July 2019 Newsletter
Are words like these familiar to you? Do you know somebody who seems to live a near-normal life, but is always complaining of pain, and irritating everyone around them? Somebody who is short-tempered and picks up a quarrel easily?
People with cancer pain get some sympathy. People with long-term pain (chronic pain) are shunned.
But their suffering is real, and often, horrendous, because it is for a life time. The source of the pain may not be very clear; it could be from the low back or it could be generally from muscles and joints but over time, the inexorable pain becomes all-consuming. Moreover, since the pain cannot be seen on an X-ray or an MRI, it could be ignored or even laughed at. “It’s all in your head” or “Just stop thinking about it” are common insensitive reactions to their pain.
On 25th May, 2019, thanks to the advocacy by a task force of the International Association for Study of Pain (IASP), chaired by Prof Rolf-Detlef Treede and co-chaired by Winfried Rief, the World Health Organization has approved the new version of International Classification of Diseases (ICD-11), which includes chronic pain for the first time.
What does it matter?
Well, it does matter because now chronic pain is more likely to be recognised as a health issue and to get attention in research and medical teaching.
Thank you, Ms Katherine Pettus of IAHPC, for informing us of the partnership entered upon between the European Commission (EC) and the World Health Organization (WHO) to upscale Universal Health Coverage in 66 different countries. India is one among the 66 countries.
Read the press releases from EU and WHO:
The EU pursues a rights-based approach to health, by supporting countries to design policies that maximised health benefits through the equitable treatment of all citizens, and it will be optimal if those of you who advocate in the countries where the partnership is being implemented, could ensure that palliative care is include in the deliberations.
More about the partnership and countries here: https://uhcpartnership.net/about/
Here is an appeal on behalf of three teenagers who know what suffering is. These three girls have seen how people dear to them went through agonies with major health issues, how their families were destroyed financially. Their experience with disease and suffering made them determined to become doctors.
But the entrance examinations for medical admission make no allowance for attitude, commitment or passion. Only facts and figures count. In today’s rat race, they do not stand a chance unless they go through coaching classes which are expensive by our standards.
The requirement for the year for the three would be ₹3.2 lakhs (approximately $ 4600) (₹75,000+₹75,000+ ₹1.7 lakhs, the difference due to the location of the courses).
Would three people come forward, to sponsor one girl each?
Please write to us, we shall give you the girls’s stories: firstname.lastname@example.org
“Thanks for making me part of this empowering project. After attending yesterdays session, I am more convinced that together we can achieve”- Dr. Jagruti
These are some of the reactions from the participants of our new online training program on palliative care advocacy meant for direct beneficiaries- survivors and family members.
We must confess that we are a bit excited about this program. Its potential, we truly feel, is enormous. These are voices never heard in the ordinary course of events. The impact of their empowerment could be tremendous.
We started the programme on 22 June 2019, with 18 participants. Many more wanted to join; but we had to limit the number of participants so as to facilitate interaction.
A group of volunteers, including palliative care activists and artists, is organizing an exhibition and sale of paintings and craft products. This 3-day event, Manjuthulli, will take place from July 4, 2019 to July 6, 2016 at Museum Auditorium, Trivandrum. The program will be inaugurated by Cartoonist Shri P. V. Krishnan at 10 a.m. on 4th July.
Part of the funds raised from this program will be used to support Pallium India’s patient care activities.
We request your presence and support for this event. Your contributions will go a long way in improving the life of people with chronic and life-limiting diseases.
Dates: July 4 to July 6, 2019
Venue: Museum Auditorium, Trivandrum
Inauguration: 10 a.m., 4th July, 2019
Contact: email@example.com / (0)9746745502, (0) 9496284894
Read what The Hindu Metro Plus writes about Manjuthulli: Art to heal
If you are unable to attend the event but wish to support us, please Donate.
Gilly Burn, Founder Director, Cancer Relief India, and a dear friend of palliative care in India, is organizing a study/teaching tour beginning in February 2020. The tour is planned to follow on from the IAPCON2020, Guwahati.
The Serendipity Palliative Care Study Tour enables you to make a difference by giving your time and expertise to teaching palliative care as well as being inspired to share and implement what you learn in your workplace.
The tour begins on 17th February and ends on 3rd March.
This year’s World Hospice and Palliative Care Day is on October 12, 2019.
The theme for this year’s palliative care day is: Palliative Care: it’s “My Care, My Right”.
The theme My Care, My Right aims to communicate that palliative care can be demanded by the public – and that, together, every person impacted by a life limiting illness can influence their policy makers to prioritize palliative care financing under Universal Health Coverage.
This year’s WHPCD 2019 comes on the heels of the UN High Level Meeting on Universal Health Coverage (UHC) on 23 September. Therefore, a key action for the campaign will be to call on governments to listen to people who need or access palliative care and support the inclusion of the essential package of palliative care in all national Universal Health Coverage (UHC) schemes.
To know more about World Palliative Care Day, please visit: http://thewhpca.org/about
A chronic lack of opioid drugs leaves millions of people throughout the developing world to live and die in unrelenting, excruciating pain. It is a particularly bitter irony in India, which historically had the world’s biggest legal opium poppy industry. The Lancet journal has dubbed the lack of access even to cheap pain killers such as morphine a “medical, public health, and moral failing”.
Where will the drugs come from? Megan O’Brien of the American Cancer Society explains a cheap solution they are advocating in Sub-Saharan Africa. Kunal Saxena, managing director of pharma company Rusan, tells of his hopes for the privatisation and expansion of India’s opium business. And Justin Rowlatt reports from Kerala.
(Picture: Benedict Alexander, a patient at the Pallium India clinic, with his wife Bindu; Credit: BBC)
Listen to the podcast now: https://www.bbc.co.uk/programmes/w3cswgkf
27th International Conference on Palliative Care (IAPCON 2020, Guwahati), is scheduled from Feb 14th to 16th, 2020 with pre-conference workshops on Feb 13th, 2020 at Guwahati Medical College, Guwahati.
The theme of the Conference is “Entrust, Engage & Empower”.
Abstract submission is now live. For guidelines, please visit: http://iapcon2020.com/abstract_submission.html
For more information, please visit the conference website: http://iapcon2020.com/index.html
Following the worst flood in a century that ravaged Kerala in August 2018, killing 500 people and displacing more than a million, two thoughts remain paramount. One was the intensity of suffering. The other, intense pride on how the common man reacted, tens of thousands working shoulder to shoulder with the government machinery, fire forces and armed forces. The people of Kerala demonstrated true heroism.
Looking back, for us in palliative care, the predominant thought was the magnitude of suffering of those with palliative care needs. When people were evacuated, many lost medicines and physical aids which were essential for their very existence. For the differently-abled, including the elderly, rescue was often delayed and even after rescue, their suffering was intense. Let us certainly hope that a disaster of that magnitude does not happen again. However, even if humanitarian crises of smaller magnitude happen, the palliative care network has to be ready. People with palliative care needs do require special services.
Pallium India and Indian Association of Palliative Care (Kerala) joined hands with Kerala State Disaster Management Authority (KSDMA) to conduct a one-day consultation on “Addressing the needs of the Elderly and People under Palliative Care in Disaster Related Emergencies,” involving as many palliative care organizations and NGOs that work in the field of elderly care in Kerala as possible. The expected participation was 50; but 85 people registered.
We now are ready to create an action plan and to conduct training programs. Even in small towns or villages, a major road traffic accident or a similar calamity would find us better prepared, we hope. We thank Mr Sekhar Kuriakose and team at KSDMA for allowing us to work with them.
A press release from the Healthy India Alliance (HIA) calls for multi-sectoral action for the increasing alcohol consumption in India. The growth in per capita consumption is a global phenomenon, but the increase in India is way out of proportion to the rest of the world. Understandably, the negative impact is much more in low and low-middle income countries than in the Global North.
HIA (of which Pallium India is a member) calls for the following control measures:
- Comprehensive ban on all forms of alcohol advertising, promotion and sponsorship, including surrogate advertising of non-alcoholic products and online promotions, particularly on social media and depiction in movies and online streaming content;
- A uniform minimum legal drinking age (25 years) to check drinking among adolescents and young adults, with a robust strategy to check age at Points of Sale;
- Appropriate taxation across all forms of alcohol;
- Stringent enforcement of drink driving laws and regulations;
- Denormalisation of alcohol use as a social practice, through comprehensive and audience-specific health promotion campaigns
Natalia Arias on behalf of “ATLANTES Research Program: Human Dignity, Advanced Illness and Palliative Care” informs us of the new Brief Manual of Health Indicators for the Monitoring of Global Palliative Care.
Indeed, no such manual of indicators can be perfect. For example, you can check whether the country has a palliative care policy. It would not be easy to find out the level of implementation. One can be glad that a budget allocation has been made, but what if most of the available resources are wasted because of poor accountability or because of poor knowledge or skill base?
However, this is indeed a giant step forward in measuring access to palliative care. Thank you, all at ATLANTES.
See the excellent article by Viji Sundaram in India-West: As Death Approaches, Older Indian Americans Unprepared for the End
In India, we have a paradoxical situation wherein the poor die better; in their homes most of the time, surrounded by family, with a few drops of water when the throat is parched, and a loving hand to hold. The rich, on the other hand, suffer alone, imprisoned in intensive care units, a painful tube in every orifice, arms and legs bound.
In the USA, such intensive suffering is almost certain unless one has prepared an advanced directive. A legal document has to be prepared beforehand if one is not to be on ‘full-code’ – that is, if someone is not to jump on their chest and squeeze it some hundred times a minute, as hard as they can, often till ribs crack. And then, following the resuscitation, the elderly person dying a natural death finds himself half-dead, hooked to a machine. Again, alone, in agonising suffering.
What a paradox that you have to write a legally binding document and have it witnessed, if you are to protect yourself against an irrational medical system!
When will the modern, brave new world of health care recognise that death is the inevitable consequence of life, and realise that the most important thing for that person could be medicines for physical comfort, yes, but also a loving hand to hold?
Thank you, Ms Viji Sundaram, for this eye-opener for many.
Video of the Month:
Watch the video here: https://youtu.be/SkXlJ9EXZVo
The Objective of the Online Foundation Course in Palliative Medicine is to train healthcare professionals in pain management and palliative care.
To ensure adequate interaction during sessions, we will have to limit the number of participants at each course on a first-come, first-served basis. So register quickly!
M.B.B.S or B.D.S with permanent registration with medical council.
Classes Scheduled: 18 Sessions
Start Date: 04 July 2019
End Date: 31 Oct 2019
Day of the week: Thursdays
Class Timing: 3:00 PM – 4:30 PM
How to apply
Contact us at +91-6282902450 or firstname.lastname@example.org
This course is ideal for healthcare providers and volunteers working in healthcare, and patients and families living with terminal illnesses. No prior experience with palliative medicine is necessary.
Enrollment closes September 1st, 2019.
End date of the course: October 14th 2019
Please see the brochure.
For more information, visit: https://lagunita.stanford.edu/courses/course-v1:Medicine+PCA+India_SelfPaced/about
Dr Legha served as an Attending Oncologist in the Medical Oncology department of M D Anderson Cancer Centre for 20 years. He was the lead investigator in several phase-1 and phase-2 studies with new Anticancer drugs such as Paclitaxel and Nab-Paclitaxel and also led in the development of new treatments for Advanced Breast Cancer and Melanoma. He is the founder of the Indo-American Cancer Association (IACA) which brings together Oncologists of Indian Origin at the annual ASCO meetings and provides an opportunity for Traveling Fellowships to the oncologists practicing in India. During the past 15 years, over 125 cancer specialists from India have benefited from this ongoing program which is largely supported by the contributions of the US-based Indian Oncologists.
Congratulations, Dr Legha and thank you for everything you have done for cancer care and palliative care in India.
Compassionate Community for Care – Campaign
Please join us in making this world a better place!
Pallium India invites communities – residents’ associations, welfare groups, pensioners’ associations, senior citizens’ clubs, youth clubs etc. to join us in our
“Campaign on Compassionate Communities for care”
– To foster a future generation that is socially responsible and sensitive to the needs of the destitute and the weak
– To create community awareness regarding palliative care and to mobilize community support
– To ensure continuum of support to the victims of needless and severe health related suffering.
– To create a network and generate a platform for people to come together and work towards this cause
– and more…
Babu Abraham, Manager – Advocacy: +91-9746745502 / email@example.com
The money you give will pay for essential free medicines for the poor, for their travel to the clinic or for schooling of their children, or other forms of care.
Please give whatever you can. No amount is too small.
To donate, please visit:
Write to us: firstname.lastname@example.org
Call us: +91-9746745497 (India) / +1-718-273-8597 (USA)
All donations to Pallium India are tax deductible.
- Jul 4, 5, 6, 2019: “Manjuthulli” – an exhibition and sale to help Pallium India’s patients. Venue: Museum Auditorium, Trivandrum. Contact: Lalitha S: 9496284894, Babu Abraham: 9746745502
- Jul 4, 2019: Online Foundation Course in Palliative Medicine (for doctors). Register: https://palliumindia.org/2019/05/upcoming-online-foundation-course-in-palliative-medicine-for-doctors/ Contact +91-6282902450 or email@example.com
- Jul 26-28, 2019: Volunteer Training Program in Trivandrum. Contact: firstname.lastname@example.org / 8589998760.
- Aug 7, 2019: Foundation course in Palliative Medicine for Doctors, in Trivandrum, 10 days. Register: https://palliumindia.org/courses/foundation/ Contact: +91-8589998760 / email@example.com
- Sep 2, 2019: Certificate Course in Pain and Palliative Medicine (for doctors) and Certificate Course in Palliative Nursing (for nurses) CCPPM: https://palliumindia.org/courses/ccppm/ CCPN: https://palliumindia.org/courses/ccpn/ Contact: +91 8589998760 / firstname.lastname@example.org
Have Queries? Write to: email@example.com.
Find out more about our courses at: http://palliumindia.org/courses/
Pallium India’s Facebook page has over 9000 likes.
We regularly post articles related to palliative care from around the world.
We’re also on Twitter: @palliumindia
Contact Pallium India’s Information Centre (9 am to 5 p.m., except on Sundays and National holidays) for information related to palliative care and about establishments where such facilities are available in India.
or E-mail: firstname.lastname@example.org
Address: Pallium India Trust, VP 80/13, Golden Hills, Venkode P.O., Vattappara, Thiruvananthapuram 695028
For more details, please visit: http://palliumindia.org/info-centre/
Cancer leaders from 10 South-East Asian nations got together at Delhi on the 25th and 26th of June 2019. The opening address was not given by a minister. Nor by the WHO Regional Director for South East Asia, Ms Poonam Khetrapal Singh.
Ms Ritu Bhalla gave the opening address. And held everyone spell-bound.
Who is Ritu Bhalla?
Ritu is a cancer survivor and leader of KidsCan Konnect (KCK), a teenage and young adult survivors group of CanKids…KidsCan.
Ritu got cancer twice. The first at the age of 4 and the second when she was 11.
Her talk included the following questions:
- Why was it that it took my doctors 8 months to diagnose my second cancer?
- Why did my friend Vikas have to go to 22 hospitals before he could get a diagnosis?
- Why did a friend of mine have to undergo a bone marrow puncture with no measures to reduce the pain? (For those who do not know it, a bone marrow puncture involves a large needle pushed through a bone – right into it, a very very painful procedure).
- Why did my friend Neetu with chronic myeloid leukemia have to die in pain, with no access to the right pain-relieving medicines?
Most of the suffering that Ritu talked about was avoidable. It was not a question of cost. Relief could have been given at low cost.
“I can help. Please permit me to help you”, Ritu pleaded, raising a voice that could come from a million people getting cancer in India every year.
The Astana declaration of 2018 asked member countries to include communities in designing and controlling health systems. Will we listen and respond to Ritu’s plea?
Congratulations WHO SEARO for making Ritu’s voice heard. And congratulations, Poonam Bagai and CanKids…KidsCan (a National Society for Change for Childhood Cancer in India) for empowering survivors to grow to their potential.
posted by pallium india in Newsletter