May 2012 Newsletter

2012 May 31
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A journalist’s moment of reckoning

“As a journalist there are several stories that have captured my imagination. But believe me, this (the feature on Pallium India and its work in palliative care) was one story that touched the very core of my being. In fact when I met my colleagues at Thiruvananthapuram, I just broke down because the pain and loneliness of the people I met had permeated into my very being.

Of course, my own status as a cancer survivor, has lent a dimension of poignancy and empathy that would be quite difficult to come by otherwise. As they say, there is no substitute for lived experience, is there? I feel I have found my purpose in life: meaningful and sustained involvement with palliative care”.
– Dr Nandini Murali, Senior Correspondent, Housecalls magazine. 

There must be many thousands of people who are kind-hearted like Nandini and would help if only they knew of the need and what they could do. We need to reach them. We repeat, advocacy is the key.

Dr Nandini Murali had joined our team at Trivandrum for a day of home visits.

Voicing the rights of people to adequate palliative care: Pallium India at World Health Assembly

Pallium India’s TIPS (Trivandrum Institute of Palliative Sciences), now a WHO Collaborating  Center, was privileged to be one of the 11 co-sponsors of a side-event, ‘Reducing the burden of pain and suffering: developing palliative care in low and middle income countries’, at the World Health Assembly, the decision-making body of the World Health Organization (WHO) at Geneva on 23 May 2012, the other co-sponsors including the Governments of Kenya and Uganda, World Medical Association, UICC, IAHPC, WPCA, Human Rights Watch and Open Society Foundation.

The event was very well-attended and highlighted the need for global action to reduce the disease-related burden of suffering in the world. Government of India was represented by Special Secretary of Health, Sri Keshav Desiraju. We are grateful for his support.

On the 26th of May, the World Health Assembly approved a resolution calling for a 25 percent reduction in premature mortality from non-communicable diseases (NCDs) by 2025.

Photo credit: @RennieSloan

Easing the Transition: NICE guidelines support better pain relief for dying patients

The UK’s National Institute for Health and Clinical Excellence (NICE) has, on 23 May 2012, published a new guideline, Opioids in palliative care (CG140),  to help ensure consistent and adequate prescribing of opioids for patients with terminal or chronic conditions.

The guidelines will support: better communication between healthcare professionals and patients receiving strong opioids, as well as providing consistency across all healthcare settings.

Sarah Wootton, Chief Executive of Compassion in Dying said:

“Compassion in Dying supports patients to have the best death possible for them by ensuring they understand their rights at the end of life, so that they are at the centre of decisions made about their end-of-life care and treatment.

The welcome new guideline addresses two of the barriers many patients face in having a good death; adequate pain relief and good communication.  It is crucial that patients are as informed and involved in their end-of-life care and treatment decisions as possible, and it is vital that they receive enough pain relief.

This guideline will support healthcare professionals in providing good end-of-life care across all settings, and will help to ensure that many people have what they consider to be a  good death with their pain properly managed.”

BBC coverage on the report:

Another milestone for Pallium India: Fruitful collaboration with Child Family Health International (CFHI)

Pallium India is privileged to have struck up an alliance with Child Family Health International (CFHI). It is difficult to believe that this remarkably successful organization was founded by a medical student (Ms Evaleen Jones) many years ago.

Through CFHI, we had the privilege of having four pre-medical students from USA with us for a month. Here are some words that some of them had to say about their time with us.

– “My time here has so far been quite therapeutic in some way and I feel that me coming here was not only to learn about palliative care but also about myself.”

– “…what we’ve been learning from you and Pallium India about dying patients in the ICU and the PTSD it causes not only for the patients but for the families. I love the one quote about how palliate care adds life to their days, not days to their life”.

– “I’m still so amazed at how we all get along in class and at the hospital; we’re all so different yet somehow we connect in that we are in this program together and facing the same things”

– “I speak for myself, as well as the other girls, when I say that we are in the presense of great company at Pallium India.”

Thank you dear Alex, Lindsey, Maggie and Nicole. We truly enjoyed having you with us. Thank you for your kind words and for putting up with our inadequacies and inconveniences.

Thanks also: to Ms Hema Pandey for being there for them and for us, to Evaleen, and Jerina for the connection.

IAHPC Traveling Scholarship to 19th International Congress on Palliative Care

The International Association for Hospice and Palliative Care (IAHPC) is pleased to announce 10 scholarships from the IAHPC Traveling Scholarship Program, to help support the travel of palliative care workers in developing countries to the 19th International Congress on Palliative Care presented by McGill University. The Congress will take place in Montreal, Canada, October 9-12, 2012.

Applications from physicians, nurses, psychologists, social workers and other disciplines are welcome. Applicants must be:

  • living in a developing country
  • be active members of IAHPC (join here)
  • actively working in palliative care
  • APPLY HERE

Deadline to apply is July 15, 2012. Results will be announced by the end of July.

Preference will be given to individuals who have not received an IAHPC grant in the past three years with accepted poster or oral presentations in the Congress. Selected individuals are also eligible to receive a discounted registration fee from the Congress.

Information about the Congress can be found here…

If you need information on how to apply or how to become a member, please contact Ana Restrepo at amrestrepo@iahpc.com

Florence Nightingale Award to Suresh Thaliyaril

The coveted National Florence Nightingale Nurses’ award this year goes to Mr Suresh Thaliyaril of the Delhi National Initiative in Palliative Care (DNIpcare).

He received the award from Ms Pratibha Devisingh Patil, the President of India on 12 May 2012.

This recognition is an encouragement for every one in the Palliative Care field in the country.

Congratulations, Mr Suresh Thaliyaril!

IAHPC List of Essential Practices in Palliative Care

In a project which included the participation of individuals and representatives of pain and palliative care organizations, the International Association for Hospice and Palliative Care (IAHPC) recently developed a list of essential practices in palliative care.

Under the framework of the “essential” concept, the IAHPC decided to work in different projects aimed to identify the “essential” components for palliative care. This list of Essential Practices follows the IAHPC List of Essential Medicines in Palliative Care developed in 2007 and the Opioid Essential Prescription Package developed in 2011.

The list of essential practices in palliative care for health workers working in primary care includes those practices aimed at meeting the most prevalent physical, social, psychological and spiritual needs of palliative care patients and their families.

To work on this proposal, IAHPC formed a working group which included board members of IAHPC and external advisors from the field. The working group developed a plan of action and methodology which included a Delphi process among 425 health practitioners, primary care providers, and palliative care experts from 63 different countries around the globe, and a ranking survey with representatives from 45 international palliative care and pain relief organizations.

The IAHPC List of Essential Practices includes 23 practices with different levels of intervention under the following domains of care:

  • Physical Care
  • Psychological/Emotional/Spiritual Care
  • Care Planning and Coordination
  • Communication Issues.

The IAHPC List of Essential Practices in Palliative Care may help define appropriate primary palliative care and improve the quality of care delivered globally. IAHPC will focus future projects on the evaluation of their uptake and impact in the quality of lives of patients and their families.

A small significant step

It may seem such a small development, but we believe this is a matter of huge significance for the future.

House surgeons undergoing their one year mandatory rotating internship at the end of their medical education in Government Medical College, Trivandrum will hereafter have a week’s practical exposure to palliative care with Pallium India’s team.

On the 16th of April 2012, two young doctors, Dr. Minu and Dr. Meera became part of history by being the first to join the program. On that day they went out on home visits with Dr. Sunil Kumar and team.

Since then two or three house surgeons  take turns to involve themselves with palliative home visits for a week each.

We look forward to the ripple effect created by this generation of young doctors. 

Pallium India-USA at Sevathon 2012

Spread the word among family & friends!

Come and enjoy delicious Indian food, live music & vibrant dance performances!

Sunday 15th July 2012 – 7.30am onwards

Baylands Park, Sunnyvale, CA

5K/10K/Half-Marathon

Download PDF flyer & register here:

palliumindia.org/sevathon2012

  • Registration fees: $25 5K/10K, $40 Half Marathon
  • If you are unable to participate in the walk or run, you can support Pallium India-USA’s work by donating here: palliumindia.org/donate

We look forward to seeing you at Sevathon 2012!

Morphine Manifesto in Five Indian Languages!

In addition to the Ukranian and Russian translations, Dr Savita Butola (Delhi), Dr Dinesh Goswami (Guahati), Dr Mallika Tiruvadanan (Chennai), Ms Vineela  (Hyderabad) and Dr Geeta Joshi (Ahmedabad) have provided us with the translated Morphine Manifesto in FIVE Indian languages: Hindi, Assamese, Tamil, Telugu and Gujarati.

You can download the translated versions from The Morphine Manifesto page…

We’ve almost reached 3,000 signatures!

Please ask your friends to sign up too.

PARTING SHOT… this time from LIFE Before Death Series…

We have got so used to having a video from the “LIFE Before Death” series of short movies released one every week for the last one year.

They have not only been very informative to the public; but also made powerful advocacy material for the palliative care community. 

With the two short films released since the last issue of our newsletter, the series have come to the end. We are going to miss them.

Thank you, Mike Hill and team of Moonshine Movies and thank you, Lien foundation.

For more information and to view the entire series, visit the Life Before Death website…

 

Don’t forget to sign the Morphine Manifesto!

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