The Year that was…
2021 was a year we expected much from, especially emerging from the year that went before it. We had hoped this year would bring improved healthcare, restore our freedom to step out of our homes and be with people we love. We had hoped for a better year.
It was a year of losses. And unimaginable pain. The second wave and its aftermath took much from us – individually and collectively. Writing this customary end of year note has not been easy this time around.
But even small candles burn bright and cast light in the deepest darkness. We share with you some pin-pricks of light that we experienced, and hope that they serve to warm your hearts a little.
24 of our team members came down with COVID, but made a full recovery, for which we are incredibly grateful.
We turned 18 this year.
Transitioning into a new developmental stage, Pallium India went through its own rites of passage, and we worked to create better systems of management while enhancing our core imperative of patient and family-centric service.
We step into the new year more streamlined, with better clarity of vision and an expanded world view.
We accomplished several important milestones along the three tiers of our “Demonstrate, Educate, Facilitate” model.
Our home base at the Trivandrum Institute of Palliative Sciences (TIPS) serves to ‘Demonstrate’. Here, on the clinical front, we served 3678 patients and their families this year, with a total of 60,800 services provided.
With equity at the heart of our practice, we commenced a program to actively identify and support the most vulnerable in our reach. We assessed 4914 patients and identified 70 physically vulnerable, 62 socio-economically vulnerable and 48 severely psychologically vulnerable beneficiaries, and provided them all with appropriate support.
TIPS became a COVID vaccination centre in August, and since then has administered 1102 doses to patients, 558 of them being home-based.
We launched a telehealth helpline to provide palliative care support from a multidisciplinary team, and where required, link callers to a service close to them. The calls rose from 2 in January, to 320 in November.
We began a community physiotherapy program in mid-November. Our community physiotherapist has since then done 5 sessions a day and completed 79 sessions in the community.
Our research division currently has 20 projects in various stages of development.
COVID caused immense hardship to many of our beneficiaries in terms of loss of livelihood and income, escalating their needs for not just medical aid but also basics like food and education. With support from benevolent donors, we provided education support for 425 children in 2021 as compared with the 359 children in 2020.
Support from donors enabled us to stave off hunger in 121 families, who now receive dry ration food kits for the household from us. A significant increase from the 91 families we supported in 2020.
On the ‘Educate’ side, during another year when everything went virtual, we leveraged technology through Project ECHO (Extension for Community Healthcare Outcomes) to step up palliative care training at a time when it was sorely needed. We broke barriers to reach professionals, most of whom were new to palliative care.
The number of healthcare providers trained through ECHO programmes rose from 1778 in 2020 to 2135 in 2021. So far, we have trained 4208 providers, including 1332 COVID-treating professionals.
25 new mentors from 14 states joined our faculty pool to provide training and mentorship, and 17 hands-on training partnerships were initiated across 12 states.
We collaborated with the National Health Services Resources Centre (NHSRC) of the Ministry of Health and Family Welfare with the aim of capacitating frontline healthcare providers (Doctors, Nurses, ASHAs, ANMs and Community Health Officers) in palliative care, through a downward cascade model of trainings at the national and state levels, which will be taken to the district level. We also created 56 videos to be used nationwide for training purposes in this regard.
Our much cherished collaborative initiative with the Public Health Foundation of India (PHFI), supported by senior palliative care experts from around the country, trained 30 senior doctors from government and private sectors from all regions in palliative care.
Through the ‘Facilitate’ function, we updated our existing palliative care directory to provide users with available services across the country, specifically signposting to where morphine and other essential opioids for pain relief might be found.
It was a privilege to work with champions in 11 different states to initiate 22 new palliative care centres this past year, and with the governments of Sikkim, J&K and Arunachal Pradesh to improve accessibility to opioid medication. We worked with drug controllers and medical institutes to conduct workshops in 4 other states. We made contact with 21 NHMs to collaborate for training and development of palliative care in their states and initiated 15 formal MOUs.
Yet another legislative action for amendment of the Narcotic Drugs & Psychotropic Substances (NDPS) Act was tabled in the Parliament of India. We worked with palliative care champions to advocate for the principle of balance – to ensure that the Government acknowledged its dual obligation to ensure access to opioids for medical use while controlling inappropriate use.
Members of Parliament, Mr N K Premachandran and Mr. Suresh Gopi made robust representations highlighting the concerns of the palliative care community, which received acknowledgment from the Finance Minister Ms Nirmala Sitharaman. This was the first time that members of Parliament spoke so forcefully and clearly about the principle of balance and the need to alleviate suffering.
Our emotional support helpline – Sukh Dukh, initiated in 2020 as a response to the grief and emotional distress brought on by COVID, continues to operate in 8 languages, receiving calls on a daily basis.
We had the honour of being part of Saath Saath, India’s first integrated palliative care helpline spearheaded by Cipla Foundation, along with 10 leading palliative care providers in the country.
On the international front, we were part of the team of global experts that created the WHO technical report on 18 indicators to assess palliative care delivery globally. In addition, we represented the civil society perspective at the Vienna NGO Committee (VNGOC) and United Nations Office on Drug and Crime (UNODC) event that launched the 2021 World Drug Report. We drew attention to the inequity in access to pain relief in the South East Asia region and highlight the dual obligation of making essential controlled medicines accessible for pain, while preventing misuse.
We participated in the WHO Cervical Cancer Roundtable, where we highlighted the social suffering of women afflicted by this disease. Additionally, we were able to bring stakeholders together from across India to create a video on cervical cancer prevention, that was showcased at the WHO Cervical Cancer Elimination Day of Action.
Through our association with the Dartmouth University, Memorial Sloan Kettering Hospital and the Association for Palliative Medicine (Juniors) of Great Britain and Ireland we engaged with professionals and medical students across the world, creating vital conversations around lack of access to palliative care in the Global South, and the downstream impact of western pharmaceutical and healthcare practices on Low and middle Income Countries.
As this BIG year comes to a close, we would like to thank each collaborator, co-creator and champion who gave form to the vision for a country without needless pain and suffering.
We offer our heartfelt gratitude to our donors – individuals and entities, who powered our service.
We extend our deepest thanks to all our supporters and well-wishers, whose goodwill, encouragement and love saw us through.
In the year to come, we wish you good health, safety and wellbeing.
We hope that you find more reasons to smile than to be cynical or sad.
And we hope that light always finds you, no matter how deep the darkness.
From all of us at Pallium India, to all of you and yours – Be well.
Our very best wishes for 2022.
In Memoriam:
In 2021, we lost one of pillars of strength – Shri Keshav Desiraju. He was our guide, mentor, beloved friend and Trustee.
We would particularly like to pay homage to Sarojini Amma, Sreekumary, Shanti Singh, Lalitha, Surendran, Vijayan, Vasudevan Pillai and Johnson – close relatives of our dear team members.
Each of them will be sorely missed.
(Prepared by Smriti Rana, with inputs from the entire team.)
Informative ,well documented and Presented Smrithi Rana Madam and Team