May-June 2010 Newsletter
Stepping Out…Beyond The Window…
Eleven families got together at TIPS (Trivandrum Institute of Palliative Sciences) on May 16th, 2010.
Families of 11 special people who are all paraplegic. Most have been confined to their beds till Pallium India reached them.
The palliative care organizations in their own areas (we call them our Iink centers) arranged for their transport.
The major objectives for arranging such a meet were:
- To get them out of their four walls. This trip symbolised a major step forward in their struggle for independence.
- To build a forum for them so that they form their own support system.
- To explore greater opportunities for vocational rehabilitation for thousands like them
- To have some fun (The day ended with an hour of spell-binding magic presented by Magic Academy, Kochi.)
They had inspiring stories to share …stories of real life…of courage, acceptance, perseverance and optimism against backdrops of tragedy, rejection, despair, apathy and insensitivity of the society they live in, brightened at times by little rays of light and hope…the essential humanity of man.
Four years ago, as he was preparing himself for his law studies, 20 year old Gokul was involved in a car crash which left him a paraplegic. After agonising years of trying to put his shattered life together, he went back to his Law Academy, this time, on a wheel chair. There were many steps to negotiate to get to the classroom. He met the head of the institution. Could they construct a ramp so that he and another student similarly disabled could get to their classes? Not only was the request turned down, it was also insinuated that his presence in the institution was emotionally distressing for his fellow students.
Many such stories of official insensitivity and social neglect and apathy came to light …but, there were also glimpses of beacons of light and hope. A young man whose own family rejected him was cared for as their own by his wife’s parents and siblings. Another had surrendered himself entirely to God Almighty and thanked Him for preserving his life. And there was Vijayaraj, who writes poetry holding a pen between his palms, because he had lost the use of his fingers. He sang an invocation that he himself had written and composed.
What was strangely fascinating about these special people was that almost all of them had such happy faces. And the show-stopper was Preetha who could never stop giggling even as she described the arduous journey uphill for about 200 meters the team which carried her and her wheel-chair had to undertake, to reach a path from where she could use her wheel chair.
She had got through to the Chief Minister at one of his phone-in programs on television and asked for a path from her house to the road on which she could travel by wheel chair. She was instructed to file an application with the local administration. However, the office wanted her to appear in person; it was not their concern that she could not walk. But Preetha was not disheartened. She heard about palliative care on the radio and eventually found the palliative care volunteer Lijo. Palliative care relieved her of her central pain. Lijo provided her with raw materials with which she could make dolls, plastic flowers and bead necklaces with her hands. She proudly displayed her wares at the meet and everything was sold out. She went back with a large order for more.
The group decided to have an organization of their own and left with an action plan for the future.
Congratulations Mr Sunaj, Dr Baburaj, and Dr Shibu and the rest of the team for initiating the program and for carrying it through so successfully. And our special thanks to our long time friend and well wisher Mr Bruce Davis from UK, who is supporting us in numerous ways with his encouragement and funding the physiotherapy project.
Sometimes, all it needs is a helping hand to raise someone and help him walk back to the road of life.
Alarm Bells About Chemicals and Cancer
The US President’s cancer panel is reported to have made the following recommendations, according to a report in the New York Times
- Particularly when pregnant and when children are small, choose foods, toys and garden products with fewer endocrine disruptors or other toxins. (Information about products is at cosmeticsdatabase.com or healthystuff.org)
- For those whose jobs may expose them to chemicals, remove shoes when entering the house and wash work clothes separately from the rest of the laundry.
- Filter drinking water.
- Store water in glass or stainless steel containers, or in plastics that don’t contain BPA or phthalates (chemicals used to soften plastics). Microwave food in ceramic or glass containers.
- Give preference to food grown without pesticides, chemical fertilizers and growth hormones. Avoid meats that are cooked well-done.
- Check radon levels in your home. Radon is a natural source of radiation linked to cancer.
A Deadly White Dust
Melody Kemp from the Society for Environmental Journalism writes about how Western countries banned asbestos and how then the industry shifted its focus to developing countries.
In 2006, she says, India imported 360,000 tonnes of asbestos. And in 2008, India – along with Pakistan, Canada and Russia – rejected the banning of chrysotile asbestos mandated under the Rotterdam Convention on Prior Informed Consent.
Asbestos-related diseases cause a very painful and slow death. She points out how vast the suffering is and how even palliative care is not available to the sufferers. She writes:
The pain of mesothelioma and other asbestos-related diseases can be agonising and requires another white powder – morphine – to provide relief. Ironically many of the countries where asbestos disease is rife, such as India, have a shortfall in the supply of legally scheduled opiates. There is no shortfall in asbestos.
Read the full report: http://www.chinadialogue.net/article/show/single/en/3600
Part one of the report here: http://www.chinadialogue.net/article/show/single/en/3597-A-deadly-white-dust-1-
Indian Express: Weekend Visits
The Indian Express has come out with a news item about some palliative care activity in New Delhi.
The North of India has so little palliative care and any new activity is such good news!
Every weekend, volunteers of DNipCare, a palliative care group, visit people in pain. They don’t claim a cure, only a little comfort.
What are you doing this Sunday? Would you like to drive up to a hospice, next door to Safdarjung Hospital, and meet Rajesh Bhakt, a 19-year-old terminally ill cancer patient?
Free Resource: PalliativeDrugs.com
With the cost of textbooks and journals remaining what it is, this is a precious site that provides essential independent information for health professionals worldwide about drugs used in palliative and hospice care.
The content is based on the UK Palliative Care Formulary (PCF, 3rd edition) which was Highly Commended in the British Medical Association 2008 book competition. It includes details about unlicensed (unlabeled) indications and routes, and the administration of multiple drugs by continuous subcutaneous infusion.
To access the site, it is necessary to register:
- Click on ‘To register for access..’ to create your own username and password.
- They will ask you to provide contact and other details, including your registration number with a professional body like the Medical, Nursing or Pharmacy Council of India.
PalliativeDrugs.com is a free-access resource. You can help them to remain that way by buying books published by PalliativeDrugs.com from their bookshop, e.g. Palliative Care Formulary, Hospice and Palliative Care Formulary USA, Symptom Management in Advanced Cancer, and by completing market research surveys when invited to do so from time to time.
Once registered, they recommend that you first read “Getting the most out of the PCF3“.
Hamrahi – APLI & Pallium India Joint Project
Hamrahi means fellow-traveler. Well, that is exactly what a group of Australian doctors plan to do – travel with us on the difficult journey that many of our patients have to go through.
Project Hamrahi is a collaborative venture between Pallium India and Australia Palliative Link International (APLI). (Thank you Dr Nirmala, for finding such an appropriate name for the project!)
Dr Odette Spruyt (a friend of Indian Palliative Care) from Peter MacCallum Cancer Center in Melbourne had given a talk based on her Indian experience, and several Australian doctors came forward to help. Discussions between Dr Odette Spruyt and Pallium India gave clarity to the idea.
Project Hamrahi is designed to fill a certain need. As it stands now, doctors and nurses get trained in palliative care for six weeks. Once they go back to their home towns, they are on their own to fight a thousand barriers, with negligible support.
Project Hamrahi envisages continued mentoring by one expert – hopefully matching one expert with one palliative care program on a long term basis.
In preparation for the project, a preliminary workshop has already been held in Melbourne.
Lisa Pain & Palliative Care Society’s 10th Anniversary
On 01 May 2000, Mr David Joranson, director of the WHO Collaborating Center at Madison-Wisconsin, formally inaugurated the Lisa Pain and Palliative Care Society at Tiruvambady, a small town in the outskirts of Calicut. Housed in a private hospital as its charitable arm, it was founded by the owner of the hospital, Dr P.M.Mathai.
In 2003, they started home visits and a few years back, an inpatient wing for palliative care was added. The work involves both the hospital and the community and out of about 100 volunteers, about 20 attend to the work on a regular basis.
The institution celebrated its 10th anniversary on 01 May 2010. The festivities started with a rally by school students, scouts & guides and volunteers followed by a public meeting. The most noticeable feature was the joy and enthusiasm of the team of volunteers. Their sense of achievement and fulfillment were obvious.
Best wishes Lisa PPCS!
Institutions like yours have a special place in development of palliative care in the country – that of integrating hospital based practice with community based work.
Indian Palliative Care Featured in APLI Newsletter
… see palliative care practised at the highest level with limited resources was inspirational.
The April issue of Australia Palliative Link International newsletter features mostly India.
Several authors write about their experiences in Trivandrum, Trichy and Delhi. In the issue:
- Developing collaborations with Pallium India and APLI – Dr Odette Spruyt
- Palliative Study Tour – Dr Anil Tandon
- Reflections on Trichy Palcon 2010 – Dr Sok Hui GOH
- Impressions of TIPS at Trivandrum – Dr Judith McEniery
- A student visit to TIPS – Teresa McEniery
- Mapping the CanSupport Journey – Harmala Gupta
- Palliative Care Snapshot – Dr Naveen Salin
If you are an Indian, it helps to see how others view this country.
If you are not, well, this may prepare you to understand our problems on the palliative care front a bit better.
Six Week Certificate Course at TIPS
Those who wish to apply for the course starting on the first Monday of July (5 July) or subsequent alternate months, please apply using the application forms here: palliumindia.org/courses
International Palliative Care Network Poster Exhibition 2010
Palliative Care Network Community (PCNC) will host the International Palliaitve Care Network Poster Exhibition-2010.
The top three posters will receive: 1st Prize : US $ 500 / 2nd Prize: US $ 300 / 3rd Prize : US $ 200
The lead authors of all accepted posters will receive an e-certificate. Lead authors of all outstanding posters wil receive an e-certificate with an honorable mention.
Participation is open to all palliative care professionals from across the globe.
Deadline for poster submission: 11:59 Eastern Time (USA), August 31,2010.
We look forward to your participation in yet another unique and innovative endeavor – click here for details…
Teresa McEniery, an Australian teenager, came to visit us. On her return, she wrote about her experiences in the APLI (Australia Palliative Link International) newsletter.
She says she came:
as an unconvinced and unmotivated prospective medical student, with the hope of gaining deeper insight into the reality of medical practice
She was touched by how
the palliative home visit team often sat with the patient and their family, talked with them, ate with them, and on occasion, cried with them
To see medicine practiced in such a different context, entirely stripped of the business-like character that is at risk of developing, and simply a case of human beings doing all that they can to help other human beings, was inspiring
If this is what medicine can be, then this is the work that I want to do.
Dear Teresa, thank you for your kind words about our team, but you also make a very important point about medical education. Seeing is believing. Medical students anywhere must be given an opportunity to see palliative care being practiced. Seeing it once or even for a few days may not change their practice all the time, but at least there will be the realization that medicine need not necessarily be all technology, and what genuine compassion can achieve is amazing.
All of us heard with mind-numbing shock the news of the horrible air crash at Mangalore in South Karnataka on 22nd May in which 158 lives were lost.
8 survived miraculously, among whom 3 are in a critical state. In the midst of this terrible tragedy shines the heriosm of the local population. They rushed to the site uncaring of the risk to their lives, improvising with available resources to work hand in hand with the official force.
Their service was invaluable; their humanity, incomparable. Such experiences exemplify the spirit of volunteerism that the Palliative Care Movement has brought to the surface in this country.