Published on: December 1, 2020

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Dear Friend,

December 3, 2020 is International Day of Persons with Disabilities.

This year’s theme is “Not all Disabilities are Visible” – to spread awareness and understanding of disabilities that are not immediately apparent, such as mental illness, chronic pain or fatigue, sight or hearing impairments, diabetes, brain injuries, neurological disorders, learning differences and cognitive dysfunctions, among others. 

Pallium India is organizing a social media campaign to create awareness on “What is the right language and behaviour while communicating with people with disabilities?” and to share views of people with disabilities on topics like accessibility, employability, education etc.

We shall also do an online get together of patients and people with disabilities. Contact: 9072101197

Sometimes it’s good and other times it’s really bad.

“One train trip stuck with me. It upset me so much that it’s only now, years later, I can write about it. My white cane was folded up on my lap. I was engrossed in the latest true crime podcast and I felt someone tapping my shoulder.” ABC reporter Nas Campanella writes about a shocking interaction on a Sydney train.

Follow us on Social Media for news, views and updates – as & when they happen:

Decorate your walls and support children’s education!

Buy one picture today please. Your contribution will ensure that at least one child does not drop out of school because of financial burden arising from his/her parent’s treatment.

The proceeds from paintings & photographs sold at Manjuthulli Art Gallery organised by Pallium India go towards the education of children from disease-ravaged families. 

Browse our gallery and choose a picture you like! Here are some places to start:

Photographs: https://artspaces.kunstmatrix.com/en/exhibition/2710349/catalog

Paintings: https://artspaces.kunstmatrix.com/en/exhibition/2712761/catalog

Sketches: https://artspaces.kunstmatrix.com/en/exhibition/2657274/catalog

Delivered free of cost to anywhere in India.

Queries? Contact: 9495124409 / 9746745502 / racheljasper87@gmail.com

Visit Manjuthulli 3D Gallery

Redefining Palliative Care

The current definition of palliative care by the World Health Organisation is 18 years old.

There have been calls from several quarters for revising it. 

Dr Lukas Radbruch and colleagues from all over the world (we are glad that Pallium India was part of the process) came together to create a new definition of palliative care which is:

Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC.

It is understood that the World Health Organisation has not accepted this revision. However these discussions and this work are certainly steps in the direct direction.

Read more

WHO Roundtable on Integration of Palliative Care:

At the Roundtable of palliative care civil society representatives with the WHO on “Integration of Palliative Care into National COVID Response Plans per World Health Assembly 73/1” on 25 November 2020, the Director General of WHO Dr Tedros Adhanom Ghebreyesus made a firm commitment towards integration of palliative care into healthcare.

He said, “I met inspiring professionals who the WHO is proud to work with, to improve access to palliative care for people during COVID-19. We will keep striving to help people living with pain attain the quality care they deserve and raise their needs to the highest political levels.”  

Read Dr Tedros’ complete speech here: https://www.who.int/director-general/speeches/detail/who-director-general-s-dialogue-with-csos-integration-of-palliative-care-into-national-covid-response-plans

(Also present at the event were Lukas Radbruch, Prof Julia Downing, Harmala Gupta, Lucy Watts, Dr Stephen Connor, Dr Ednin Hamzah, Dr Dingle Spence and Rose Kiwanuka)

Lucy Watts MBE at the WHO event:

Of the several dignitaries at the WHO Round Table for Palliative Care Civil Society Organizations, next to the WHO director-general Dr Tedros Adhanom Ghebreyesus, the one person whose presence was most felt was that of Lucy Watts MBE, a person living with a serious illness and with serious disability.

And ahead of the “International Day of People Living With Disabilities”, which falls on the 3rd of December, Lucy’s voice is particularly important.

Pallium India’s monthly newsletter is sent via email on the first of every month. Subscribe to get palliativecare news, updates, articles and events from around the world, delivered to your inbox.

Click here to subscribe: https://www.freelists.org/list/palliumindia

Sometimes, talking about it helps. Call us.

The current pandemic has brought with it a cloud of grief, and many of us are not equipped with the tools to deal with it.

If you have lost a loved one, if you are finding it hard to cope, if you are feeling sad, angry or lonely, do call us.

+91 8707447046

Do share this with your friends who might need emotional support.

Our new batch for ‘Aarohan II’ commenced on November 28. We saw participation from over 50 people belonging to various parts of India and abroad, enthusiastically participating in the sessions despite the time difference! We were so humbled to see everyone’s passion!

 Aarohan was conceived in 2019 to facilitate and empower the beneficiaries of Palliative Care. Last year, with the support of the World Hospice Palliative Care Alliance (WHPCA) and Project ECHO, we started this programme with a limited number of participants to facilitate interaction. 

Aarohan II will have 20 sessions, one per week. We look forward to active discussions on palliative care and how each one of us can empower the community to ensure palliative care for all.

Online Foundation Course in Palliative Medicine for doctors (FCPM)

Objective:
To train health care professionals in pain management and palliative care.

Eligibility:
M.B.B.S or B.D.S with permanent registration with medical council.

Classes Scheduled: 19 Sessions (2 sessions per week)
Start Date: 15 December 2020 (Tuesday)
End Date: 2 March 2021 (Tuesday)
Days of the week: Tuesdays and Thursdays
Class Timing: 3:00 PM – 4:30 PM
Where: ZOOM Online

Click here to read more & register for the course

Events

Check out all upcoming events: https://palliumindia.org/events

For more information on any of these, write to: info@palliumindia.org

WHO PEN disease interventions for primary health care

Please see an important document from World Health Organization (WHO) titled “WHO package of essential noncommunicable (PEN) disease interventions for primary health care“.

For anyone new to palliative care who is reading it, we want to add a word of clarification. In section 2.7, ‘Practice Points for Palliative Care‘, we hope the statement “Provide care in the last weeks/days of life” does not mislead anyone that palliative is confined to the last weeks or days of life.

It only means that towards the end of life, palliative care becomes particularly important. It is definitely not to say that palliative care is only for end of life. In fact, the WHO definition of 2002 adds a bulleted footnote to it, that palliative care must start at the time of diagnosis. Moreover, the World Health Assembly resolution of 2014 has emphasised that palliative care should be given across the continuum of care: that is, from the beginning of the health issue to the end.

Dr Sanjeev Arora named the 2021 Laureate for the Brock Prize in Education Innovation

One person – Dr Sanjeev Arora

One idea – Move knowledge, not patients.

One innovation – Combination of education, technology and efficient management.

And what a change!

44 countries. 423 hubs, 920 programs.

920, did you notice? And how many people would be reached by those trained in the 920 programs? How many patients would be benefited! Millions!

No wonder awards seek him out!

Congratulations, Dr Sanjeev Arora on being named the 2021 Brock Prize Laureate. Thank you for holding our hands and walking with us. We are proud to be one among the 423 and a few among the 920.

A study on barriers to early palliative care referrals

How do we achieve early referrals to palliative care so as to improve quality of life?

A systematic review by Drs Naveen Salins, Arunangshu Ghoshal, Sean Hughes and Nancy Preston, titled How views of oncologists and haematologists impacts palliative care referral: a systematic review shows that some oncologists:

  • viewed palliative care referral as a therapeutic failure,
  • felt referral would mean abandonment to patients,
  • were worried about rupture of therapeutic alliance and
  • equated palliative care to loss of hope.

Oncologists felt that the following strategies like could facilitate palliative care referral:

  • Developing an integrated model of care,
  • changing the name of palliative care and
  • augmenting palliative care resources.

Thank you Dr Naveen Salins and team. It is true that the reviewed studies were all from high income countries, but they findings could well be equally or more relevant to low- and low-middle-income countries. Now that the barriers are rather clearly defined, that should guide us to a strategy to overcome that strategy. And perhaps an Indian study would be welcome?

Pallicovid ECHO: testimonials

PalliCovid ECHO virtual sessions train health workers in Palliative Care management in the context of Covid-19. Click on the above image to see the number of participants from different countries and different Indian states, as on December 1, 2020. 

Click here to read testimonials and know more about Pallicovid ECHO

View Resources for Healthcare providers caring for Covid 19 patients

Donate to Pallium India: https://palliumindia.org/donate

A social experiment on World Toilet Day

One in every four households in India does not have a toilet, putting people at increased risk of exposure to infectious diseases. When nondisabled people find it difficult to access toilets, what happens to people with disability who constitute a sizable 2.2% of the country’s population?

Universal access to public spaces remains a challenge for people who suffer from physical, sensorial, and intellectual disability. Toilets are one of the most important basic amenities that a public space should have on offer for people visiting it.

On this year’s World Toilet Day, 19th November, Pallium India joined hands with ‘Toilet Tales‘ of ‘Recyclebin‘ and ‘Sahridaya‘ to conduct a social experiment to raise public awareness about access to disabled-friendly restrooms.

Conducted at four locations in Thiruvananthapuram, members of the public were offered wheelchairs by the organisers and encouraged to enter the toilet with it. Participants expressed their solidarity to the cause of access to disabled-friendly restrooms and also expressed that the activity gave them an opportunity to experience first-hand the difficulties faced by wheelchair users while climbing ramp, opening doors and using hand rail.

This social experiment throws light on the fact that we have a long way to go to make public spaces universally accessible. Society must realise that universal accessibility is a right and not an act of charity.

Unity in diversity in 84% of the world:

There is one thing that is common to 84% of the global population – the low income and the middle income countries. That is the burden of unrelieved serious health-related suffering.

We are grateful to the Royal College of Physicians of Great Britain and Ireland for discussing the palliative care needs, barriers and solutions on 12 November 2020, chaired by Lain Lawrie. As it turned out, the core issues seem to be the same between India, Jamaica and Lebanon. We talked about community engagement as one major factor in effecting some change.

Register at this link to watch the recording of the program.

Video of the Month

About Palliative Care – Indian Sign Language

Here’s a video explaining what palliative care is – in sign language (with English voice-over). Vinayachandran B. S. is a certified Indian Sign Language Interpreter, who has signed for a course on fundamentals of Covid-19 at OpenWHO page.

Click to view the video: https://www.youtube.com/watch?v=dOgpxJACK7c

Subscribe to Pallium India’s youtube channel for more videos.

Palliative Care During Cancer Treatment

The Global Atlas of Palliative Care (2nd edition) was launched on 10th October during World Hospice and Palliative Care Day.

Failing the Elderly: Public Health Systems Need Revamping, Experts Say

Just a fraction of an estimated 5 million Indians with dementia and Alzheimer’s are diagnosed. Do we need a new policy to ensure their well-being?

Pressure on critical care facilities in covid-19 patients in India

PARTING SHOT

Locked up much before lockdown – Nincy Mariam Mondly

Being home-bound meant nothing new to persons with disabilities because our disabilities had locked us down much before Covid.

The difference is in only the way it gets labelled in our society: while the pandemic forced the common man into a ‘lockdown’, disabilities meant being bed-bound or wheelchair-bound, or in any case ‘home-bound’, more for the society than the individual. Even when the world would take care of replacing derogatory terms with ‘specially abled’ or ‘differently abled’, they would accept being ‘home-bound’ as natural and okay for persons with disabilities.

Read the complete article by Nincy

Read previous issues of our newsletter

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