August 2013 Newsletter

2013 August 31
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Amendment of Narcotics Act still pending

The lower house of Indian Parliament has still not taken up the proposed amendment of the Narcotic Drugs and Psychotropic Substances (NDPS) Act of India. We are hoping for the culmination of 18 years of efforts by the Palliative Care community of the country, generously empowered and supported by the Pain and Policy Studies Group fo Madison-Wisconsin, Lawyers’ Collective and many other friends and supporters.

The Parliament reconvenes on Tuesday, the 3rd of September 2013.

We had tea and talked about death

Death with Dignity 24 Aug 2013The 24th of August 2013 happens to be the 9th death anniversary of Dr Elisabeth Kubler Ross (EKR), guru to all palliative care workers and psychiatrists in the world. The EKR foundation is organizing dinners all over the world; the program is titled, “Let us have dinner and talk about death”.

On this day, Pallium India organized a public interaction forum at the historic Kanakakunnu (Golden hill) palace in Trivandrum, Kerala, talking about the current tendency towards over-medicalization of death, causing great physical, emotional and financial suffering. Social luminaries including Dr Babu Paul IAS, Mr Biju Prabhakar IAS, Writer and TV personality Mrs Usha S Nair, Journalist Sri M G Radhakrishnan, Film director Sri Rajiv Nath, Advocate Krishnappan Nair and Dr M.R.Rajagopal led the discussion.

The deliberations of this congress are meant to be followed up. We do intend to do something to prevent infliction of needless suffering, however well-intentioned.

VIP visits & 73 bright and eager faces

Xavier AtreyiPallium India had two distinguished visitors; Dr Xavier Gomez-Batiste, the director of the WHO Collaborating Centre at Barcelona, Spain and Dr Atreyi Ganguli from WHO (India).

After a tiring overnight train journey, they spent all their time over two days, working with us, evaluating programs, planning strategy and devising ways in which they could be helpful for palliative care in India.

They had a special treat at Trivandrum – a visit to the monthly review meeting of the palliative care program of National Rural Health Mission. 73 eager and bright faces- palliative care nurses working at each of the Panchayats (local self-government institutions) in the district. They were truly impressed with the achievement of the palliative care policy of the Government of Kerala.

Palliative Medico Training Program

Pallium India offers three days course at Trivandrum for budding doctors

To equip them to efficiently treat pain and suffering and thus discover  more pleasure in their everyday work, Pallium India now offers to medical students from Kerala University of Health Sciences, a three day course. It will be conducted soon after the declaration of the Final year examination, but before the beginning of the compulsory rotating internship.

For details, see http://palliumindia.org/courses/medicotraining/

There are only 30 seats on a first-come-first-served basis.

Wanted: Palliative Care Physician for Cankids

Ms. Poonam Bagai, founder president of Cankids writes:

Cankids is urgently looking for a Palliative Care Doctor for its Pediatric Palliative Care Center – Daycare and Transition Home-  in New Delhi, North India.

Cankids_Logo 1

The Cankids Pediatric Palliative Care project (PPCP) commenced in 2009 and grew to strength from September 2010,  initially focusing on finding gaps in the existing system in Government hospitals, and filling the same, providing quality palliative care services from moment of diagnosis onwards. In August 2012, we inaugurated the country’s first ever Pediatric Pallaitive care Center –as a Day Care and Transition Home.  The DTCH at Gautam Nagar, a short 10 min walk from AIIMS and Safdurjung Hospitals, has a 10 bedded in-patient facility, Counseling Room , Physiotherapy and Wellness Center, Training center and kitchen cafeteria.  The PPCP team includes the PPCP Doctor , 3 round the clock nurses, 2 nursing aides, a Senior Psychologist, physiotherapist, Center Supervisor and Parent Support & Patient Navigation Coordinator.

The project is exciting, exceptional and the first of its kind – with a complete and holistic focus integrating pain management, symptom control, counseling, wish granting, terminal care and bereavement support through the entire period of treatment for children with cancer and their families.

Free services are available to any family with a child faced with cancer, in any Cankids Unit hospitals, to begin with in Delhi NCR. It integrates with all the other Cankids support services and reflects Continuity of Care which is an integral part of our mission statement.

The work space is both in the cancer hospitals we work in as well as India’s first Pediatric Palliative Care Center as a Day Care and Transition Home.

The PPCP Doctor will:

1. Head the PPCP Daycare & transition Home, developing the services, managing the day to day operations, recruit and train the team.  He/She will be the operational and administrative head for the Center.  He/She will coordinate with other services of CK, particularly the medical Support program of which it is a part.

2. Develop Cankids Pediatric Palliative project- pan India, which includes

a. sensitizing, training and building capacity of CK team, parents and professionals  in pediatric palliative care,

b. reviewing services in centers where CK has CSUs,

c. developing the network and resource mapping

d.  building the palliative care services of CK

3. Undertake and guide research and projects in the field of Pediatric Palliative care

4. Collaborate with the Palliative care and oncology community to create awareness and advocate for pediatric palliative care in India and overseas.

The Palliative Care Physician could be someone who could either take it on as a 4 – 6 month project, including training a younger doctor OR a full time job with a 2 year time commitment. Hindi is not an imperative.  We can offer Rs 75000/ all inclusive, ( and for the 6 month project duration place to stay on the premises)

Qualifications : qualified palliative care doctor, with minimum 3 years experience in the field of palliative care. Preference if field of pediatric palliative care and oncology background.  Hindi is not an imperative.

Please contact Bornali Majumdar, HR Manager Cankids. She would be happy to follow up with mail or phone calls and answer any questions you may have. email id is hr@cankidsindia.org. Her phone number is +91 7838654770

Please feel free to contact me directly as well.

Many thanks for your help, and your ongoing support and help to Cankids.

Regards, Poonam Bagai’
Founder President Cankids …KidsCan
poonambagai@cankidsindia.org / +91 9811525745

Palliative Care Award 2014 for SAARC Countries Instituted by Cancer Aid Society

CANCER AID SOCIETY, an NGO having Special Consultative Status with United Nations ECOSOC, working across India since 1987 on Palliative Care, Advocacy, Tobacco Control, Cancer and Non Communicable Diseases Prevention and Control invites Application/ Nominations from Doctors, Paramedical Staff and Social Workers with demonstrative leadership in the field of Palliative Care for the Cancer Patients from India, Bangladesh, Bhutan, Nepal, Pakistan, Afghanistan and Sri Lanka.Application can be made by filling this form online along with the references and verifiable evidences through media and pictures in order to identify the leadership of the applicants/ nominees to be sent by email to palliativecare@canceraidsocietyindia.orgLast date of Application is 12.00 Hrs. (India Time) of 30th November 2013.

PALLIATIVE CARE AWARD – 2014 (Rs. 100000. and Plaque) will be presented at the 21st International Conference of the Indian Association of Palliative Care – February 2014 to be held at Bhubaneswar India.

If you have trouble viewing or submitting this form, you can fill it out online.

The girl with cancer and the butterfly

Dr Rajagopal, chairman of Pallium India writes:

Somnath & Malati 2I was spending a couple of days in the new palliative care training center at Saroj Gupta Cancer Center at Thakurpukur, Kolkata, with those undergoing a six weeks certificate course in Palliative Care. When I returned to the group after a lunch break, there was animated discussion around the white board. Malati, a young nurse, was trying to create Somnath’s (medical social worker) idea in a picture.  They were about to wipe it off hastily, when I stopped them and asked them what it was about.

The girl in the picture, they said, has cancer and is chasing a butterfly. So what are you going to do about it, I asked. Now there was a difference of opinion. Somnath, the owner of the idea, felt that it was important for a palliative care person to help chase that butterfly for the child.  He felt it was not important

Somnath & Malati pic

what the girl wished; whatever it is, it was important to fulfil the wish if possible.  The artist Malati, who translated Somnath’s idea to the board, now voiced a dissent. To her, the butterfly is a symbol. It depicts life, which the girl is seeking, possibly a futile pursuit.  We need to understand the girl’s emotions and be her companion in grief or pleasure, Malati thought.

Somnath and Malati, I agree with both of you so totally.  Whether the girl seeks a real butterfly in front of her, or whether she is seeking something that is flying away from her – like life itself – you both got the point that our role is to be fellow-travelers, holding her hand when we can, chasing the butterfly with her when she feels like it, but also allowing her to rest on your lap when she is tired.

Somnath, Malati and everyone else in the vibrant group including members of the organizations “South Kolkata Sanjeevani”, and “We with you”, I would consider myself lucky if I have one of you caring for me when my time comes.

The marriage – palliative care connection:

Everyone who is likely to read this would be aware of what palliative care is – the treatment of pain, breathlessness and other symptoms, the nursing care, the emotional, social and spiritual support and so on, going on to bereavement support. You can see a nurse, doctor, social worker or volunteer helping with any of these, but marriages?

Wedding Brides 25 Aug 2013Arranged marriages are still the order of the day in India. A girl’s marriage is the responsibility of the parent. Ask any terminally ill parent of an unmarried daughter, “What bothers you most?”, and they are unlikely to ask “Why me?”; instead they are likely to ask, “How will my daughter ever get married?”. Arranging marriages requires negotiations between families and it requires money.

Alpha Charitable Trust, a major provider of palliative care in Kerala has taken up this issue as part of their palliative care delivery.  The extended family will do the negotiations and find the bridegroom.  Alpha will find sponsors, get a certain amount of gold (mandatory for all weddings!) and some money for expenses, and also arrange the ceremony at no cost to the family. This year they got together six couples during a colorful wedding ceremony on 25 August 2013.

Congratulations Noordeen (founder) and team.  Pallium India is proud to be associated with you. Let us all join together to wish those six couples all the best for their life together.

Lesson 1: Help another child

clubfm“Lesson 1” is a program by “Club FM”, a popular radio station in Trivandrum. They have been requesting parents of school children to buy some extra materials when they buy books, school bags etc for their own kids and to donate them to help another child.
Today, we had the pleasant experience of receiving Mr. Vinod, (Manager- Radio Solutions) and Mr. Prasoon (Producer) from Club FM at Pallium India office. They came with a large bundle – notebooks, pens, pencils, pencil box, alphabet blocks, pencil sharpeners, erasers and so on for donation to Pallium India’s “Kuttikkoottam”- educational support program for children of families afflicted by prolonged life-limiting diseases.

Thank you Club FM.

PARTING SHOT

On the issue of amendment of the Narcotics Act of India, Dr Bhaumik Shah from Australia writes:

I am a practicing medical oncologist in Australia. I have trained in India upto my postgraduation. So I have worked in both the systems and can give a comparative narrative about opioid use.

I hardly used opioids in India and was honestly frightened to use it afraid of addiction potential. There were lots of oncology patients who would like to end their life and avoid pain rather than have life prolonging treatments.

I have worked in Australia where there is an accountable framework around prescribing opioids. The studies show that when appropriately used (especially in cancer patients) addiction potential is minimal.

It makes it possible to add quality to patients’ lives. It allows them to talk and walk more comfortably. They want to live more.

I strongly support this cause that can change lives of millions of people.

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