Pallium India Newsletter: (Test) [Pallium India] New Post : July 2011
- From: Pallium India Newsletter <info@xxxxxxxxxxxxxxxx>
- To: "" <palliumindia@xxxxxxxxxxxxx>
- Date: Sun, 31 Jul 2011 22:44:31 +0000
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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