May 2013 Newsletter

2013 May 31
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Dear Friends,

Let us congratulate the, palliative care pioneers in Tamilnadu, India. On the 8th of May 2013, the chief minister of Tamilnadu announced a palliative care project at a cost of Rs. 165 million in a speech in the Legislative Assembly.:

“For all those patients who are living with sufferings of pain and other symptoms due to the Incurable illnesses and bedridden due to old age, to relieve them from pain and other symptoms, the state Government introduced a pilot project in Thiruvallur, Kanchipuram, Villupuram and Tiruchirappalli Districts in collaboration with Non Government Organizations, by selecting a Block in each District in 2011-12.

On realizing the beneficial outcome of which, I am pleased to extend the Community Based pain relief and Palliative Care for all the Districts in the state at the cost of Rs 16.5 crore.”

Sign the Prague charter

European Association of Palliative Care (EAPC) which is currently meeting in Prague, presents you with the Prague charter which urges Governments to relieve suffering and recognize palliative care as a human right.

It’s demands:

  1. Governments should develop health policies that address the needs of patients with life-limiting or terminal illnesses.
  2. Governments should ensure access to essential medicines, including controlled medications, to all who need them.
  3. Governments should ensure that healthcare workers receive adequate training on palliative care and pain management at undergraduate and subsequent levels.
  4. Governments should ensure the integration palliative care into health care systems at all levels.

Please sign the charter here…

Amazing Amount of Work Done!

amazingworkMore than 20 experts including one each from UK (Max Watson), USA (Jo Eland) and Germany (Jochen Beckel- Ebel), and from various parts of the country got together for four full days at Trivandrum to sit around a few tables and work on palliative care curricula for India.

Many of the participants paid for their own travel and came. The event was organized by Pallium India in collaboration with the Institute of Palliative Medicine at Calicut and the Indian Association of Palliative Care (IAPC).

During the first day and a half, it was more of a learning process, led by Dr Vinod Shah and Dr Anparasi from Vellore, about the principles of e-learning. Bearing the principles in mind, under the leadership of Dr Max Watson, three groups worked together and separately, to create curricula for undergraduate medical and nursing curricula, for a trainer’s program, and for training for physicians to empower them to manage pain and to lead a “Recognized Medical Institution” (RMI) for the same.

Thank you each and every one for making this possible. The work will now continue over email and we expect the documents to be complete by end of July 2013.

Elisabeth Kubler-Ross honored in Switzerland

Elisabeth Kubler-Ross who came to be called (with affection and respect) the “death and dying lady” receives the posthumous honor of having a street in Switzerland named after her. Her son, Ken Ross who heads the Kubler Ross Foundation, writes to give us the news from the city council.

Elisabeth-Kubler-Ross“In recognition of her world famous work, the Council of Meilen gave the Meilemer honorary citizenship on March 10, 1998 to Dr. Elisabeth Kübler-Ross who became the first woman with this honor. The Council now uses the opportunity to name the new road in the area close to her former home – Kübler Ross Street. Thus, the municipal council would like to express their respect and it’s tribute to the pioneering work of Dr. Elisabeth Kübler-Ross and give a fixed place in miles for our Meilemer honorary citizen.”

Translated into the Indian language Malayalam, Kubler-Ross’s famous “On Death and Dying” is being published in Pallium India’s monthly, “Sahayatra”.

While paying our respect to the departed guru, we thank Ken Ross and the publishers for the kind permission to publish the book in Sahayatra in serial form.

Not-so-good news from Indian Parliament

The eagerly awaited amendment to the Indian Narcotic Drugs and Psychotropic Substances Act did not materialize.

Despite all the advocacy efforts, it got submerged in the pile of pending matters.

Now we hope for action at the monsoon session of the Parliament in July 2013.

Breaking new ground in Kulasekharam, Tamil Nadu

Kulasekharam Stephen KevinSuch excellent news! Pallium India is happy to associate with Pallium Kulasekharam started by Dr P. K. Sukumaran Nair and colleagues in Kanyakumari District of Tamil Nadu. The opening ceremony was held in an auditorium, which after the event was converted to an outpatient clinic.

On the first day itself – 24th of May 2013 – we saw 14 patients:

  • Three of the 14 with advanced cancer had pain of score 10 on a 0-10 scale.
  • One was a destitute.
  • The only medication being taken by two very poor patients was a multi-vitamin-mineral capsule prescribed by a doctor in their cancer hospital – one capsule costing Rs. 60 (Remember that poverty line in India is defined as an income below Rs. 28 per day)

To look on the bright side – what an enthusiastic group of volunteers! Dr Sukumaran Nair and Mr Namboodiri have got several voluntary organizations to join the initiative.

Sevathon 2013: July 14 – Register Now!

Sign up & spread the word!

Sunday 14th July 2013 – 7.30am onwards

Baylands Park, Sunnyvale, CA

5K/10K/Half-Marathon

Download PDF flyer & register here…

We look forward to seeing you at Sevathon 2013!

Side event at World Health Assembly

Strengthening Palliative Care as a Component of Integrated Treatment Throughout the Life Course Co-hosted by the Permanent Missions of Panama, USA and Uganda, together with ten civil society organisations including Human Rights Watch, the World Palliative Care Association and UICC, this side event brought together over 70 representatives from governments and civil society to discuss palliative care.

Please see: http://www.uicc.org/palliative-care-agenda

David Lock: What does duty of care mean?

Read the shocking cruelty that a dying person and daughter was subjected to.

David Lock: What does duty of care mean?

This is a serious blog about death, about what can go wrong in the dying process and how it can be put right. It arises out of an inquest where I represented a family member who found the medical and caring profession had misunderstood what was meant by a “duty of care” and tried to impose futile treatment on a dying elderly woman when she ought to have been allowed to die in peace and dignity. I urge you to read on if you have the time because this is a case which shows what should not happen and, as a result of the decisions of the coroner to write formal letters under Rule 43 of the coroners rules, it might lead to changes in practice in this vital area of care. – Read more here…

We need to stop to think; this is not about “them” but about each one of us.  Some day.

Thank you Dr C Bharat Chandran, and thank you, S.U.T Hospitals

We thank Dr C Bharat Chandran and S.U.T hospitals for providing Pallium India with space, staff and all facilities for all of seven years.

They have spent many millions for us over these years. Their severe constraint of space has forced us to move out, but they helped us when we needed support most.

We are infinitely grateful to them.

Palliative care in Border Security Force

It is very heartening to see that slowly but steadily, access to palliative care is growing in India and that the growth is receiving public attention.

See the article on the work by the palliative care pioneer, Dr Savita Butola in Border Security Force.

Savita Butola dainik jagran article

News from the good Samaritans at APLI

Please see the newsletter from Australasian Palliative Link International (APLI) to read about the progress with our Project Hamrahi.

In this scheme, doctor nurse teams from Austalia link up with one of the palliative care centers that Pallium India has catalyzed in various parts of India and provide continued support to them.

In this issue, read about the visit by Dr Christine Drummond and Ms Valerie Hughes to Agartala in Tripura where a new palliative care functions in the Regional Cancer Center and reaches out to the community. And also about the persistent efforts of Dr Anil Tandon and Ms Wendy Scott to Jamshedpur in the state of Jharkhand.

Pallium India is indeed grateful to all contributors to Project Hamrahi.

10 core competencies – from EAPC

The newsletter from APLI also introduces us to the document from EAPC – 10 core competencies for palliative care professionals.

They are:

  1. Apply the core constituents of palliative care in the setting where patients and families are based
  2. Enhance physical comfort throughout patients’ disease trajectories
  3. Meet patients’ psychological needs
  4. Meet patients’ social needs
  5. Meet patients’ spiritual needs
  6. Respond to the needs of family carers in relation to short-, medium- and long-term patient care goals
  7. Respond to the challenges of clinical and ethical decision-making in palliative care
  8. Practise comprehensive care co-ordination and interdisciplinary teamwork across all settings where palliative care is offered
  9. Develop interpersonal and communication skills appropriate to palliative care
  10. Practise self-awareness and undergo continuing professional development

We think this is a great document for all palliative care institutions to remember, particularly those that teach the subject.

And we can stop with the ten in the context of the developed world perhaps, but for the developing world (remember, it is 80% of the world), we would add two more:

  • Acquire and apply managerial skills.
  • Acquire and apply advocacy skills – both media and Governmental advocacy.

We think these are particularly important in the developing world situation where the palliative care champion is equipped with a lot of desire to help others, some professional knowledge and very little else.

With medical students like this around, the future is bright!

“….Our findings only highlighted what we suspected all along – hardly any of the patients were receiving palliative care and were in grave suffering, the relatives were burnt out by the endless service they gave to the patients and the doctors were, unfortunately, poorly informed about palliative care, its centres and its scope.”

Yash Gore and teamThus write Mr Yash Gore and friends, medical students from Mumbai, who refused to be bound down by their outdated syllabus and dared to venture beyond it.

Their presentation won the First Prize at TRINITY 2013, the All Maharashtra Medical Research Conference.

Congratulations, Yash and colleagues. Please read the whole article.

CareVision India in Kolkata and a photography competition

CareVision Kolkata competitionDr Sanghamitra Bora informs us about her new Non-Government Organization , Care Vision India (CVI).

Based in Kolkata, it is a not-for-profit organization dedicated to promotion of palliative care service provision and promotion in Kolkata and neighbouring areas.

At CVI a team of highly motivated professionals have been actively engaged in providing palliative care services through its home based palliative care project – SAHAYATRA, since December 2012.

As part of their advocacy campaign, they conducted a photography competition for children. Please see the photographs from the event.

Dr Roger Goucke and the Essentials in Pain Management (EPM) program

13 04Dr Roger Goucke from Perth, Australia, spent a week with Pallium India in Trivandrum in early May 2013 braving the summer heat, conducting the EPM course, in which health workers are taught not only the essentials of pain management, but also to teach it to others. We do aim for some serious follow up action.

Dr Goucke also joined the local experts to conduct a one-day workshop for doctors from all over the state on 10 May 2013. Organized by Dr Gopakumar, Dr Baburaj and colleagues on behalf of the Trivandrum branch of Indian Society of Anesthesiologists, this was successful program held at the Regional Cancer Center reached out to 30 doctors. This was followed by a three day conference on Anesthesiology, Critical Care and Pain management.

The growing interest of medical professionals in pain management is palpable.

It was Pallium India’s privilege to work with the Indian Society of Anesthestists on these programs.

IASP Pain management camp

IASP Pain Mgt camp April 2013Dr Jane George introduced us to the man sat with downcast eyes in his wheel chair. In his teens, he was diagnosed to have systemic sclerosis. His agonizing pain was unrelieved, and he eventually learnt to manage his pain by buying opium on the streets. The police caught him and he went through two years of hell in prison. Eventually, he managed to reach the Pain Management Centre, where on opioids and non-pharmacological measures, now his pain is under control.

The demonstration of a real time pain management was given during the Pain Management Camp. Preceding the conference of Association of South East Asian Pain Societies, the International Association for Study of Pain (IASP) organized the Camp at Singapore, from 28 April to 02 May 2013. Participants included enthusiasts in Pain management from the region.

Kuttikkoottam (Kids’ Kollective)

kuttBrigadier Oomen John, Ajayan Koodal, Rema, Leela, Raji and many other volunteers took the lead to organize another summer camp for children whose education is supported by Pallium India at Trivandrum.

Out of around 200 children thus supported, around 60 got together at JMM Study Center in Nalanchira, where in association with them and with Ebenezer Palliative Care Center, Pallium India organized the summer camp.

A nice blend of learning and fun, the difference the summer camp makes to the grey lives of these children was almost palpable.

Congratulations to the organizing team and thanks to the numerous people who contributed to make the program a success.

What is in a movie show? A lot of love.

For most of us, any movie is just another one in a long stream of not-so-significant events in our lives. Ever thought about kids who have next to no chance of seeing one?

Mr Gireesh Kumar who owns the Sree Padmanabha Theatre in Trivandrum is a special kind of person. For the last couple of years, 1% of profit from the theatre has come to Pallium India to fund children’s educational and other forms of support.

On 25 May 2011, there was a special free show for children of the Malayalam movie “Emmanuel” starring the superstar Mammootty, an ardent supporter of palliative care.

Children from families of patients whose education Pallium India supports were included in this year’s program. How many businessmen could think about the emotional needs of children and about how they also need some fun in their lives!

We fold our hands in respect and love, Gireesh.

PARTING SHOT

Thank you Sofia!

University of Iowa student Sofia Danziger and friends, working on behalf of Sigma Lambda Gamma National Sorority Inc. – Alpha Chapter and Sigma Lambda Beta International Fraternity Inc.- Alpha Chapter, decided to fund-raise for Pallium India.

Please see: http://www.indiegogo.com/projects/hope-for-pallium

Sofia and colleagues, you touch our hearts. Thank you.

Why Not Donate? Every little bit helps.

  • $ 5 will pay for Medicines for a week
  • $ 20 = Medicines for a month
  • $ 80 = Schooling support for one child/year
  • $ 500 = Vocational rehabilitation for a family

Visit palliumindia.org/donate

Don’t forget to sign the Morphine Manifesto!

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