I’ve been coming to India regularly for the past five years because we have a programme developing children’s palliative care in Maharashtra linked to developments in Malawi as well. So every year I come to the Indian conference and usually I speak about part of the project. This year I spoke about developing models of care because we took a model of excellence in Mumbai and we’ve replicated it in different ways in three other hospitals. So I spoke about that and then tomorrow I’m going to be speaking about children’s expressions of dying, what they say and how they experience dying from the outside. All I can do is tell the stories. And also looking at how we’ve put together a technical package of children’s palliative care for organisations that want to start it. Because I’m on the WHO technical advisory group on palliative care and that’s one of the things that we’re doing in this particular group.
What models of palliative care are you currently developing?
It’s a model based in Tata Memorial Centre in the Department of Palliative Care where they deal with adults and with children. They’ve been providing this palliative care for a number of years, not only within the hospital but also in the community as well, doing outreach to patients who have been in hospital but who have left hospital. They also do a tremendous amount of education. So it’s a model that’s based within the health system but they use a lot of volunteers as well. So while they’re based within the health system they also have a great involvement of the community through the volunteers and through their outreach into the community. It’s a model where they give a very high standard of palliative care for children so we felt it had all the elements that we would like to see replicated in other hospitals as well. So we took it then first of all to a centre of excellence for HIV for children in Sion Hospital. The interesting thing there is that they started in the clinic for HIV for children but it then went on to children with sickle cell, children with neurological conditions and now it’s within the whole paediatric department. So from the clinic in HIV to the whole paediatric department.
Then we went to a rural hospital about four hours out of Mumbai where they have a little cottage hospital linked to four primary healthcare clinics and then a big community project. There we trained the ASHA workers, the community workers, to identify children who need palliative care. There they’ve picked up a lot of children with cerebral palsy especially. So that training has gone from the hospital to the clinics into community workers.
The third model was a public-private partnership linked to a medical educational facility as well. It’s a Mahatma Gandhi centre run on the ideals of Mahatma Gandhi as well. So it’s been a really interesting journey starting with a particular model that really was based in a cancer hospital and seeing how we could adapt it to all these different settings.
Can these models be replicated for India?
We’re actually here at the conference hoping that we can persuade some funders as well to continue it. There have been a number of requests to take it into other states in India as well. We’re doing this alongside a similar thing in Malawi where they’ve taken a model in one of the central hospitals in Blantyre and it’s been introduced into all the central hospitals in Malawi and now it’s going to be rolled out to the districts.
Tell us about Awareness Alliance and what it aims to do
We’re doing an assessment of need of how many children need palliative care. We did it in three African countries to get the methodology and now that methodology is being applied in a variety of other countries so that we can do a global estimate. We know it’s at least 20 million and the figure is probably higher than that. Our recent preliminary data out of India was just under 7 million for generalised care and just under 2 million for specialised palliative care and that was excluding the children with the severe sequela of cerebral palsy and that is a huge number. So it’s big numbers. The 20 million is a very low estimate of the global need.
I think that what is really important is that we remember that children need palliative care just as much as adults and that to provide that palliative care people have to have the proper training, not just to care for the clinical side but to care for the emotions, the spiritual side of children and to communicate with children from that tiny little newborn baby up until they’re young adults.
What would you recommend to healthcare professionals looking to improve paediatric palliative care?
It would depend where you are in the world. If you’re in a country that’s close to another country where there’s good training and a good clinical practical site, that would be what we would recommend, that you went to the nearest place to learn. But there are parts of the world where, in fact, there are very few resources. So as the International Children’s Palliative Care Network we decided the only way to get it out there was through e-learning. Where there isn’t the availability of face to face training and experience then we do encourage people to do e-learning.