community care for the living dead

There was this lady in my neighbourhood when I was growing up. Ever since I remember her, she was frail with wrinkles and white hair. She lived alone and one day I heard she was no more. She had been really unwell for a while and with no one to take care of her and tired of her increased stays at the hospital, and knowing she didn’t have much to live anyway, she committed suicide. I wish she had known about the Palliative Care network in Kerala.

Most people who are incurably ill need a little more than physical and medical support alone. Psycho-social and spiritual care is equally important, which is very difficult to materialize through institutionalized care. The physical complexities of progressive and life threatening disease, coupled with attendant emotional and psychological consequences, demand careful coordination between primary, secondary, and tertiary care. The community approach is the only realistic model for achieving significant coverage and continuity of services for terminally ill. This is a realistic option in most communities where inter personal relationships have not yet fully died out. And the Palliative care movement in Calicut, the teeming volunteers and the impact it has been creating over two decades shows that it is not just a pipe dream.

Building social capital for supporting cancer patients

October is the Breast Cancer awareness month.

This year my friends are raising awareness about Breast Cancer on Social Media networks, especially Facebook, through a meme that has to do with figuring out the best place you keep your bag!!! For example-"I like it on the couch", "I like it on the kitchen counter", "I like it on the dresser"- double entendre, no doubt, but catches attention of our male ilk and well, that’s the idea!! :)

I hope women discover breast cancer at an early stage as it greatly increases their chance of survival. But as I found in my mum’s case, not everyone gets lucky. Many of them succumb to the ferocity of the disease. Over 90% of all patients with cancer spend some time in hospital and in their stages last of life, more than 70% happen to be in a hospital or in a hospice. Most of them find it frightfully expensive to afford good quality hospital care. I am sure many who can afford would like to be with their near and dear ones and desire to die at a location that is a little more intimate and personal than a hospital, however wonderful it may be. But it’s not always possible given the difficult symptoms and lack of practical help at home. Patients who are frightened, insecure, or lack confidence in their support network or even their loved ones who only wish the best for them are more likely to seek urgent admission to a hospital or hospice, even when death is imminent.

Patients with advanced diseases require continuous care and attention for the rest of their lives. They are also in need of regular social, psychological and spiritual support in addition to the medical and nursing care, that is readily accessible and available as close to home as possible. There is enough social capital available to build a ‘safety net' in the community around these patients. And that really is the rationale of the Palliative care movemement and the aim of the Concern without Borders campaign. Join the campaign to determine how you can make a difference.

When volunteering becomes you!

I was at lunch with a friend the other day and we had a very animated discussion about the work that the Pain and Palliative Care Society does. I was telling him about the 30, 000 volunteers, nearly 50% of whom are trained and skilled who have changed the way people die in in Kerala. He had trouble understanding the demography of the volunteers? Were they people who already had jobs? Were they students? Bored housewives perhaps? What makes them tick and what motivates them to be with the infirm and dying day in and day out? Surely, not all of them get a special calling to be society’s messiahs! Good questions, all. I then told him the story of Ahmed Koya.
Ahmed Koya is an auto driver in Calicut. Like all auto-drivers, he spends the whole day speeding around the dusty lanes of the city transporting people from one end to the other. He also, like most auto-drivers in India, works overtime almost on a daily basis to make ends meet and give his family a decent living. Ahmed is also an active volunteer for the Palliative care movement in Calicut city.
He likes to talk to his passengers he says. “Sir, there is a patient near by my house who is paraplegic and bedridden. Could you please help him to buy a Wheelchair? Is it possible for you to sponsor a child in that family to meet his educational expenses?” Many travellers in his auto may have heard this request from him several times. Ahmed Koya never hesitates to talk about palliative care and the need of the suffering family he cares for with the passengers he transports in his auto. When someone expresses his or her willingness to help, he links them directly to the patient, adding another link to the chain.
His ability to reach out to his passengers provides many of his patients who he supports money to buy medicines, medical equipment and wheelchairs. “Patients don’t only need medicines and treatment; they need several other things also. For example, while undergoing treatment in the hospital and suffering the trauma, pain- they need a quilt; not the ordinary quilt, but the quilt of love- this is what we like to provide to them” he says with compassion. “I am an ordinary auto driver and don’t have money to spend, but I have an intent to help those in my community who need help”, he continues.
By the time we were through with lunch, I think I got another volunteer for this wonderful movement! :)

Invite to World Hospice and Palliative Care Day celebrations in Kozhikode

Pain and Palliative Care Society, Medical College, Kozhikode
Palliative Care Society, Annie Hall road, Kozhikode
Indian Association of Palliative Care
Bank Men's club Kozhikode
Concern Without Borders and The Blue Yonder

invites you to the World day celebrations
at the Nalanda Auditorium, Kozhikode
on 9th Oct 2010 at 5 pm IST

Dr. P. B Salim IAS, District collector will be the Chief Guest. Following the public meeting, there will be a musical programme by Musician's Welfare Association, Kozhikode.

Read the invite here


The event will see the launch of 'Tracks We Leave', a new initiative from Pain and Palliative Care Society to strengthen its grassroots network and find sustainable funding solutions to support palliative care for the city of Kozhikode in Kerala. More on 'Tracks We Leave' in our next update.

Reaching out to the world to learn and share

Concern Without Borders is an initiative that grew out of the experience of the Pain and Palliative Care Society in leveraging volunteers to create huge social impact in healthcare.

What started in 1993 as a pain clinic in a small room in Kozhikode Medical College in Kerala, has now grown into a mass movement with almost 30,000 volunteers trained and skilled in caring for the terminally ill. Care given through this network of volunteers was recently termed by Economist Intelligence Unit as a 'beacon of hope' for the world. Around 300 such self-sustaining palliative centres are functional today in the state of Kerala, accounting for nearly two-third of such centres in the whole of India. The Society now aims of expanding its reach and the network of volunteers to replicate this model in others parts of India and the world, and strengthen its existing operations.

Concern Without Borders is an attempt to learn from this unique experience and apply it for programmes beyond palliative care. We believe that the real empowerment of people at the grass-root level can be the catalyst that can bring huge social change. We also believe that there are many out there who have it in them to contribute to build and nurture such volunteering networks across the world, and demonstrate Concern without Borders.

This blog and other social media network we will be using hereafter is our attempt to reach out to the world and share what we have been doing in the last fifteen years and to learn from similar initiative from around the world.