTS YOU NEED BEFORE YOU DIE 
[HTTP://PALLIUMINDIA.ORG/2011/07/25-DOCUMENTS-YOU-NEED-BEFORE-YOU-DIE/] 

        Useful guide by Saabira Chaudhuri 
[http://wsjfellowship.com/2010/04/this-years-winner-saabira-chaudhuri/]  in 
the Wall Street Journal. The article covers areas such as wills, proof of 
ownership, bank accounts, health-care, life insurance, retirement, marriage 
documents and why you should prepare a “Death Dossier”: " 

[HTTP://ONLINE.WSJ.COM/ARTICLE/SB10001424052702303627104576410234039258092.HTML]
 THE 25 DOCUMENTS YOU NEED BEFORE YOU DIE 
[HTTP://ONLINE.WSJ.COM/ARTICLE/SB10001424052702303627104576410234039258092.HTML]
 

        It isn’t enough simply to sign a bunch of papers establishing an estate 
plan and other end-of-life instructions. You also have to make your heirs aware 
of them and leave the documents where they can find them. 

        [..] The financial consequences of failing to keep your documents in 
order can be significant. According to the National Association of Unclaimed 
Property Administrators, state treasurers currently hold US$32.9 billion in 
unclaimed bank accounts and other assets. 

        Most experts recommend creating a comprehensive folder of documents 
that family members can access in case of an emergency, so they aren’t left 
scrambling to find and organize a hodgepodge of disparate bank accounts, 
insurance policies and brokerage accounts. 

         READ THE FULL ARTICLE HERE… 
[HTTP://ONLINE.WSJ.COM/ARTICLE/SB10001424052702303627104576410234039258092.HTML]
 " 
        * UPDATE: There’s a followup article, “ Read This Before You Die 
[http://online.wsj.com/article/SB10001424052702304793504576430043844930236.html]
 “ 

        - 

ARE YOU PREPARED? [HTTP://PALLIUMINDIA.ORG/2011/07/ARE-YOU-PREPARED/] 

         
[http://palliumindia.org/cms/wp-content/uploads/2011/07/Hospice-training.jpg] 

        IN THE UNITED STATES TODAY, A QUARTER TO A HALF OF ALL DEATHS TAKE 
PLACE IN HEALTH CARE FACILITIES. Numerous studies have documented critical 
deficits in the medical care of the dying; it has been found to be 
unnecessarily prolonged, painful, expensive, and emotionally burdensome to both 
patients and their families. Yet, not enough people make the proper 
preparations to protect themselves. One easy way is to prepare and Advance 
Healthcare Directive 
[http://en.wikipedia.org/wiki/Advance_health_care_directive] . This is a legal 
document that makes your wishes known if you were ever to become incapacitated 
and unable to make crucial healthcare decisions for yourself. 

        THIS MONTH, PALLIUM INDIA-USA MEMBERS WERE TRAINED IN HOW TO BRING THIS 
AWARENESS AND KNOWLEDGE TO THE COMMUNITY. It was given July 20, by Jeanne Wun, 
Outreach Director of our partner Hospice of the Valley 
[http://hospicevalley.org/] . In this informative and lively interactive 
session, we learned how to best talk to the community about this sometimes 
sensitive issue. Ultimately, it is about each person having a say in perhaps 
the most important medical decision they might make in his or her life. We now 
plan a speakers bureau so that we are able to talk in various languages to the 
community, thus ensuring no one is left unprotected. 

        - 

INTERNATIONAL PALLIATIVE CARE NETWORK POSTER EXHIBITION 2011 
[HTTP://PALLIUMINDIA.ORG/2011/07/INTERNATIONAL-PALLIATIVE-CARE-NETWORK-POSTER-EXHIBITION-2011/]
 

         Palliative Care Network Community 
[http://www.pcn-e.com/community/pg/profile/Posters2011] (PCNC) will host the 
International Palliative Care Network Poster Exhibition 2011 
[http://www.pcn-e.com/community/pg/profile/Posters2011] . 

        Participation is free and all Palliative Care Professionals are invited 
to submit to the online poster exhibition. Lead authors of all accepted posters 
will receive an e-certificate. The 1st, 2nd and 3rd awardees will receive 
US$500, US$300 and US$200, respectively. Best poster from Africa will be 
awarded $300, sponsored by FHSSA. 

        Submission deadline is August 31, 2011. For details of this year’s 
competition, please visit:  www.palliativecarenetwork.com 
[http://www.pcn-e.com/community/pg/profile/Posters2011] 

        Institutions, Organizations and Commercial vendors are invited to 
create virtual booths for free. For details, please contact 
posters2011@xxxxxxxxxxxxxxxxxxxxxxxxx by August 10, 2011. 

        PALLIUM INDIA’S DR SITHARA RAMAN AND DR SURAJ HAD WON THE THIRD PRIZE 
[HTTP://WWW.PCN-E.COM/COMMUNITY/PG/FILE/READ/488444/22-REHABILITATION-AS-PART-OF-PALLIATIVE-CARE-IN-KERALA-INDIA]
 LAST YEAR, VIEW IT ON OUR SITE… 
[HTTP://PALLIUMINDIA.ORG/2011/07/INTERNATIONAL-PALLIATIVE-CARE-NETWORK-POSTER-EXHIBITION-2011/]
 

        GUESS WHAT THEY DID WITH THE PRIZE MONEY? YES, YOU GUESSED RIGHT. THE 
MONEY WENT TO PALLIUM INDIA FOR BUYING MEDICINES FOR FREE PATIENTS. 

        - 

BURSARIES IN PALLIATIVE CARE FOR AFRICA 
[HTTP://PALLIUMINDIA.ORG/2011/07/BURSARIES-IN-PALLIATIVE-CARE-FOR-AFRICA/] 

         [http://www.hospicecare.com/ts/] This is heartening. The International 
Association for Hospice and Palliative Care [http://www.hospicecare.com/ts/] 
(IAHPC) calls for applications for a bursary scheme to support palliative care 
in sub-Saharan Africa. This program is made possible thanks to a grant from the 
Diana Princess of Wales Memorial Fund 
[http://www.theworkcontinues.org/landing.asp?id=3] ‘s Palliative Care 
Initiative. 

        Individuals living and working in Ethiopia, Kenya, Malawi, Rwanda, 
South Africa, Tanzania, Uganda, Zambia and Zimbabwe are eligible to apply. 

        Bursaries will be awarded in two categories: 

        * POSTGRADUATE QUALIFICATION COURSES IN PALLIATIVE CARE: Courses need 
tobe in institutions which are government accredited and academically 
affiliated and for post graduate level leading to a certified and government 
recognized formal degree (ie Distance Learning Diplomas, MSc/MPhil). 
        * RESEARCH COURSES: On basic research and methodology, including study 
design, statistical tools, statistical analysis and applicability, writing 
grant applications for research and preparing a paper for publication in 
peer-reviewed journals. 

        Applications must be received THREE (3) MONTHS in advance of the course 
starting date. Preference will be given to individuals applying for courses 
based in Africa. Applicants may only apply for one of the two bursaries. 

         TO LEARN MORE ABOUT THE CRITERIA, DESCRIPTION OF THE BURSARIES AND HOW 
TO APPLY, VISIT IAHPC WEBSITE… [HTTP://WWW.HOSPICECARE.COM/TS/] 

        The Diana Princess of Wales Memorial Fund’s Palliative Care Initiative 
[http://www.theworkcontinues.org/landing.asp?id=3]  is “committed to spending 
up to £10 million to promote the scale-up of palliative care in sub-Saharan 
Africa. The desired outcome is that palliative care is accepted as an essential 
part of, and integrated into, the care and treatment of people with HIV/AIDS, 
cancer and other life-limiting illnesses.” 
        * Frontline Palliative Care: Learning from the Kenyan Experience 
[http://www.theworkcontinues.org/page.asp?id=1477] : 
        * Evaluation of Kitovu Mobile Palliative Care Service, Masaka, Uganda 
[http://www.theworkcontinues.org/downloaddoc.asp?id=168] (pdf) 

        - 

ON THE SHORES OF GANGA PREM 
[HTTP://PALLIUMINDIA.ORG/2011/07/ON-THE-SHORES-OF-GANGA-PREM/] 

        A report from Pallium India’s Senior Administrator, Dr. C Mohanan: "

         

ON THE SHORES OF GANGA PREM

        Pallium India staff may remember Sicily Sebastian 
[http://palliumindia.org/2010/07/palliative-care-updates-from-rishikesh/] who 
came for Cerificate Course in Palliative Nursing 
[http://palliumindia.org/courses/ccpn/] from Ganga Prem Hospice 
[http://www.gangapremhospice.org/] (GPH) a year ago. 

        It was during a private visit to Rishikesh recently that I met her with 
her husband Sebastian who workwise is Pallium India’s Chandran in GPH. When 
Sicily was asked to go for the training, it seems, she like many others  
protested – _“I KNOW ALL NURSING; WHY  ANOTHER TRAINING NOW?”_ And now she says 
_“I KNEW NOTHING; GIVEN A CHANCE, I WILL GO AGAIN”_ 

        The idea of this hospice was conceived and implemented by Dr Ajay Dewan 
of the Rajiv Gandhi Cancer Institute [http://www.rgci.org/] , New Delhi, who is 
also the Medical Director of the GPH. The GPH is now working in old partly 
defunct hospital in Rishikesh, the holy town of so many ashrams and temples. An 
English lady, now an Indian citizen based in Uttar Kashi, popularly known as 
‘Nani Ma’ is running the day to day operations. Near Rishikesh, they have 
already bought a  piece of land and plan to have a building of their own in the 
near future. 

         

        Though christened a hospice, only home visits and monthly cancer camps 
are taking place now. The main block for full fledged activities is the 
difficulty to get a full time doctor. But the encouraging thing is that home 
visits have increased from just one patient to 29 in one year. Each patient is 
seen up to twice a week. Conceding to their request, I joined the team and 
visited a few patients in Haridwar, Rishikesh and Dehradun and attended their 
camps as well. Patients and relatives by and large are satisfied. A medical 
team visiting and offering consolation and distributing free medicines is a new 
experience for them. 

        A monthly camp is conducted at GPH in Rishikesh for cancer detection 
and for treatment guidance. 60 to 90 patients attend these camps. In a special 
camp in Dehradun on 24th June Oncology surgeons from Apollo Hospital 
[http://www.apollohospitals.com/] and Rajiv Gandhi Cancer Institute examined 
the patients  and prescribed treatment. About 70 patients attended the camp. 
The need for a palliative care physician was felt in the camps. 

        I had discussions with a few members of the GPH team about their 
immediate problems and future course of action. Mr Anil Gupta, a soft spoken 
humble computer engineer is the manager who coordinates activities in 
Rishikesh. Ms Pooja based in Delhi is a good PRO who gets a lot of free 
medicines and accessories for the home visit team. She is also in charge of 
their e-news letter. 

         

        Despite their limitations , they are doing some excellent work in this 
field. However they are yet to venture into areas like awareness programs, 
volunteers training,  link centres, educational support for children, 
rehabilitation programs etc. Though confined to cancer patients at present, 
they may have to enlarge the field to include other patients suffering from 
incurable and debilitating diseases. 

        GPH is the first palliative care venture in Uttarakhand state. As such 
they have to prepare themselves to guide future palliative care units in the 
state. I understand they are capable of mobilising enough funds and personnel 
and with proper planning and guidance they can surely become the flagship of 
all palliative care services in the state. 

        _I WISH THEM WELL,_
Dr. C Mohanan
Senior Administrator, Pallium India" 

        - 

UK REPORT: ‘STUNNING INEQUITIES’ IN END-OF-LIFE CARE 
[HTTP://PALLIUMINDIA.ORG/2011/07/UK-REPORT-STUNNING-INEQUITIES-IN-END-OF-LIFE-CARE/]
 

        The UK’s Palliative Care Funding Review 
[http://palliativecarefunding.org.uk/] , commissioned by the new Coalition 
Government, was published this month. The report has been received well by 
health charities, an open letter was published in The Guardian:  Crucial chance 
to improve palliative care 
[http://www.guardian.co.uk/society/2011/jul/01/chance-to-improve-palliative-care]
 

        The report estimates that thousands of people in the UK miss out on 
palliative care each year. The report also highlights the inequity within the 
UK using figures from one primary care trust that spent approximately £186 per 
death while another spent £6,213. "

         
[http://palliativecarefunding.org.uk/wp-content/uploads/2011/06/PCFRFinal%20Report.pdf]
 

THE RIGHT CARE AND SUPPORT FOR EVERYONE [HTTP://PALLIATIVECAREFUNDING.ORG.UK/] 

        In the report, we recommend the introduction of the first per-patient 
funding system for palliative care in the NHS. Our proposals include the 
development of a palliative care tariff based on need, a funding system which 
incentivises good outcomes for patients, irrespective of time and setting, and 
providing incentives for commissioning integrated care packages which stimulate 
community services.
The review’s recommendations have three key aims: 

        * To create a fair and transparent funding system 
        * To deliver better outcomes for patients 
        * To provide better value for the NHS 

DOWNLOAD THE FULL REPORT HERE… 
[HTTP://PALLIATIVECAREFUNDING.ORG.UK/WP-CONTENT/UPLOADS/2011/06/PCFRFINAL%20REPORT.PDF]
  (PDF)

" 

        PRESS COVERAGE 
        * BBC Radio, TODAY programme: “Absolutely no clarity’ on end-of-life 
care” [http://news.bbc.co.uk/today/hi/today/newsid_9527000/9527561.stm] 
        * BBC interviews a father: “He died where he wanted to be” 
[http://news.bbc.co.uk/today/hi/today/newsid_9527000/9527600.stm] 
        * The Independent:  “New end-of-life funding plan ‘fair’” 
[http://www.independent.co.uk/life-style/health-and-families/health-news/new-endoflife-funding-plan-fair-2305292.html]
 

QUALITY & EQUITY

        The findings in the report might come as a surprise to some, especially 
if you recall the July 2010 Economist Intelligence Unit report on quality of 
care, where the UK was praised for have “one of the best systems for end of 
life care” [http://www.bbc.co.uk/news/health-10634371] . See our blog post:  
Quality of Death: Ranking End-of-Life Care Across the World 
[http://palliumindia.org/2010/07/quality-of-death-ranking-end-of-life-care-across-the-world/]
 

        - 

PARTING SHOT

"

        “We were so deeply in debt. I knocked on many doors, but none opened. 
We have no one whom we could call our own. I wondered whether there was really 
a God. I decided to end my life. That day you lent a helping hand. My three 
children still have their mother because of you. I do not know how to thank 
you.”" 

        The writer is a palliative care volunteer, the wife of a bed-bound man 
with Motor Neuron Disease. But what made the woman turn to thoughts of suicide 
was not the disease, or the disease-related suffering of the family. It was a 
debt-trap. They were managing to live in their ramshackle hut when the local 
self-Government institution (the Panchayat) gave them a grant for building a 
proper house. As almost invariably happens, the construction costs escalated 
way out of the budget. There seems to be no way they can get out of the trap; 
and they now will lose not only the new unfinished home, but also whatever they 
already had. How will they live? 

        Our organization cannot afford to pay off debts incurred by our 
patients and families. But here was a desperate situation and a few of us 
delved into our own not-so-full pockets and raised some money to tide them over 
the immediate threat of eviction. But this is just one of so many families who 
are in this plight, for whom financial aid or loans from the Government simply 
open the door to a deep financial chasm. 

        The improving financial position of local self-government institutions 
in India causes this paradoxical suffering all too often. There is not enough 
social research to identify the elements of the problem and to seek solutions. 
Indiscriminate aid so often worsens the situation. 

WE MUST TOGETHER FIND A SOLUTION.

ANY IDEAS? [HTTP://PALLIUMINDIA.ORG/CONTACT/] 



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