Novi Survat Goa, a non- profit children’s palliative care organisation, has been providing holistic care to
families having children with diseases or disorders for which there is no cure
CHRISTINE MACHADO NT NETWORK
The first thing that strikes you as you step into Novi Survat Goa, located in an old Goan house in Sangolda, is the homely feel of the space. The second: the easy smiles on the faces of the children visiting the centre which provides physiotherapy, recreational therapy, and palliative care. It is evident that they enjoy coming for their sessions here.
“I know that kids do not like a hospital set-up. So by having this centre in a bungalow, coming here is like coming to a home, a place which feels familiar and where they can relax,” says Dr. Philomena D’Souza, who founded the non-profit organisation five years ago.
A former paediatrician at Goa Medical College, Bambolim (G.M.C.), where she worked for 31 years, Dr. D’Souza reveals she observed that there were instances where the families of children with disabilities could not afford to come to G.M.C. for physiotherapy sessions. “There was also a paucity of therapists at that time, and these children could get sessions only once a month or once in two months, that too for only 15 to 20 minutes each,” she says.
Having realised that there was a big lacuna here, she began her own physiotherapy unit in 2007. Each child is attended to by only one therapist at this centre, and they get one full hour of therapy as frequently as needed. The centre has also tied up with Sanjay School, Porvorim, in this regard.
Five years ago, Dr. D’Souza decided to enter the field of palliative care, which at that time was not a familiar concept in Goa. Clarifying that this is not end of life support as is commonly assumed, she explains that palliative care is a broad term to describe supportive care for those who have illness, diseases, defects, or disorders for which there is no hope of cure, with many succumbing by their 20s.
“Our aim is to reduce the agony and burden of families who have such children. It means giving them complete holistic support, be it mentally, emotionally, or spiritually or helping them with their material needs like giving them physical support, nutrition, supplementation and medication intervention. We also train them in activities of daily living and teach them how to become as independent as possible,” she says.
The centre also aids the families in acquiring identity cards to avail themselves of government schemes. In fact, says Dr. D’Souza, many times, parents are not aware of their rights and the schemes available to them. “The process for availing these schemes, however, is so mindboggling. To upload a document sometimes takes two or three hours. Which family that is struggling with normal and special children is going to have time to do that? The process is very heartbreaking,” she says. However, the disability cell in Porvorim has really been helpful, she adds. “They address our needs and try to help when they can but certain things are beyond their resources as well,” she says.
Novi Survat provides free transport to the children and families to hospital when necessary. They also have free pick and drop services for the children and family members to the centre. And children come from great distances to avail themselves of the services here.
Atharv Deshpande and his mother, for instance, travel to the centre from Keri. The youngster, who suffers from spastic diplegia, a form of cerebral palsy, was unable to even sit when he first began coming to the centre in August 2022. Seven months later, he can now sit by himself and pays close attention to the instructions of Dr. Megha Deshpande, a paediatric physiotherapist who has been with the centre since 2011.
While Atharv comes to the centre once a week, some children, says Dr. Deshpande, require sessions more frequently, depending on their condition.
“One of the main challenges we face is that parents usually take time before realising that medical intervention may be necessary when the child’s development is delayed. A child’s development usually begins around three months with head holding, followed by rolling, and then sitting. Before the child completes one year, it should be able to sit, crawl and stand. But many times, parents come to us when the child is three or four years old, telling us that the child is not sitting. So education of the parents is a must,” says Dr. Deshpande, adding that early intervention is best. Most paediatricians now refer the child to them by even six months if they feel there is a problem with the child’s
development.
Parents need to understand that when they come for physiotherapy, it is a long-term procedure, and will take years, she adds. The centre only caters to children upto 18 years, following which they are then referred to other centres.
“The most important person in this process is usually the mother as she is with the child 24 hours. So I also teach the exercises to the mother as these have to be continued at home. We recommend that these exercises be done at home at least three times a day,” says Deshpande. But thrice may not always be possible owing to the many household responsibilities. At times though, siblings too help out.
In fact, says Dr. D’ Souza, it has been really amazing to observe the way the siblings, be it elder or younger ones, reach out and help these children, be it in changing them, cleaning them and helping them with their exercises.
With palliative care for children worldwide now shifting from institute to home care, four years ago, Novi Survat also began its home care programme. While the South Goa wing is fairly well-established and is working with the District Hospital in Margao, the organisation is now in the process of setting up its North Goa team.
“There is hardly any awareness about supportive care for children having chronic illness and diseases. More and more children are being affected and families are in real need of counselling, which is the main service we provide to the parents, family, and to the child,” says
Dr. D’Souza.
For these families, it is a constant struggle. “It is only when you have someone in your family or you know someone who is struggling that you realise that all of us have a role to play to help; it could be as small as just exchanging a kind word. It all makes a difference,” she says. “While each of us have our own struggles, theirs is even more as they are dealing with a child they can’t always understand. A lot of times there is a feeling of helplessness.”
In fact, admits Dr. D’Souza, there are instances when even they feel helplessness and hopelessness when a child’s progress is not as expected or does not yield results. But the only way to get through it is by supporting each other, and the team members ensure they motivate each other. They also do weekend outings sometimes. Birthdays and minor goals are celebrated at the centre with the children. A few festivals are also celebrated. “Love is something we cannot do without. So when you see a parent struggling with their special needs child, give him/her a helping hand. People don’t reach out, they exclude them, isolate them. In villages especially, there is a lot of isolation,” says Dr. D’Souza. “Sometimes, in our immediate neighbourhood, children are hidden because they have disabilities and people would not want to see them.”
There is a need to bring about a change in the public transport scenario too, she says. Many patients face problems in reaching the centre.
“Whether it is visiting the medical college or health services, how many buses will take them willingly? Just because the child and the relative have a free pass, private buses do not want to take them in. Also because they are on a wheelchair that occupies space, taking them into the bus means losing out on passengers and so they are reluctant to let them on. I have seen mothers standing with their children at bus stops and no one is willing to take them,” says Dr. D’Souza, adding that this was the primary reason why they began providing free transport to patients at Novi Survat.
Another change she wants to bring about is to increase community involvement. “More people should reach out to help families and children in neighbourhood. And they need to be trained to recognise which children to target and how they can help,” she says, adding that many people, in fact, are willing to come out and help if they know how to. “Some have to overcome certain prejudices but that is part and parcel of getting things done.”
In fact, the centre has already began training college students in this respect. The Government College of Arts, Science and Commerce, Khandola, was the first one to enter into an MOU with Novi Survat, where there will be a series of lectures and practical sessions for first year students.
“We are happy to have young people involved because they will be the change we want to see,” says Dr. D’Souza, adding that the response has been encouraging. “When we talk to students, we see that they are really interested to help. They realise that the power is within them to do it. Once their heart tells them they have to go out and do it, they will do it,” she says.
Novi Survat is looking for bigger premises and is hopeful of starting aqua therapy in the future as this form of therapy is painless for the children and shows results in half the time.