Care Beyond Cure
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! November 2018 !
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November 1, 2018
GILLY BURN’S VISIT [HTTPS://PALLIUMINDIA.ORG/2018/10/GILLY-BURNS-VISIT/]
Ms Gilly Burn is an amazing person who, in the 80s, travelled the length and
breadth of India, introducing palliative care, finding pioneers, getting them
trained and empowering them for palliative care. She continues to visit and
support the activities of the Indian palliative care community. In October
2018, she visited several places in India including Shillong, Nagpur, Gujarat,
Pondicherry, and conducted sessions on palliative care, and interacted with the
staff and students in different institutes, as part of incorporating palliative
care in the medical curriculum.
_Dr Dinesh Kumar of Pramukhswami Medical College, Karamsad, Gujarat,
writes about Gilly’s visit:_
Ms. Gilly Burn, Director Care Response International and Founder
Director Cancer Relief India from United Kingdom, visited Pramukhswami Medical
College on 20th October.
She had interaction sessions on the topic “Palliative Care in Health
Professional Education”, which were attended by about 100 medical students, 100
Nursing students, 50 faculty and staff. Students asked questions related to
various aspects of palliative care eg. Euthanasia, Collusion, Role of students
in palliative care, Importance of communication, scope of palliative care etc.
One student shared the story of her grandmother’s suffering and death, and the
effect on the family. Gilly’s session was appreciated by everyone and several
students and faculty felt motivated and touched by her words.
She then visited the palliative care OPD and ward; and interacted with
a patient, family and the staff. She also had a meeting with Shri Sandeep
Desai, CEO of Charutar Arogya Mandal (CAM). She provided inputs for the
proposed community based palliative care component of Sparsh programme of CAM.
PALLIATIVE CARE IN HUMANITARIAN CRISIS – FLOOD RELIEF AND REHABILITATION WORK
After the initial flurry of activity, emotional responses and a lot of
public sentiments, the social reaction to the suffering of the million
Keralites affected by the floods in August 2018 seems to be on the wane. But
not on the part of Pallium India, we assure you.
Pallium India, in collaboration with the local community, supports
relief work in the flood-affected areas of Pathanamthitta and Alappuzha
districts. There are different individual and institution based support systems
energizing the team to deliver proper care and support to the needy.
We have reached out to 225 people; many with serious health related
suffering have been provided with all possible services such as distribution of
physical aids, medical support and other psycho-social support.
Our team comprising of Mr Babu Abraham, Mr Lithin Abraham, Ms Gifty
(medical and psychiatry social workers), Ms Shameema (Palliative care nurse)
and Ms Vyshnavi V.K ( Project Officer) is doing remarkable work on the ground,
to reach more people who are in need.
This work could not have been possible without the support of several
generous, kind-hearted donors and volunteers who readily came forward the
moment we asked for assistance. We thank you all, and promise you that we will
continue to do everything we can, to help the needy.
MAJOR ACTIVITIES OF THE MONTH
* Conducted palliative care need assessment survey in different wards
of Chenganoor and Pandanad panchayaths of Alappuzha district.
* Connecting the local needs and patients’ details to the local
government bodies to ensure action.
* Regular house visits and follow-ups by the field work team
* Review meeting held at Taluk hospital, Ranni (Pathanamthitta) with
the palliative nurses.
* Conducted a session on Palliative care for the Panchayat members of
* Provided adequate support in patient care including bed bath and
* Provided essential medicine support (including preventive medicines
such as doxycycline, ORS etc) to the patients who are facing different health
* Support given to a family to shift them from Pathanamthitta to
Trivandrum. Made all the possible arrangements for their child’s education in
* Provided support for house modification to Ms. Omana
* Pallium India social workers and palliative care nurse visited and
assessed the health situation of each ward in Pathanamthitta and Alappuzha
districts with the support of all the available recourses in the community
level.(ASHA workers, PHC palliative care nurses, ward members, panchayath
members and palliative care initiatives of Pathanmathitta and alapuzha
* Gave wheelchairs to Mr. Suresh Kumar, Mr. Arun S, Mr. Sasidharan M.P
and Mr Vijayan Pilla
* Provided Electro larynx (voice box) to Mr.Muhammad in Thrissur.
TELENGANA SET TO EXTEND PALLIATIVE CARE TO ALL DISTRICTS
In a very positive and encouraging development, Telengana state health
authorities have added eight new palliative care centres in several districts
in the last three to four months. Furthermore, the state plans to have a
stand-alone, state-run palliative care centre in each district within a year.
Till recently, end-stage cancer and HIV patients from economically weak
sections have struggled to access healthcare facilities that focus on reducing
physical pain and allow them to live last stages of life with dignity.
Telengana Today reports:
26TH IAPC CONFERENCE AT KOCHI – 8, 9, 10 FEB 2019
The 26th International Conference of Indian Association of Palliative
Care – IAPCONKochi2019 [http://www.iapconkochi2019.com/] – will be held on 8TH,
9TH AND 10TH FEBRUARY 2019 (with a Pre-Conference Workshop on 7th February
2019) at AELI HILLS, KEEZHMADU, ALUVA, ERNAKULAM, KERALA, INDIA.
The Conference theme “VOICES IN PALLIATIVE CARE; ENSURING QUALITY,
CREATING SOLUTIONS” centres around the core palliative care attitude of
listening…to those living with serious health-related suffering and their
families, to our communities, to our palliative care teams, to global
palliative care advocates and to our policy and academic leaders.
ABSTRACTS can be submitted covering the conference theme “Voices in
Palliative Care; Ensuring Quality; Creating Solutions”.
LAST DATE FOR SUBMISSION OF ABSTRACT IS 30TH NOVEMBER, 2018. For more
details, please see: http://www.iapconkochi2019.com/abstract
To Register and for more information, please visit the conference
website: http://www.iapconkochi2019.com/ [http://www.iapconkochi2019.com/]
Follow IAPCONKochi2019 on Facebook:
INTEGRATING PALLIATIVE CARE AND SYMPTOM RELIEF INTO PRIMARY HEALTH CARE
Integrating palliative care and symptom relief into primary health
care: a WHO guide for planners, implementers and managers
[http://apps.who.int/iris/handle/10665/274559] is part of a series of WHO
publications on palliative care. Their objective is not to provide clinical
guidelines, but rather practical guidance on integrating palliative care and
symptom relief into health care systems. It is intended, to assist anyone
involved with planning, implementing, managing or assuring the quality of PHC
to integrate palliative care and symptom control.
Thank you, Dr Michael Minton, for bringing our attention to this
WHO PUBLICATION ON PALLIATIVE CARE:
Please see this excellent WHO publication authored by Elizabeth Davies and
Irene Higginson, available for free download: Palliative Care: The Solid Facts
And see the important message:
“Emerging needs of people living with serious chronic illnesses,
together with new evidence for the effectiveness of palliative care, mean it
must now be offered more widely and integrated more broadly across the health
However, we wish the publication focused more on the needs of the
developing world, simply because the developing world is 80% of the world. How
about those with “serious health-related suffering” due to conditions that are
not chronic in nature? Like the dying person in ICU? Like the child with 50%
burns screaming in pain day in and day out, where no one except the palliative
care person is empowered to provide pain relief and to offer psychosocial
VIDEO OF THE MONTH [#]
There certainly was some magic about it. 120 patients and their
families joined Pallium India team on October 13 to celebrate World Palliative
Care Day at the Magic Planet Magic theme park, Trivandrum. Because everyone
On October 14, TIPC, CET Cycling Club, Indus Cycle Embassy and Pallium
India organised a palliative care awareness ride from Gandhi Park to Manaveeyam
WORLD HOSPICE AND PALLIATIVE CARE DAY EVENT IN DELHI
On the occasion of World Hospice and Palliative Care Day, Pallium India and
Cankids… Kidscan [http://www.cankidsindia.org/] honored Dr Ambika Rajvanshi and
Dr Reena Sharma for the outstanding work being done by CanSupport
[https://cansupport.org/] – Caring for People with Cancer.
The event held at Select CityWalk, New Delhi, also screened
_Hippocratic_ [http://hippocraticfilm.com/] , the documentary film produced by
CIPLA PALLIATIVE CARE & TRAINING CENTRE CELEBRATES 21ST ANNIVERSARY
Cipla Palliative Care and Training Centre (CPC), Pune, celebrated its
21st Annual day on 28 October 2018. The event was attended by patients,
relatives, palliative care providers and friends of the centre. Pallium India’s
volunteer, Ashla Rani, was the Guest of Honour at this function and she
narrated her experience of being both a palliative care recipient and provider.
Dr. Yusuf Hamied, Chairman of Cipla, thanked Ashla for inspiring the
audience with her story of hope, optimism and sense of purpose. Ashla
interacted with the CPC team and explained her role as counsellor at Pallium
India’s half way home for patients with paraplegia and the bereavement support
group. Rumana Hamied, CEO, Cipla Foundation said that Ashla’s participation at
the annual day made the day a very special and meaningful one for the centre
and a reminder for the need of palliative care for all serious illnesses.
Ashla says, “My visit to Cipla Palliative Care center brought back a
lot of memories – how Pallium India accepted me with open arms when I was
rejected by several other organizations, and how I was never judged. No one
asked, ‘what can a person with quadriplegia do?’ No one said, ‘I don’t think
you will be useful with all your limitations.’ I saw the same magic of
palliative care at CPC. I enjoyed every moment of the day spent at CPC and fell
in love with palliative care once again.”
NIRMALA PALLIATIVE CARE CENTRE INAUGURATED
Nirmala Palliative Care Centre, a Division of Health Care Charitable
Society, has started functioning from their premises in Vadavucode, near
Kolenchery in Ernakulam, Kerala. The centre was inaugurated on September 20,
2018, by Dr. D Babu Paul, I.A.S. in the presence of Justice P K Shamsudeen,
Adv. V P Sajeendran, M.L.A, Dr. Thomas Varghese, Mr. C V Jacob and dignitaries
from the Vadavucode-Puthencruz Grama Panchayat.
The centre provides outpatient, inpatient and home care services. A
doctor trained in palliative care is present during day time and available on
calls. Nurses are positioned round-the-clock. All the services are free of
charge. Contact: Mr. Eliyas at 91 9400660072
Congratulations and best wishes to the team at Nirmala Palliative Care
UNIQUE INITIATIVE BY COPS – A PALLIATIVE CARE CENTRE
Palliative care centres are increasingly becoming a part of the
healthcare facilities as the cases of critical illnesses have spurted.
Institutions and healthcare entrepreneurs have come forward to open palliative
care centres at several places in Kerala so that specialised medical and
nursing care could be provided to gravely or terminally ill patients at an
Interestingly, the Kerala Armed Police (KAP) is also running such an
institution here at Mangattuparamba and it is a unique initiative by a security
Mythri Pain and Palliative Care Society of the KAP Battalion IV has now
attended to more than 1,300 terminally ill patients since its inception a
decade ago. It could be the only palliative care under any police force in the
PALLIATIVE CARE FOR THE ELDERLY SHOULD BE CONSIDERED A HUMAN RIGHTS ISSUE
There are a number of challenges faced by older persons in accessing
long term palliative care (LTPC) and end of life care. There are few support
services available for older persons in order to access quality and affordable
palliative care as part of available LTPC facilities. In addition there are few
mechanisms to redress concerns related to abuse and violation of rights of
All over the world, an important human rights agenda emerging is
strengthening the provision for affordable and quality LTPC with an emphasis on
home and community care, especially when life expectancies are increasing. This
is particularly pertinent for older age groups, especially the 70 plus and 80
plus older people, whose number is the fastest growing and who need more LTPC.
THE ROLE OF COUNSELLING IN PALLIATIVE CARE
Pranab Basu has been a hands on caregiver for his wife, and has now
devoted himself to helping and counselling people suffering from Cancer. He
talks about the importance of counselling in Palliative Care.
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UPCOMING EVENTS [HTTP://PALLIUMINDIA.ORG/COURSES/]
* NOV 5, 2018: 6 weeks certificate course in palliative medicine and
nursing (CCPPM, CCPN) at Trivandrum. Register: http://palliumindia.org/courses/
[http://palliumindia.org/courses/] Contact: education@xxxxxxxxxxxxxxxx
[mailto:education@xxxxxxxxxxxxxxxx] / 8589998760. Last date to apply: Oct 23
* DEC 7-8, 2018: 14th World Congress of Bioethics and 7th National
Bioethics Conference. Venue: St. John’s National Academy of Health Sciences,
Bengaluru, Karnataka 560034. Last date to submit abstracts: Sunday, April 8,
2018. Pre-conference workshop on December 3-4, 2018.
* FEB 8, 9, 10, 2019: The 26th International Conference of Indian
Association of Palliative Care – IAPCONKochi2019 – will be held on 8th, 9th and
10th February 2019 (with a Pre-Conference Workshop on 7th February 2019) at
AELI Hills, Ernakulam, Kerala, India. Conference website:
http://www.iapconkochi2019.com/ [http://www.iapconkochi2019.com/] Last date to
submit abstracts: Nov 30, 2018
* MAR 4, 2019: 6 weeks certificate course in palliative medicine and
nursing (CCPPM, CCPN) at Trivandrum. Register: http://palliumindia.org/courses/
[http://palliumindia.org/courses/] Contact: education@xxxxxxxxxxxxxxxx
[mailto:education@xxxxxxxxxxxxxxxx] / 8589998760. Last date to apply: Feb 18,
* APR 26-28, 2019: Three day volunteer training program in Trivandrum
including home visits. Contact: info@xxxxxxxxxxxxxxxx
* MAY 1, 2019: 10-day Foundation course in palliative medicine, at
Trivandrum. Register: https://palliumindia.org/courses/ Contact:
Have Queries? Contact: info@xxxxxxxxxxxxxxxx
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PALLIATIVE CARE INFORMATION CENTRE [HTTP://PALLIUMINDIA.ORG/INFO-CENTRE]
Contact Pallium India’s Information Centre (9 am to 12 noon) for
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For more details, please visit: http://palliumindia.org/info-centre/
ART – AS PAIN RELIEF [HTTPS://PALLIUMINDIA.ORG/2018/10/ART-AS-PAIN-RELIEF/]
Rahul, 16 years of age, has Juvenile arthritis. He has been receiving
palliative care for many years. He cannot walk due to deformities in his legs
and require support for his daily activities. He lives with his mother and his
younger brother, who also has Juvenile Arthritis. We at Pallium India have been
privileged to be their co-travellers.
Rahul often experiences severe pain and he finds great relief when
indulging in his favourite hobby – drawing. Even though he has deformities in
his fingers and cannot hold a pencil properly, he always wants to draw. He is
so good at it, despite his limitations. Its a joy to watch him intent at his
work, poring over his drawing, and his favourite theme is Lord Ganesha. See
some of Rahul’s drawings and you will know what we mean. Cheers to our young