November 2018 Newsletter
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.
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 Ranni Panchayat.
- Provided adequate support in patient care including bed bath and wound dressing.
- Provided essential medicine support (including preventive medicines such as doxycycline, ORS etc) to the patients who are facing different health issues.
- Support given to a family to shift them from Pathanamthitta to Trivandrum. Made all the possible arrangements for their child’s education in Trivandrum.
- 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 districts)
- 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.
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: https://telanganatoday.com/ts-set-to-extend-palliative-care-to-all-districts
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, 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/
Follow IAPCONKochi2019 on Facebook: https://www.facebook.com/iapconkochi2019/
Integrating palliative care and symptom relief into primary health care: a WHO guide for planners, implementers and managers 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 important document.
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 care services.”
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 support?
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 matters!
On October 14, TIPC, CET Cycling Club, Indus Cycle Embassy and Pallium India organised a palliative care awareness ride from Gandhi Park to Manaveeyam Veedhi, Trivandrum.
On the occasion of World Hospice and Palliative Care Day, Pallium India and Cankids… Kidscan honored Dr Ambika Rajvanshi and Dr Reena Sharma for the outstanding work being done by CanSupport – Caring for People with Cancer.
The event held at Select CityWalk, New Delhi, also screened Hippocratic, the documentary film produced by Moonshine Agency.
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, 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 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 institutional set-up.
Interestingly, the Kerala Armed Police (KAP) is also running such an institution here at Mangattuparamba and it is a unique initiative by a security force.
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 world.
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 older people.
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.
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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- Nov 5, 2018: 6 weeks certificate course in palliative medicine and nursing (CCPPM, CCPN) at Trivandrum. Register: http://palliumindia.org/courses/ Contact: firstname.lastname@example.org / 8589998760. Last date to apply: Oct 23
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- 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/ 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/ Contact: email@example.com / 8589998760. Last date to apply: Feb 18, 2019
- Apr 26-28, 2019: Three day volunteer training program in Trivandrum including home visits. Contact: firstname.lastname@example.org
- May 1, 2019: 10-day Foundation course in palliative medicine, at Trivandrum. Register: https://palliumindia.org/courses/ Contact: email@example.com
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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 champion!
posted by palliumindia in Newsletter