It started small, like-minded people started something to do in palliative care and then they started finding people in and around the community. It was mainly based on a community based palliative care. So they started finding volunteers who can actually identify the suffering people in the community and they can bring it up to us so we will see how we can deliver the care to them. So it started with this very basic concept and now we have an educational department which is a training department which is called the Trivandrum Institute of Palliative Sciences which is a WHO collaborating centre for training and policy on access to pain relief.
It’s national work we are doing right at the moment along with the clinical work happening locally inside Trivandrum. We do put out models of how you can deliver community based palliative care; we put up small models where you can make satellite centres, make people work from the community linked to specialist palliative care services. So that is an example for people who are coming from where there is no palliative care, they can come with us, get trained for six weeks because it’s a WHO approved centre for training. So we run a six week course every alternate month so they can stay there, they can do hands-on training, they can go to the community, talk to the people how we work. They can be with the people dying, they can experience what they are maybe in future going through. So it’s a kind of hands-on training happening and the main part of our activity is advocacy at the stakeholder level.
We’re trying to make changes in the policy level so that palliative care becomes a human right. Now we have reached a level so that pain relief is a human right, that’s what we are advocating for right at the moment. Yes, Pallium India could bring up a national policy in palliative care in India. Pallium India, as their part of advocacy, what we do is we advocate for pain relief as a human right at the common level because anything has to be started from the stakeholder level. We have to make changes in the policy to get access for common people. We could manage the NTP amendment very recently which made the drug availability much easier than it was before. So this encourages people to come and work for palliative care and pain management, nothing like we can’t access morphine so we can’t work.
Another important activity is through our project we identify areas where there are no palliative care services and personally go out there and visit and advocate awareness. We find one or two people who are very willing to work in palliative care so we fund their whole training and we send them back with the support for three years to start their own palliative care. So within that period of three years they can actually pick up their own method, how to go forward in palliative care, the pro and cons, they can find it on their own. We keep on supporting, we keep on mentoring.
A new project that we have just launched a month back is the ECHO, Extended Community Health Outcomes. It’s the continuity; we are training people, we are sending them back and they are going to a place where there is no support for mentoring, there is no hand-holding happening. So we have started with a new programme, it’s a kind of virtual learning. We take two courses in a month so all the people who train from us will get a hand-holding for the future. They can come up with difficult scenarios, whatever they are facing in the rural place, because we are in a very comfortable setting where we have a lot of mentors but they are not like that. So they can come up with questions, it’s not didactic, they can learn from each other, ten, twenty teams. Maybe that, we plan to take it in a community level in future. You can actually access places where doctors or nurses can’t go, just completely rural, geographically very distant. We can actually use virtual learning directly to the patients maybe; we can actually use virtual learning to train non-palliative care doctors – GPs, oncologists – who are actually interested in palliative care and want to learn palliative care as the next step maybe once we finish these first sessions with ECHO.
We have a huge lot of home care patients with us, maybe more than 5,000 – 10,000 turnover a year. So extending the clinical work is another challenge that we are going to face because we need more teams, more volunteers. But as we are in Kerala it is much easier than in other parts of India because people feel palliative care is their basic right, they have to do that. So it’s not a professional thing, it’s also a community level programme.
