A visit to Jawhar, India, where children’s palliative care is making a difference

Categories: Uncategorized.

At 6h30 on Friday 7 February a group of 17 speakers. delegates, ICPCN staff and board members attending the first ICPCN Conference now happening in Mumbai, boarded a bus for a four hour journey into the beautiful Indian countryside. Included in the group was SIster Frances Dominica, the founder of the children’s hospice movement and of Helen and Douglas House, in the United Kingdom. Their mission – to visit the rural village of Jawhar and find out more about the development of children’s palliative care in this region. Mumbai is known as the ‘city that never sleeps’, so despite the early hour the roads of the city were already busy and it was well over an hour before we finally left the buildings behind and could drink in the beauty of the Indian countryside.  

Four hours later, after a breakfast stop along the way,we finally reached the Patangshah Cottage Hospital in Jawhar, The hospital, a remodelled palace once proudly owned by a Prince of India, was a bustling hive of activity. The group was warmly welcomed into a room and served drinks before being given an overview of the work in children’s palliative care being done in this hospital and the surrounding villages. The group was addressed by Dr Pradnya Talawadekar, who heads up the Children’s Palliative Care Project in India, (part of the Help the Hospices and ICPCN Two country project being funded by UK AID) and Dr Mrunal Marathe,who works with the project as a counsellor to the children and their families. We were also given a tour of the hospital by Nilesh Raval, a social worker who works with the children in the programme.

This site in Jawhar represents one of the three sites where children’s palliative care is being developed in the Maharashtra district of India, as part of the Two country project. This particular arm of the project has 280 children on their files with life limiting conditions such as Cerebral Palsy (a condition which often causes early death in this part of the world) malnutrition, thalassaemia. sickle cell anaemia and cancers.

As a result of the work, morphine is now being stocked in the hospital, although only prescribed under strict supervision. Doctors and nurses in the hospital have received training in children’s palliative care, as have the 220 ASHA workers who form a vital link in the referral system between the children in the villages and the professionals in the hospital. ASHA workers derive their name from the acronym for Accredited Social Health Activists and are woman with a minimum Grade 7 education who live among the people in the surrounding villages and are trained to recognise symptoms and conditions for which medical intervention would be needed. They are also trained to provide information and education to the people they visit on issues related to health and hygiene. The ASHA workers meet monthly with their managers in order to receive training and to be proved with help with any problems they may encounter.

A well equipped NICU and a colourful children’s treatment centre came as a wonderful surprise amidst the general rundown state of the rest of the hospital and it was good to be given a chance to interact with some of the children and their parents on the ward.

The next stop on the tour was to meet a small group  ASHA workers at a local clinic who generously shared some of their thoughts and insights with the group. They spoke of some challenges as well as the joys of their work and what motivates them to do what they do. A young woman said that it was very gratifying for her to see how people who take the advice she gives can get better and get on with their lives.

The group, who work four hours a day agreed that some of their biggest challenges included

  • persuading people to seek medical assistance rather than that provided by Traditional healers;
  • persuading mothers to give birth to their babies in a hospital setting and
  • not being able to meet expectations, such as providing money for the transport to hospital.

The long trip back to Mumbai provided the group with a chance to absorb and reflect on what they had seen that day. “I will never, ever complain about the resources and state of my hospital again,” was the response of one doctor. “It humbles me to see how people who have access to so little in the way of resources, can still make such a big impact on the lives of the community they serve,” was the reflection of another.

You can read more about the two country project on the ICPCN website by following this link: http://www.icpcn.org/special-projects/two-country-project/

Leave a Reply

Your email address will not be published. Required fields are marked *