October 2014 Newsletter

2014 October 31
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Dear Friends,

image03October 11 was World Palliative Care Day. We really had a heartwarming Palliative Care Day at Trivandrum. Several events were organized to commemorate the day, including the Sangeetha Sandhya, a musical event, at Al-Saj Convention Centre, Kazhakoottam.

The question on the mind of everyone who was part of the event was, What makes them do it? Why should somebody as busy as the very popular music director and singer, M. Jayachandran, a television presence like Rimi Tomy, or any of the very talented and busy musicians give up a whole day for palliative care?

Jayachandran has always supported palliative care and this is the third time he has organized such events on World Palliative Care Day. All the musicians who participated in the event volunteered their services pro bono and played to a packed hall.

The aim of the event was to raise awareness among people so that pain relief and palliative care will reach each one of the needy in our country.The media partner for Sangeetha Sandhya was Mathrubhumi. Mathrubhumi News channel ran streamers on the event, and media in general carried the story prominently.

Jayachandran, the 14 musicians who volunteered their time, the media that supported it – all show how warmly Kerala embraces palliative care. In answer to the question in this year’s theme of the world palliative care day – Who cares? they proclaim, “WE DO”.

To see more photos on the event, please click here.

Print and Visual media in Trivandrum take Palliative Care to their hearts

We really had a heartwarming Palliative Care Day at Trivandrum. The media made our day. Two articles appeared in the editorial pages of two very popular Malayalam newspapers, Kerala Kaumudi and Mathrubhumi. In Kerala Kaumudi, the author describes his own journey as a medical student who is systematically forced into an emotional detachment from human suffering, palliative care helping him to overcome that, and why palliative care education is essential for all medical and nursing students.

In the article in Mathrubhumi, he apologises to the many people in Kerala who still die in pain, despite twenty years of palliative care activity and despite a state palliative care policy. He urges everyone to give voice to the voiceless.

Later on in the morning, the Trivandrum Press Club, under the leadership of its President, Mr. P. P. James, organized a Meet The Press program where Dr Rajagopal got the opportunity to interact with an audience of about 40 (including journalists and journalism students). The fifteen minutes that were set aside for follow-up turned into one full hour of discussion. The enthusiasm in the group was palpable. While concluding the session, Mr James asked the group whether anyone was willing to undergo a 2-day volunteers training program offered by Pallium India. About twenty hands shot up. What a gratifying day! We believe journalists are some of the most important people for purpose of advocacy, which is perhaps the greatest need in the next few years.

Please visit the following links to see some of the coverage given to palliative care on visual and print media:

Sneha Santhwanam: A professional drama on palliative care

SnehasanthwanamA gift in Malayalam in connection with World Palliative Care Day 2014.

Does anyone know of a professional drama with palliative care as its main theme?

The play which opened in Kartika Thirunal Theatre on 10 October 2014 could well be the world’s first!

“SNEHA SANTHWANAM” was inaugurated by Shri V. S. Sivakumar, Hon’ble Health Minister of Kerala, at 6 PM on 10th October, 2014 at Karthika Thirunal Theatre, Trivandrum. The drama is presented by the troupe Aksharakala. It is written by Gopinath Kozhikode and directed by Meenambalam Santhosh. The hall was full with theatre-lovers and was hugely successful.

Thank you Gopinath, Santhosh.

Walkathon at Trivandrum in support of Palliative Care

WalkathonAt 9 AM on October 14, Kanakakkunnu Palace at Trivandrum began to fill with youth in white T-shirts, carrying the message “Who Cares? We Do!” They were students from different schools in Trivandrum who had gathered to participate in the Walkathon, organised by Alpha Palliative Care, Thrissur, and Pallium India. The event was organized in association with this year’s World Palliative Care Day. The initiative by K. M. Nooruddin and team of Alpha Palliative Care was aimed at spreading the message of palliative care across Kerala.

Kerala’s Health Minister, Shri V.S.Sivakumar, Education Minister Shri P. K. Abdu Rabb, N.H.M District Project Manager Dr Unnikrishnan and many others were present at the occasion. Shri Nooruddin read out the pledge to everyone present.

35 auto drivers from Medical College area were also part of the event under the leadership of Mr Manmathan and Mr Manikantan. These remarkable human beings had taken an oath that they will help any helpless or sick person that they come across by the roadside and that they will never ignore those who need their assistance, even though this might mean digging into their own pockets to help others.

Pallium India is fortunate to have been a part of this event. We hope that the message will reach every corner of Kerala and people will rise to provide a helping hand to those in need.

Attention: RMIs in Kerala, India

All the institutions in Kerala that are Recognized Medical Institutions for stocking and dispensing morphine, please note: it is time to submit the annual consumption data and the annual requirement for the next year to the State Drugs Controller.

The consumption data is to be prepared for the period from November 1, 2013 to October 31, 2014. Please arrange to have the data submitted as early as possible to avoid any delay in allotment of next year’s quota.

The required form (Annexure 3) is available at: http://palliumindia.org/cms/wp-content/uploads/2014/10/ANNEXURE-III-Annual-estimate.pdf

Last year, several institutions got into trouble because of errors made in calculation. The institutions use morphine in various strengths and the consumption data have to be submitted in terms of grams. Unfortunately, those that made an error with under-calculation, got only the smaller quantity allotted in the subsequent year.

Anybody who needs help in filling up the form, please get your consumption data ready in terms of number of tablets and contact the Information Centre of Pallium India. (Telephone: +91-9746745497. E-mail: info@palliumindia.org). Our Information Officer, Mrs Sheeba Shaju, will assist you in making the right calculation.

HRW on Mexico: India is a “powerful example”.

Diederik Lohman“India is a powerful example”, says Mr Diederik Lohman in an interview on Pain Relief for Mexico’s – and the World’s – Terminally Ill. “After our report launch in 2009, and much advocacy by many organizations, India decided to change its drug law, which impeded access to pain medicines for people dying of cancer. The fact that India made these changes because it does not want to condemn its people – 1/6 of the world’s population – to unnecessary suffering is a powerful message. We hold up India as an example to other countries to convince them to change their drug regulations.”

Read: Mexico: Needless Suffering at End of Life

India, Mexico, Senegal. So much pain and suffering. So huge opportunities to reduce that burden. If only we care.

Thank you, Mr Diederik Lohman. Thank you, Human Rights Watch.

Congratulations, Dr Ekbal, and Thank you for supporting us.

Dr EkbalDr B. Ekbal is a social luminary, thinker and former Vice-Chancellor of Kerala University. He recently got a prestigious award – Thiruvallam N. Achuthan Nair Foundation award. He divided the award money between different charities and we are proud to say that he donated one share to Pallium India’s educational activities.

Thank you, Dr. Ekbal. Very well-deserved award, and a huge support for us.

A voice for the voiceless

Mathrubhumi Oct 21The following article was published in the Mathrubhumi Malayalam daily dated October 21, 2014, in response to Dr M. R. Rajagopal’s piece in the same newspaper on October 11.

(To read Mr M. A. Rahman’s article in Mathrubhumi’s e-paper, please click here.)

You chose to speak out, Mr M. A. Rahman, and be the voice of the voiceless. Your voice certainly counts a lot.

Pallium India wishes to convey respect and admiration for your work and would consider it a privilege to get to know you and your organization better.

Health Care Institute discusses newer trends

HCIThe Health Care Institute formed in 1998 in the historic town of Kodungalloor in Kerala has been an innovator in palliative care. As their website says, “HCI realm is not one of inherent unequal power equation between a doctor and a patients or the charity of the donor and volunteer. HCI tries to triumph over the routine. It seeks to create an ambience of freedom.”

Pallium India was privileged to have an evening with the dynamic activists at HCI. They discussed the newer trends in palliative care, the World Health Assembly’s declaration of 2014, how palliative care is expanding into the territories of acute life-threatening diseases, how the over-medicalization of death is causing suffering and what we can all do about it.

Congratulations, Health Care Institute. We applaud your free thinking.

image06Palliative Care Information Centre

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: info@palliumindia.org

  • Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum

  • For more details, please visit: http://palliumindia.org/info-centre/

“My Mother Did Not Go Bald” – Reviews

Nazeem BeegumNazeem Beegum’s book “My Mother Did Not Go Bald” has been getting positive reviews since its release in September.

The Hindu, in a review titled “Living in the shadow of the big C” writes that “The honesty on each page is what makes this work different… Nazeem’s words paint the harsh picture of patients living in the company of death and pain while their relatives try to make sense of the new realities thrown up by the emperor of maladies.” ( Read the review in The Hindu )

In its review titled “Song From the Broken Heart“, The New Indian Express calls “My Mother Did Not Go Bald” a compelling read. “Nazeem’s narrations strike a chord with those who go from being shell-shocked to numb in the matter of days, when a terminal disease hits their loved ones.” ( Read the review in the New Indian Express )

Copies of “My Mother Did Not Go Bald” are available for sale at Pallium India reception, Arumana Hospital, Trivandrum for Rs. 100. The book can also be purchased from Amazon and DC Books store.

The kind author has announced that all proceeds from the sale shall come to Pallium India for supporting people who need care.

Dying without Morphine

“In a powerful documentary, The Pain Project, India’s leading palliative care specialist, Dr. M. R. Rajagopal, explains that India’s narcotic regulatory agencies are so irrationally stringent that in 27 of the country’s 28 states doctors simply avoid prescribing morphine for cancer pain, for fear of running afoul of the law,” writes Ronald Piana in the article Dying Without Morphine, published in the New York Times on September 30, 2014. The author notes that despite the World Health Organization’s statement that access to pain treatment, including morphine, is an essential human right, about six million terminal cancer patients around the world endure suffering because they do not have access to morphine.

The Pain Project is a documentary by the International Reporting Program on the situation in India, Ukraine and Uganda. The International Reporting Program found that “a combination of bureaucratic hurdles and the chilling effect of the global war on drugs are largely to blame, leaving humanitarians scrambling to work outside the law — or change the law — to bring relief to suffering patients all over the world.”

“Untreated cancer pain is a human disaster not unlike famine; its victims are starving for relief,” writes Ronald Piana. “Witnessing a clinic full of poor children with advanced cancer, crying in agony, should convince anyone that access to morphine is a human right.”

Watch the video, The Pain Projecthttp://www.internationalreporting.org/pain/

One more training centre in North India – GCRI, Ahmedabad

We are glad to announce the starting of one more palliative care training centre; this time in Gujarat Cancer & Research Institute (GCRI) Ahmedabad, thanks to the initiative of Dr Geeta Joshi, who heads Palliative Medicine Department and is the Deputy Director of the Institute, and thanks to the support from Pallium India – USA.

So far Pallium India has been able to work with other institutions to develop the following training centres: one each in Trivandrum (Trivandrum Institute of Palliative Sciences), Hyderabad (Regional Cancer Centre at MNJ Institute of Oncology) and Jaipur (Bhagwan Mahaveer Cancer Hospital & Research Centre). And we are working with Saroj Gupta Cancer Institute and Research Institute and with East India Palliative Care (EIPC) to upgrade their training facility. The beginning of the training centres in Jaipur and Ahmedabad are major achievements because North India has practically no other facility. Now doctors, nurses and others from North India do not have to travel all the way to South India any more.

The first six weeks course for doctors and nurses at GCRI, Ahmedabad will be our major celebration on New Year Day, the first of January, 2015. (Details on the course will be updated to Pallium India’s website soon.)

Congratulations, Dr Geeta Joshi, and thank you very much, Dr Jerina Kapoor of Pallium India USA, for the support.

Energizing Kochi

ISA KochiKochi (Cochin) is perhaps the most vibrant city in Kerala, forming the business hub of the state. Pallium India got energized by three events in Kochi in which it took part. The first was on the 6th October 2014, where we had an elaborate discussion with the local branch of Indian Society of Critical Care Medicine (ISCCM). You might remember our earlier communication, announcing the joint declaration by ISCCM and Indian Association of Palliative Care (IAPC) regarding End of Life Care in the context of critical care.

On the 16th of October, 2014 (World Anaesthesia Day), we had two events. The first was the opening of a new palliative care centre at Lisie Hospital, Kochi. This is really a major event. A pharmaceutical company associated with the institution and housed within its campus has been making low cost morphine for all Kerala, for about 15 years. The hospital now starts its own palliative care service.

And finally, we had a meeting organized by the Cochin branch of the Indian Society of Anaesthesiologists. They gave an award of honour to the Chairman of Pallium India, Dr M. R. Rajagopal, and in the process, handed over a sheaf of cheques, more than twenty of them – collected by the members and well-wishers – to go towards support for Pallium India.

So much activity, so much enthusiasm. We are proud to work with activists in Kochi.

Doctors’ views on suffering: a study

Dr Odette Spruyt, a member of our association, is conducting a qualitative study exploring the views of doctors working in Australia and India, about suffering. This study has ethics approval from Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia, and Lancaster University, UK. It is being conducted as a PhD palliative care project, under supervision from Lancaster University Faculty of Health and Medicine, Division of Health Research.

Doctors working substantially in palliative care are invited to consider participating in this project. For more information about the study and how to participate, please refer to this flyer.

If you are interested, please complete the Expression of Interest form at the end of the flyer and scan/email or fax to Dr Odette Spruyt at odette.spruyt@petermac.org

A forum for palliative care nurses

Nurses Association InaugurationThe inaugural conference of the Association of Community Nurses in Palliative Care was held in Kozhikode recently. The conference was opened by Calicut University Vice Chancellor M. Abdul Salam.

The forum would help palliative care nurses to raise their concerns and work towards improved training facilities and better compensation.

Director of the Institute of Palliative Medicine, Dr. K. Sureshkumar, palliative care organiser, Jose Pulimootil, Dr Anil Kumar Paleri, State president of the nurses association, K.V. Sinimol, and many others spoke on the occasion. More than 100 nurses from different parts of Kerala attended the conference.

  • Read the report in The Hindu.
  • Click here to read about the Association of Community Nurses in Palliative Care (in Malayalam).

Courses on Palliative Care in Trivandrum, Hyderabad and Gujarat

Trivandrum:

Certificate Course in Pain and Palliative Medicine (CCPPM), Certificate course in Palliative Nursing (CCPN) and Certificate Course in Palliative Care (CCPC) commence on November 3, 2014 at Trivandrum Institute of Palliative Sciences, Arumana Hospital, Trivandrum. Contact: info@palliumindia.org,  +91 471-2468991

2-day Volunteers Training Program will be conducted at Trivandrum Institute of Palliative Sciences, Arumana Hospital, Trivandrum on Nov 20 & 22, 2014. Contact: info@palliumindia.org,  +91 471-2468991, 8589998762

Hyderabad:

One Month Certificate Course in Pain and Palliative Medicine (CCPPM) for Doctors, Nurses, Social Workers and Volunteers commence on November 3, 2014 at MNJ Institute of Oncology & Regional Cancer Centre, Hyderabad. Contact: mnj.palliative@gmail.com, (+91)91772 38901

Gujarat:

Six weeks Certificate Courses in Pain and Palliative Medicine (CCPPM) and Palliative Nursing (CCPN) will commence on January 1, 2015 at The Gujarat Cancer and Research Institute (GCRI), Ahmedabad, Gujarat. Contact: palliumindia.gcri@gmail.com, dr.geetajoshi@gmail.com. Phone: 079-22688270, 9824075707

Cancellation of six weeks course in February at Trivandrum

Pallium India apologizes for the inconvenience caused to anyone who was planning to attend our six weeks certificate courses in February 2015. Due to unavoidable demands on the faculty’s time and clashes of schedules, we have been forced to cancel the courses in February 2015.

Please note: The course starting on 3rd November, 2014, will go as scheduled, and the next six weeks course will start on 6th April, 2015.

For more details on our courses, please visit: http://palliumindia.org/courses/ If you have any queries, please write to: info@palliumindia.org

We are making progress with undergraduate medical education and palliative care

On the 28th of October, Pallium India spent a whole day with newly qualified doctors at SUT Academy of Medical Sciences, Vattappara, Trivandrum. They have just passed their MBBS examination and are going to have one year of practical hands-on experience as house surgeons before they become full-fledged doctors.

What enthusiasm! We are so very glad that we had the opportunity to talk to them before their first day as doctors. They are so full of eagerness and compassion, and somehow we have to make sure that the health care system does not make them numb and unresponsive. Here are some of the responses:

“Very intriguing and moving. Till now, I was in total darkness about the plight of millions of people in horrific pain.”

“Sessions were very informative and addressed many issues that I would not have otherwise noticed. It made me realize that my chosen profession is indeed a noble one.”

“Till now we were not aware about pain and palliative management which is highly essential as being a part of medical system.”

Young doctors, all the best to you. May you enjoy your profession.

The Elders and Palliative Care: a date with the Social Security Mission, Kerala

On the 22nd of October, Pallium India spent time at a workshop organized by the Social Security Mission of Kerala, a vibrant, dynamic governmental organization.

India’s healthcare system has had a national policy for elder care, for a long time. Unfortunately, for the vast majority of the 70 million-odd elders in India, quality care is not within their reach. A significant majority of the elders needs palliative care.

At least in Kerala, the palliative care activity has established a rich network all over the state. It makes so much sense for the two activities to work together, making a tremendous impact.

The meeting on October 22nd discussed these modalities in detail. We hope to move forward!

End of Life care is still an unknown among doctors

A report in The Times of India dated October 11 says:

A multi-centric study initiated by the All-India Institute of Medical Sciences –including Lucknow as a centre — revealed that seven out of 10 doctors dealing with terminally ill patients were not aware of hospice and palliative care. And so, they were not referring their patients for end-of-life care options. However, in western countries, as soon as a person is diagnosed with a life-limiting disease, the patient is attached with a hospice.

(Read the complete article: End-of-life care facility in UP soon, but no policy yet )

The fact that 70% of doctors are not aware of this in North India does not come as a surprise to us. This is the big task before us; to improve awareness. The question remains: what is the perception of the other 3 out of every 10, who are aware of palliative care? How close is their understanding to the reality? Much too often, there are major misconceptions.

Determining the cost of palliative care delivery

In a recent article published in the Journal of Pain and Symptom Management by Daniela Mosoiu, M Dumitrescu and Stephen R Connor, a team based in Romania have developed standardized costing methodology and framework for delivering palliative care services. Using this framework, palliative care providers can enter their data to generate cost relevant to their health care systems.(Developing a costing framework for palliative care services. Journal of Pain & Symptom Management, 2014; 48(4):719-29).

It was found that inpatient palliative care cost in Romania was $96.58 per day and home-based palliative care was $30.37 per visit. Knowing the cost would help palliative care organizations to forecast their financial needs and to request funding. It is also important to know the palliative care delivery expenses so as to facilitate the implementation and expansion of palliative care services in the country.

To read more about this research and to download model costing framework for home based care and inpatient care, visit: http://www.ehospice.com/ArticleView/tabid/10686/ArticleId/12790/language/en-GB/View.aspx

PARTING SHOT

The Ecstasy and the Agony: Working with the Paralysed

People ask us:

How can you keep working with so much of suffering? Is it not depressing?

And we keep responding, “There is pain in it; but also enormous satisfaction.”

Let us tell you the story of Geetha (not her real name).

We are very proud of our extended family structure. But everything in this world has its positives and negatives.

Geetha had an accident and became paralysed from the waist down. She has a loving husband and two loving children. Geetha came to us in tremendous pain, both of the body and of the mind. It was easier to take care of the physical pain. Our wonderful team that we are so proud of – Dr Shibu, the Physical Medicine specialist, Mr Sunaj, the Physiotherapist, and Ms. Vergin, our social worker – worked with her.

Today, Geetha, who used to be bed-bound all the time, has learned how to move herself from the bed to a wheelchair and she can now cook and take care of the children. How fulfilling it is for a mother to be able to do her children’s hair and to look after their various needs!

Despite all this, despite the love of the husband and children, the dynamics of the extended family were such that Geetha is having to move out of her home. She is going to be an inmate in a special care place. We rejoice for your new-found freedom, Geetha; we also weep with you, for having to leave your home.

May you discover new worlds and may you revel in the love that your husband and children are giving you, and the love that you are giving them.

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