We have now what is really the largest home care programme in India. CanSupport is the organisation, a charity, that I founded almost twenty years ago now. It was a consequence of my own experience with cancer. I realised the urgent need for ongoing support for people who in our country the majority of whom come with very advanced disease and don’t have anywhere to turn, especially when the money runs out and they are told not to come back. The focus was on providing information to people so that they could make informed choices and decisions and to provide them ongoing care until the end of life. Not just the person affected but the families too because cancer does tend to be a family affair and everyone need support. People are lost, they don’t know what to expect.

We started with that intention and started a home-based palliative care programme. Given the Indian environment again, it seemed to me that it would be more meaningful to bring care into the homes of people wherever they were. There is generally a family member willing to nurse this person, not quite sure how to do it and aching themselves and not knowing what to expect next. So, we started with one team of a doctor, a nurse and a counsellor, this was in 1997, and got a few patients from the All India Institute of Medical Sciences which is the premier cancer facility and hospital in Delhi and started visiting them. These were terminal patients and we just realised that it made such a difference both to the quality of the life of the person we were nursing as well as the family.

I think what was very interesting was the fact that people were so amazed to even think that care could come to their doorstep. It was something they had never thought possible. Plus the fact that we were dealing with patients who had been given oral morphine and so there was that issue too. Are they taking the morphine as they should? Do they need to have the dosage changed? And these were things that the doctor sitting in the hospital couldn’t do necessarily. Patients were too sick to come back; sometimes family was busy and couldn’t get back in time to even get the next dose. I think we also saw ourselves as filling that gap.

Today I am happy to say that we have almost 2,000 patients under our care at any one time. We have something like 28 teams out in the field and each team has a doctor, a nurse and a counsellor. It’s a completely free service. We run on the goodwill and generosity of others, be they individuals, trusts, foundations. It has made a great difference both in terms of promoting palliative care, because that was something that we had to do hand in hand - start a service as well as get the medical community on board because when we started out palliative care was relatively unknown, doctors weren’t quite sure what we were about. Getting them to understand that even a drug like oral morphine was the drug of choice for their patients; that we wished them to stay on board with us even as we were nursing this person; that we needed them as a partner and that we were there to really now, not so much talk about oncology any more or cancer but about the person and the psychosocial and spiritual sides. We would assist with those areas.

I am happy to say that twenty years on I think that the medical community is, by and large, much more open, much more willing to be partners with us in this endeavour. A long way to go, certainly, given India’s population and Delhi’s population which is almost 16 million; I suspect we’re just touching the tip of the iceberg, but hopefully this will become part of mainstream medicine. I think that’s where I see it going because small organisation like ours can’t meet the need out there in any meaningful way. But perhaps we have shown a way. We have a model that’s replicable, that’s scalable, and something that could therefore become now part of the medical care system that exists and have more and more people who we can’t reach receive the benefit of palliative care both at the beginning of their treatments and at the end of life.

How do the teams work together in this setting?

The teams meet once a fortnight, on a Thursday generally. Initially we could fit them all in one room, we can’t do that anymore as they have grown. We have divided them geographically. The teams that are based in East and South Delhi meet together and the ones in the West and North meet together.  I think we were very conscious from the very beginning that not only did they need to meet to talk about their patients and it was an opportunity to learn more and have people… we perhaps bring in people from outside as well to fill in the gaps or where they felt they needed more information and knowledge. But they themselves were given a chance to present and feel that they were also growing in terms of their own professional capacities and capabilities. But also to get them to just talk about their feelings - such an important part of what they are doing. You know that patient who no matter what, you developed a relationship with and it’s someone you’ve now lost, and how do you cope with that? We also have a psychiatrist available should people need that. We organise laughter therapy, we get people to do yoga, deep breathing, relaxing, encourage them to do a fun activity at home. It’s really investing in our staff as well, so important in the work that we do.

When does the relationship between the team and the family end?

I think the relationship really doesn’t end. It starts out with us visiting the family a week afterwards, because that one week they are very busy, they have all the relatives around, all kinds of rituals being fulfilled, so they are quite involved, but a week later they’re alone. That’s the time we take to go there and make them aware of the fact that should they want to talk going forwards they’re always welcome to do that. The team would visit again after a month just to make sure everything is fine. If we find signs of what are known a complicated grief then I think we’d keep an eye much more on that person.

Then a year later we have a remembrance day and it’s marvellous to see the families come back, you know it’s such a wonderful closure for the teams too. Because the teams want to know what happened to those families and they come back and they see them now coping with their loss, so thankful for the support they received. It really does an immense lot of good both to the care giver and to those who were the beneficiaries. Now we get more that 50% of our referrals through our beneficiaries. So, there you are, they connected with us, that goes on. I see it very much as a lifelong relationship. They tell other people in their communities about us, they often give us donations, they attend our events, they want to know how they can help us going on.

We have organised for some of them who found themselves in difficult circumstances a nursing assistant’s course maybe for young women who now need some way of supporting themselves. We’ve put them in touch with organisations that can offer them the skills that they may now need to be able to afford to carry on. It’s really marvellous, we call it the CanSupport family and it’s ever-growing. We feel all the more rich for that.