September 2015 Newsletter
The theme for this year’s World Palliative Care Day is ‘Hidden Lives / Hidden Patients.’
Most of the patients who are in need of palliative care in developing countries are ‘hidden’. Their plight is not seen by the authorities and they are sent home from hospital with the statement that “there is nothing more we can do.” They are forced to lead the rest of their lives in loneliness and suffering, abandoned by society, devastated financially and emotionally.
In much of the western world, paraplegics and quadriplegics are in the mainstream of society, but in India that is not the case. They are generally confined to the four walls of their homes. The palliative care stream in Kerala has, by and large, chosen to include paraplegics and quadriplegics under the purview of palliative care.
Pallium India wants to give them a day of pleasure by organizing a get-together for them with their families in Trivandrum on October 10, at Shanghumugham Beach. For each patient and family the expense estimated (for food and a gift) is Rs 900 (US $15).
Please donate whatever you can to make this event a happy one for our patients and their families.
For more details on how you can help, please write to us: email@example.com
Has the amendment of the opioid regulations by the Parliament in February 2014 made an impact on its availability?
Not yet, we fear.
But things are moving forward. In May 2015, the Government of India announced the state rules and on 31 July 2015, organized a workshop at Delhi for Drug Controllers of Individual States. (Thank you, Department of Revenue, for allowing Pallium India to be a part of it.)
At the workshop, several state drug controllers as well as non-government organizations raised several concerns. The Department of Revenue now has asked for input from all the states before the final order of implementation.
“There has been a lot of progress in palliative care in India, but the fact remains that despite the passing of almost a quarter of a century of palliative care activity in the country, even today palliative care reaches only about 1% of the people in India.”
In an article published in cancercontrol.info titled The current status of palliative care in India, Dr M. R. Rajagopal, Chairman of Pallium India, writes about the emergence of palliative care in the country – its origins, the barriers to opioid availability and how some of those barriers came to be simplified thanks to the continued efforts of many people from India and abroad, and the current status.
Read the complete article at: http://www.cancercontrol.info/wp-content/uploads/2015/07/57-62-MR-Rajagopal-.pdf
SAHAYATRA, Pallium India’s Malayalam print magazine, is meant for anyone interested in palliative care – patients and families, palliative care professionals, volunteers and well-wishers.
Click here to read the latest issue: http://palliumindia.org/sahayatra/
To subscribe to Sahayatra, please send your complete postal address to firstname.lastname@example.org
Pallium India, in collaboration with Canara Bank, organized an exhibition and sale of paintings and artwork by patients, volunteers and well-wishers of Pallium India from August 6th to 8th, 2015. The exhibition was inaugurated by the famous magician Gopinath Muthukad. Canara Bank Chief General Manager N. Sivasankaran, Justice M R Hariharan Nair and Dr C Mohanan were present, as also were Canara Bank employees, Pallium India’s volunteers and well-wishers. Pallium India’s CEO G. S. Manoj gave the welcome note and volunteer S. Lalitha proposed a vote of thanks.
“We were greeted by the smiling, bright faces of five-year- old Arif and eight-year-old Altaf, brothers who have cerebral palsy, a neuromotor condition that presents at childhood. Arif immediately reached out, grabbed my hand and proceeded to teach me to draw. Soon, we were tying glitter bands on each others’ wrists, before moving rapidly from one activity to the next, based on Arif’s breathless whims.”
We are happily accepting toy donations for our weekly children’s palliative care clinic. Certain specifications need to be considered before sending the toys across, due to the nature of the children’s illnesses.
Kindly avoid toys with small breakable parts, anything with batteries, toys with sharp edges, regular sized Lego pieces, jigsaw puzzles with small pieces, games involving liquids (like the ones that shoot rings onto sticks at the press of a button), stuffed toys that have fine hair and fluff, etc.
If you are interested in sending something across, do call us (+91-9746745497) or write to us: email@example.com. Thank you very much!
On July 27, 2015, we had reported to you about an army of compassion – a group of 22 middle level palliative care professionals who got together with a view to join the action for taking palliative care forward in India.
We are glad to report this progress from the state of Andhra Pradesh, where at the third anniversary of Sneha Sandhya Age Care Foundation, two members of the army, Dr N S Raju and Dr Vidya Viswanath, joined many important people like Mr Pravin Kumar (Commissioner of Greater Vishakhapatnam Municipal Corporation), Sudhakar Babu (Regional Director of Health), V Umamaheswara Rao (Registrar of Andhra University), Mr Satyanarayana Prasad (Deputy General Manager of State Bank of Hyderabad) and others, in asking for the development of a palliative care policy for the state.
Considering that Andhra Pradesh has a population of around 50 million, it is easy to understand what a big step this could turn out to be.
In another step forward, the Journal of Pain and Palliative Care Pharmacotherapy now has a page on the website where all the narratives published so far can be accessed.
If you are in any way connected with palliative care, you must be having a story in you, that touched your heart. Do please put it in writing and send it to us: firstname.lastname@example.org. You get an indexed publication to your credit. And also the satisfaction of having helped the cause. Read more here.
Here are some of the narratives that have been published:
Through the Eyes of Child: Mary Macey’s reflection on her childhood and adolescence, after losing her mother and how palliative care brought her experience into focus.
When Two Worlds Meet: Lyndsey Brahm writes about the cultural immersion that she experienced when she visited the east from the west.
They Suffer in Silence: Savita Butola writes about the intensity of grief, related to life-limiting disease in the developing world.
Pain – When It Affects the Person: the impact of pain on the body and mind, written by Edassery Divakaran
The Indo American Cancer Association and John and Editha Kapoor Charitable Foundation, in association with Trivandrum Institute of Palliative Sciences, are offering scholarships to practising doctors and nurses, who are interested in learning fundamentals of Palliative Care.
The scholarships are offered to 12 most deserving candidates every year, for the following courses:
- 6 weeks Certiﬁcate Course in Palliative Medicine
- 6 weeks Certiﬁcate Course in Palliative Nursing
The details of the training centres where these courses are offered are given below. Please contact the respective training-in-charge for application details.
- Trivandrum Institute of Palliative Sciences, Trivandrum
Dr. Sreedevi Warrier: email@example.com
- MNJ IO and Regional Cancer Centre, Hyderabad
Dr Gayatri Palat; Ms Vineela: firstname.lastname@example.org
- Bhagwan Mahaveer Cancer Hospital and Research Centre, Jaipur
Dr Anjum Joad; Dr Shikha Jain: email@example.com
- The Gujarat Cancer & Research Institute, Ahmedabad
Dr Geeta Joshi: firstname.lastname@example.org
- Tata Memorial Centre, Mumbai
Dr Mary Ann Muckaden: email@example.com
- SGCCRI, Kolkata
Dr Rakesh Roy: Rex4you@gmail.com
TIPS, Trivandrum, Kerala
- Six Week Certificate Course in Pain and Palliative Medicine (CCPPM) – 7 Sep 2015, 2 Nov 2015, 7 Mar 2016, 2 May 2016
- Six Week Certificate Course in Palliative Nursing (CCPN) – 7 Sep 2015, 2 Nov 2015, 7 Mar 2016, 2 May 2016.
- 10-day Foundation Course in Palliative Medicine – 7 Sep 2015, 2 Nov 2015, 7 Mar 2016, 2 May 2016
- 2-day Volunteers Training Program is conducted every month at Trivandrum Institute of Palliative Sciences, Arumana Hospital, Trivandrum. Anyone interested in learning about palliative care can attend.
- Contact: firstname.lastname@example.org, +91 471-2468991, 9746745497.
GCRI, Ahmedabad, Gujarat
- Six Weeks Certificate Course in Pain and Palliative Medicine (CCPPM)
- Six Weeks Certificate Course in Palliative Nursing (CCPN)
- Contact: email@example.com
MNJIO & RCC, Hyderabad, Telengana
- One Month Certificate Course in Pain and Palliative Medicine (CCPPM) for Doctors, Nurses, Social Workers and Volunteers
- Contact: firstname.lastname@example.org, +91 91772 38901
BMCHRC, Jaipur, Rajasthan
- 6 weeks’ Certificate Course in Pain and Palliative Care for Doctors and Nurses
- Contact: Dr Anjum Khan Joad. email@example.com.
For more details on the courses we offer, please visit: http://palliumindia.org/courses/
Concerned over the welfare of people with dengue fever, the Delhi government has banned over-the-counter sale of NSAIDs without prescription.
The impact is questionable, because all over the country, prescription drugs are sold over-the-counter without prescription, though the regulations may not permit it. Feeble attempts in the past at curbing this practice have failed to make an impact. The ethical right and wrong of it, perhaps, is difficult to decide because such a vast number of Indians do not have access to doctors anyway.
Is your city one for its citizens or is it only meant for its completely able-bodied people?
On 22 July 2015, five people on wheelchair – one person with quadriplegia and four with paraplegia – got together with government officials, doctors and social activists to discuss how Trivandrum city in Kerala can be made wheelchair friendly.
These are the action points that emerged from these discussions.
1. Improve public awareness. NGOs can play a crucial part in organizing awareness programs.
2. Conduct awareness programs for builders regarding the needs of wheelchair bound individuals.
3. Fast-track courts should be involved in quicker processing of pension schemes and insurance / accident claims.
4. Submit proposal to the government to create a special wing for handling disability pension schemes for patients and caregivers.
5. Create a group / forum (involving social media) for “wheelchair-friendly” discussions and activities.
6. Submit a proposal for considering special reservation for jobs for differently abled and wheelchair-bound people.
Pallium India seeks clinically experienced international physicians who are able to practice and teach in a variety of settings, include home visits, outpatient visits, and the inpatient unit. They must be adaptable to new environments and be able to commit to over 3 months. Pallium India will provide translators as most patients will prefer to speak Malayalam. Teaching will be done in English.
If you are interested, please write to us: firstname.lastname@example.org
Contact Pallium India’s Information Centre (9 am to 12 noon) for information related to palliative care and about establishments where such facilities are available in India.
Telephone: +91-9746745497 or E-mail: email@example.com
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
News from around the world
- Innovative model for palliative care emerging in rural North India
- Plea for Palliative Care Policy in Andhra Pradesh
- Palliative Care: You are the Bridge
- The Observer view on a dignified end to life
- 10 things I learnt from cancer
- How does your brain respond to pain?
- End of life care means meeting the emotional needs of patients and families
- Doctors Fail to Address Patients’ Spiritual Needs
- I will not let a computer come between me and my patient
- Whose End of Life Is It, Anyway?
- Hope Floats
- Cancer a major health risk in South Asia
- A Human Rights Treaty Finally Recognizes the Right to Palliative Care
While discussing our activities, a friend of Pallium India, prefacing his question with a usual ‘great work you are doing’, asked,
“All that must be expensive. Where does the money come from?”
Well, here is where the money comes from:
- A widowed pensioner living alone in Trivandrum, quietly drops in at our office on her way back from the treasury (from where she collects her pension every month) leaves a certain amount with us, patiently waits for a receipt, collects it and goes.
- A not-very-well-paid public servant writes to us, “I am not a rich person. I am sorry that this amount is so small. This is for my Dad’s death anniversary in grateful memory of what you did for him. I hope to do this every year.” The amount was, by no means, small for us.
- Professor Jo Eland of Iowa University gets the Humanitarian award from American Society For Pain Management Nursing (ASPMN). The money comes to Pallium India.
- A mother living in Dubai about to celebrate her child’s first birthday, pauses for a minute to think about children whose lives are grey. She sends enough to have a celebration for children who have birthdays that month.
- The members of CurleyStreet Media come to Trivandrum for a shooting schedule. When they leave, they send a substantial cheque to support our work.
- The foundation manager of an international philanthropic organization finds that the proposal that we submitted was not quite up to the standard and patiently spends time with our team to teach us how to do it better.
This is only a part of the story. We are able to go on, thanks to those kind-hearted souls who think of the others who need their help. Thank you, everyone, for supporting us.
posted by palliumindia in Newsletter