December 2019 Newsletter
Ashla Rani, Executive Assistant to Chairman of Pallium India, writes:
We live in a country where being a woman itself is a big challenge. Disability makes it even more difficult. As a woman and a person with disability, there are laws to protect us in this country. However, they are not freely available when needed. We have to demand our rights in many occasions. Without knowing what we are entitled to, how will we demand it?
In this context, a workshop was organized by Pallium India on 23rd November to discuss the rights of women and the rights of people with disabilities. The venue was the Govt. College for Women, Thiruvananthapuram. The program was supported by the Women’s Institute on Leadership and Disability (WILD) program of Mobility International USA (MIUSA), Praptha (internal committee for differently abled students at Govt. College for Women) and Channel Foundation. 20 women with different kinds of disabilities attended the workshop.
People do not see a person with disability as a sexual being. With many barriers to information, we do not have opportunities to discuss sexuality and reproductive health.
“It is necessary to provide women with disabilities a space of their own by empowering them and bringing them to the mainstream, and by creating access to equal opportunities and civil rights,” writes Miby Miriam Jacob, an intern at National Institute of Speech and Hearing (NISH) and a hearing impaired person, who attended the workshop. Read her complete blog, ‘We have to come forward and fight for our rights’
Palliative Care Programs launched in Odisha, Telengana and Tamil Nadu
We are glad to announce that progress has been made in three states with regard to palliative care.
Palliative care in Odisha was started in the 1990s by Dr Sukdev Nayak and team, at the Regional Cancer Centre, Cuttack. On 7th November 2019, the Chief Minister of Odisha, Shri Naveen Patnaik announced a palliative care program to be started at the district level. Read more: District level palliative care program launched in Odisha
It took the palliative care activists of Telengana about 13 years of hard work to get to where they are. All the activism has paid off now. Telengana government now has initiated a state-wide palliative care activity. Read more: Telangana government promises dignity to the dying
Meanwhile Tamil Nadu has declared the state policy for palliative care, a copy of which can be found here: Tamil Nadu Palliative Care Policy
Pallium India was truly privileged to be part of an event in Kuala Lumpur on 6 November 2019 at which Malaysia’s health minister Datuk Seri Dzulkefly Bin Ahmed (in the picture) released the National palliative care policy of Malaysia. He did not just make a speech and vanish as one would expect a busy minister to do; he was so interested that he stayed on for more than two hours, listening to the proceedings, talking to all concerned and making plans for implementation.
Congratulations Dr Richard Lim, for your pioneering efforts.
Rontu Sangma, Pallium India’s Prog. Coordinator for North-East India, writes:
I had the wonderful opportunity and honour of meeting Gilly Burn, a dear friend of palliative care in India, and to accompany her on her official visit to Shillong, Nagaland, Silchar and Guwahati.
In recent years, Guwahati has become a new destination for health services. Northeast India is well blessed by Nature. Besides having spectacular biodiversity, wildlife, the snow-capped Himalayas, tropical forest, shrines of diverse religions, and prominent archaeological sites, the Northeast provides an immense opportunity for medical tourism. So, medical treatment in the Northeast means adding new life to health.
We first visited Shillong (Meghalaya) where Gilly Burn was the Guest of Honour at the North East Zone Critical Care Conference (NEZCCON) 2019 held at NEIGRIHMS (North Eastern Indira Gandhi Regional Institute of Health and Medical Sciences), from 8-10 November 2019.
From there, we headed to Nagaland where Gilly was a special guest at several events including the CME & Workshop in Dimapur at CIHSR (Christian Institute of Health Sciences and Research). She was glad to meet the officials of Shalom Rehabilitation Centre, who are planning to building a palliative care centre in Dimapur. Her visit and valuable advice have helped them immensely.
At a time when noncommunicable diseases, often chronic in nature, are increasing and India’s population is ageing, there is an increased need for palliative care – but the field is often neglected in the country. Health Issues India spoke to Dr M. R. Ragagopal, founder and chairman of Pallium India, about the challenges facing access to palliative care and why it is so important.
37 year old Ashla Rani met with an accident almost eight years back which affected her spinal cord. She has been a wheelchair user since then. In spite of the many obstacles, Ashla rose like a phoenix to work for the many others like her who have disabilities. Today, she is an integral part of Trivandrum based Pallium India where she empowers people with disabilities through many programmes. Read the article in News Hook
Job Title: Palliative Care Physician
No. of vacancies: 2, Location: Trivandrum
Nature of Job: Permanent – Full Time. Experience: Fresher /1-2 years
Essential Qualification: M.B.B.S from a recognized university. Desired Qualification: Trained in Palliative Care
Interested candidates please send detailed and updated CV to email@example.com with subject as “Application for Palliative Care Physician”.
Snehaanchal Hospice and Palliative Care Centre, Nagpur, invites applications to the post of Palliative Care Physician (full time).
Eligibility: M.B.B.S, with formal training or qualification in Palliative Medicine
Experience: 3 to 5 years in a palliative set-up is necessary
Application, together with a self-drafted CV or Resume, can be emailed to firstname.lastname@example.org marking the Subject with words “PHYSICIAN PALL CARE”. Applicant must clearly spell out his/her financial and non-financial expectations, if any.
Swarga Foundation presents the fifth edition of their calendar, I’m Special 2020 with the theme “Love & Beyond” that features special couples who challenge the societal norms and are harbingers of change.
Watch the video about the calendar: https://www.youtube.com/watch?v=Ikw76Stgihc
There are two variants of the calendar, a desktop version of 10″ ht. priced at Rs.325/- and a wall hanging one of 18″ ht. priced at 350/- per piece. The proceeds from the sales of these calendars will go towards setting up a Neuro Rehabilitation Centre at Coimbatore or patients with neuro-muscular disorders.
Purchase these calendars and support Swarga Foundation in bringing hope and smiles in the lives of many.
Contact Swarga Foundation at:
Kudumbasree, a poverty-eradication and women-empowerment programme of Government of Kerala, and Kerala Institute of Local Administration (KILA) together organized a discussion on elder care, involving the civil society, on 19 and 20 November 2019. Pallium India was invited to be a part of this discussion.
We talked again of integrating elder care programs (both on government and non-government sectors) with the palliative care stream which now reaches out to most remote parts of Kerala. This has been discussed countless times. However, let us hope this time we are able to translate the thoughts to action.
Smriti Rana, Pallium India’s Program Director, writes:
To me, this is an example of providing equity through good governance.
Anyone who has faced a life-limiting illness and its ensuing treatment, understands how financially devastating it can be. This one seemingly simple gesture by the Kerala government is not only wise, but deeply kind. It allows a person to be cared for at home, and not force them into a hospital or a critical care unit and further destroy them. It allows for a patient to be where they belong. And demonstrates a singularly important tenet of universal health coverage – giving them access to health care when they need it, where they need it.
While the document only mentions an oxygen concentrator, we have encountered people who have been able to avail of this provision because they had an air bed that had to keep running 24/7 on electricity for a bed-bound loved one.
Whatever anyone’s political views or opinions, and also taking into account that there may be a few procedural matters to navigate in order to avail this, the fact that this provision exists at all has earned the Kerala government my full respect.
Dr. Saima Furqan, Regional Programme Officer for Pallium India, writes:
As part of a learning exchange program initiated by the three amazing palliative care nurses Sandra Hawkins, Toni Coleman and Sarah Beghley, I got an opportunity to visit Australia for 2 weeks. The trip gave me a glimpse into how palliative care works in Australia. Sandra, Toni and Sarah are members of Project Hamrahi, which is a collaboration between Pallium India and Australasian Palliative Link International (APLI).
They are community palliative care nurses at Wagga Wagga, a small, beautiful town in New South Wales. Interestingly, there is no Palliative Care Physician in Wagga and the palliative care program is entirely run by nurses. This made me realize the crucial role nurses play in providing the best palliative care service to the community.
During my stay, I met wonderful palliative care professionals including a nurse practitioner, Jenny Mckenzie, who is authorized to prescribe morphine, a very senior Palliative Care Physician Dr. Kennedy from Sydney who visits The Calvary Hospital in Wagga once a week, Dr. Brian, another Palliative Care Physician at the Royal Melbourne Hospital, and several others.
I also visited a beautiful hospice as well as aged care center in Wagga Wagga and interacted with some of the patients at home. This was another eye-opener for me which gave me the opportunity to learn and understand the care of patients suffering from cancer and non-cancer diseases such as MND, CKD etc through Palliative Care.
Sandra and Toni were kind enough to arrange my talk at two of the best rotary clubs in Wagga Wagga. These two rotary clubs (Kooringal and Wollundry) are perfect examples of how a responsible community could help in improving the quality of life of the society. I spoke about Pallium India’s work in India and the need for palliative care which immediately motivated them to offer their support to Pallium India in whichever way possible.
Moving forward, I hope to utilize the support and learnings to improve palliative care services in India.
A few days ago, we posted a request on social media about the requirement for a BiPAP machine – Bilevel Positive Airway Pressure machine, which one of our patients needed, to breathe. It is expensive; and not many can afford it. We asked if anyone could donate one.
Mr Shyam Gurung in Pune reads it, contacts us and sends across a sparingly used machine that his mother in law once needed.
Very glad to report that the machine is now being used at home by the patient. Thank you very much, Mr Shyam Gurung!
How many people have old assistive devices of various kinds lying unused at home, gathering rust and dust? If only they could be connected with a local palliative care or rehabilitation unit, such huge transformation could be made to many lives.
Anurag Behar, in his article We shouldn’t expect philanthropists to fund activism, asks us not to depend on business houses if we want our non-government organisations truly independent. The wealthy in India do not give anywhere near what they could, he argues.
In that context, we are particularly grateful to our donors who have kept us going. True, paucity of funds has prevented us from growing the way our country’s needs demand; but at least we have managed not only to stay afloat, but also to grow at a certain modest rate.
Thank you everyone who support us with your time, money or good will.
Rajalekshmi Balu, Project Coordinator, writes:
A few weeks ago, at the Snehasparsham get-together for children organized by Pallium India, we had requested members of Project Management Institute (PMI) Kerala Chapter, to help our alumni students (children who had received Pallium India’s education support until they completed school) find jobs they would enjoy doing; specifically to make these young men and women more competitive and employable, and to help them discover more opportunities in their relevant fields.
PMI is the world’s leading not-for-profit professional membership association for the project, program and portfolio management profession. They have presence in 208 countries and territories around the world, with local chapters that are into various educational support programs apart from their project management networking.
Accordingly, on 26th October 2019, PMI Kerala conducted a 1-day workshop comprising resume writing, job hunting and tips on how to approach a job interview. The workshop was held at B-Hub, Nalanchira, the official location of PMI Kerala Chapter.
5 of our alumni attended the program; also present were PMI members and Pallium India staff.
Video of the Month: An Introduction to Palliative Care
Dr M. R. Rajagopal introduces Palliative Care to medical students.
Watch the video: An Introduction to Palliative Care
For more videos, please subscribe to Pallium India’s youtube channel: https://www.youtube.com/channel/UCTNWffD5VtKBstQ1jCN8aBQ
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- Dec 27-29, 2019: Volunteer Training Program at Trivandrum. Contact: firstname.lastname@example.org
- Jan 1, 2020: Clinical Fellowship in Pediatric Palliative Medicine at MNJ Institute of Oncology, Hyderabad. Contact: email@example.com
- Mar 2, 2020: Certificate Course in Pain and Palliative Medicine (for doctors) and Certificate Course in Palliative Nursing (for nurses) at Trivandrum. CCPPM: https://palliumindia.org/courses/ccppm/ CCPN: https://palliumindia.org/courses/ccpn/ Contact: +91 8589998760 / firstname.lastname@example.org
- Mar 2, 2020: Advanced Certificate Course in Pediatric Palliative Care at MNJ Institute of Oncology, Hyderabad. Contact: email@example.com
- May 4, 2020: 10 day Foundation course for doctors (FCPPM) at Trivandrum. Contact: +91 8589998760 / firstname.lastname@example.org
- Jun 1, 2020: Certificate Course in Pain and Palliative Medicine (for doctors) and Certificate Course in Palliative Nursing (for nurses) at Trivandrum. CCPPM: https://palliumindia.org/courses/ccppm/ CCPN: https://palliumindia.org/courses/ccpn/ Contact: +91 8589998760 / email@example.com
- Jul 1, 2020: Clinical Fellowship in Pediatric Palliative Medicine at MNJ Institute of Oncology, Hyderabad. Contact: firstname.lastname@example.org
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Contact Pallium India’s Information Centre (9 am to 5 p.m., except on Sundays and National holidays) for information related to palliative care and about establishments where such facilities are available in India.
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Address: Pallium India Trust, VP 80/13, Golden Hills, Venkode P.O., Vattappara, Thiruvananthapuram 695028
For more details, please visit: http://palliumindia.org/info-centre/
Fate had never been kind to Jyothi Kumar. An accident in his youth paralysed him below the waist. He went through abandonment and almost all the worst experiences that life can offer anyone. But he had always overcome. An author, poet, artist, innovator; his achievements had been many. But when fate dealt him another cruel blow and he lost most of his vision just over a matter of a week, he was in despair. He has limited vision now.
“Limited vision does not matter,” he said. “How do I get out of this sense of hopelessness?”
One of our young doctors showed us all how. She asked Jyothi, “Uncle, can you draw me a painting of what life looks to you now?”
That was enough. Was it the feeling that someone cared? Or was it the realisation that he could still do something for someone else?
Jyothi came to life and created this wonderful painting that he has titled “Insight”. And came back to being almost what he was – a source of inspiration to many.
posted by pallium india in Newsletter