Scottish children's hospices are helping to establish a template for palliative care thousands of miles away in India.
Four representatives of Kerala-based palliative care institute C4CCCI (Caring for Childhood Cancer and Chronic Illness) left Scotland on Friday after a two-week trip as guests of the country's only children's hospice charity Chas (Children's Hospice Association Scotland). Both sides hope the visit will form the start of a fruitful relationship.
Chas runs two children's hospices - at Kinross and Balloch - mostly helping families cope with children who have neuro-degenerative disorders. In Kerala, the majority of children using the hospice suffer illnesses such as leukaemia - treatable in the West.
Chairwoman Dr Lulu Mathews said they were "overwhelmed" by the quality of support that Chas provides for terminally ill children and their families, at both centres and through its homecare and befriending services.
"The difference between the two countries is enormous," Mathews told the Sunday Herald. "Palliative care in India is a new thing in itself, so palliative care for children is practically revolutionary. I am really impressed with the happiness of the environment here - it has everything a child needs. It's quite inspirational."
Before C4CCCI was established in 2005, treatment often had to be abandoned because it was simply too expensive. Now costs for medicine, accommodation, travel and food are covered by the hospice, which is mainly staffed by volunteers.
"Terminal care has been replaced by palliative care - the bereavement process begins at diagnosis - not death. It is no longer just about dealing with a child once they are dying, but providing care for three or four years before that happens and offering support through monthly visits. We want to add life to years, not years to life," Mathews added.
Of the 130 hospices in the whole of India, 76 are based in the southern region - only possibly because of a vast network of volunteers.
Roslyn Neely, director of fundraising and communications at Chas, says the visit was mutually beneficial. "We've learned an incredible amount from them. What they are able to achieve in India is incredibly inspiring and humbling, especially because they are dealing with things on a much larger scale. What we call an army' of volunteers is 900 across Scotland - for them it's 9000 across Kerala. Theirs is a much more challenging environment, but we both come at it with children and families at the core. We both have the same values at heart and we both take a positive approach. It's about meeting challenges, not problems."
Mathews agrees: "Our goals and aims are the same, but the way we go about delivering them has to be different because our situation's different. Here everything from the administration to the childcare level is highly professional. Whatever is good for our set-up we will take from here and incorporate, but just apeing it will be no good."
Mathews' team was particularly inspired by charity shops - a fundraising initiative almost unheard of in India, but which it is keen to introduce.
Clydebank mother-of-three, Carol McLean, 32, has been a regular visitor to Chas hospices since Rachel House opened in 1996. Her son John, 14, has chronic lung, heart and bowel problems, but she says the centres have become a home-from-home for the whole family.
"When you get up in the morning you have to live for today. Even when they're really, really poorly you still have to build those long-term memories. People think I'm crazy when I say this but when you come here, you forget it's a hospice. People picture this hospitalised environment, but Chas is a really joyful place - John loves it."
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