Children’s Palliative Care Projects in Maharashtra and Goa

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World Hospice and Palliative Care Day:

IAPC’s Special Feature on

Paediatric Palliative Care-5

The Children’s Palliative Care Project (CPC), was launched in Maharashtra, in 2010, with National and International Collaboration and was a major breakthrough in the development of Pediatric Palliative Care Projects in India; especially for non-cancer.

This five year project, implemented from April 2010 to March 2015, was developed in collaboration with Department for International Development (DfID), Hospice UK, International Children’s Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre,Mumbai to advocate and provide holistic care to children with life limiting illnesses and their families.

The project envisaged working alongside stakeholders from the Government of Maharashtra to prepare a policy document and develop model centres to provide Children’s Palliative Care.

Christmas celebration in the
Paediatric ward
1st Model Centre
  • Was started at Jawhar (rural site) in February 2011, in association with the Maharashtra National Rural Health Mission (NRHM).
  • Most beneficiaries were children with neurological conditions and children with severe malnutrition.
2nd Model Centre
  • Began in August 2011, in collaboration with the Department of Pediatrics, LTMG Hospital, Sion, Mumbai (urban site).
  • Beneficiaries were Children with HIV
3rd Model Centre
  • Began in Mumbai, in January 2013, in association with MGM Hospital, Kalamboli; a combination of Urban and Rural population.
  • Services were rendered to children with various life limiting conditions i.e. Thalassemia, Cerebral palsy and Muscular dystrophy.
Other outcomes through the project included:
  • Large scale training of Health Care Workers in Paediatric Palliative Care; the project showed improvements in health workers’ knowledge.
  • Increased Awareness among policy makers regarding the need for Children’s Palliative Care in this region.
  • Passing of a Government Resolution on 15th June 2013, for Implementing PC in Maharashtra, which also included the coverage of Non Communicable Diseases in the program.
  • Formation of a Project Implementation Plan (PIP) with the State’s NHM for implementing Palliative Care throughout Maharashtra.
  • Inclusion of PC in Undergraduate and Post Graduate Curricula, post several advocacy meetings with both the State and Central level officials and other stakeholders such as DMER, MUHS, NRHM, IAP, MDACS to facilitate the inclusion of CPC.
  • Approval of the Integrated Child Protection Scheme (ICPS) for children and families suffering with a Life Limiting illness, by the Ministry of Women and Child Development, Government of India, on 27th December 2013. This plan allowed for the child and the family to apply for a sponsorship of Rs. 2000 per month.
  • Development of various Educational materials and manuals.
  • Improved awareness by leveraging Media.

The experiences gained from this project was utilised to sustain this project after its completion and also enabled us to launch several other projects in Paediatric Palliative Care in Maharashtra and Goa over the following years.

The other PPC Projects in Maharashtra and Goa
  1. Children’s Palliative Care Project was launched In June 2015 with support from Balkrishna Industries Ltd (BKT)
    • The 1st centre under this project began at Dr. Hedgewar Hospital, Aurangabad, with the Department of Paediatrics for children suffering with Thalassemia.
    • The 2nd centerbegan at Goa was in collaboration with Prateek Menezes Foundation. This centre catered its services to children with advanced cancer, cerebral palsy and other conditions.
    • A total of 350 health care professionals were trained at both centers.
    • Children from both centers were helped with ration, wheel chairs, diversion therapy, social help and counselling.
    • Monthly support group meetings were conducted with caregivers
    • Since June 2021, the collaboration has been expanded with an NGO, Novi Survat, Goa to cater to the needs of children with serious illnesses.
  2. TMH-Cipla Foundation Collaborative Project
    The Department of Palliative Medicine at the Tata Memorial Centre started a collaborative Paediatric Palliative Care Project with Cipla Foundation, with the vision of setting up five centres across Mumbai and its suburbs for specialist Paediatric Palliative Care for non-oncological conditions.

    1. The first center under this project was established at Chhatrapati Shivaji Maharaj Hospital & Rajiv Gandhi Medical College (CSMH & RGMC) Kalwa, District, Thane in February 2019 to care for children with various life limiting conditions like cerebral palsy, Thalassemia, and intellectual disability.
      • Activities of the project included the provisioning of medical management, counselling, referrals to Physiotherapy, Occupational Therapy, Speech Therapy, special schools, access to government welfare schemes, nutritional support and home care.
      • The Covid-19 Pandemic has however, temporarily suspended the home care services. All patients are followed up via telephones (due to Covid imposed restrictions). During these telephonic follow ups, it was observed that caregivers face a lot of issues ranging from “no money to buy medicines/ration, to difficulties in travelling to health care facilities due to the anxiety about COVID-19”.
      • To cater to children who stay far away like Mumbra, Vikramgad, Dombivali, Bhiwandi, we tried to help them through networking with NGOs, Community leaders, Doctors, and Social Worker groups. Networking with NGOs, Pharmacies, Grocery shops and Local Doctors helped deliver care to patients during the Covid-19 crisis.
      • Practical and logistic support was done by providing diapers, wheel chairs, dressing materials and air beds to bedridden child with bed sores and contractures.
      • Nutritional supplements were provided to children with either SAM or TB and for children with financial issues.
      • Toys and drawing materials were given to children as diversion therapy.
      • Over 600 families have been helped through the project.
    2. The second centre under this collaboration was openedin June 2021, in the Department of Paediatrics, BYL Nair Hospital, Mumbai.
      • It is a tertiary care hospital under Brihanmumbai Municipal Corporation in the heart of Mumbai.
      • Children from all over the state of Maharashtra are referred here for specialised care.
      • Within last one and half months, despite the fear and worry about 3rd wave of Covid 19, more than 60 children have accessed this service

Grateful to the Mentors and Supporters of Pediatric Palliative Care Projects in Maharashtra (in alphabetical order):

Dr. Jayita Deodhar, Professor, Dept of Palliative Medicine, Tata Memorial Hospital
Dr. M.A. Muckaden, Consultant, Dept of Palliative Medicine, Tata Memorial Hospital
Dr. Poonam Wade, Associate Prof, Dept of Pediatrics, B.Y.L. Nair Hospital, Mumbai
Dr. Sushma Malik, Prof & Head, Dept of Pediatrics, B.Y.L.Nair Hospital, Mumbai
Dr. Swapnali Kadam, Palliative Care Coordinator, Chhatrapati Shivaji Maharaj Hospital, Kalwa
Dr. Vandana Kumavat, Prof & Head, Dept of Pediatrics, Chhatrapati Shivaji Maharaj Hospital, Kalwa

I would like to acknowledge the sincere efforts of mentors from the Department of Paediatrics at BYL Nair Hospital and Chhatrapati Shivaji Maharaj Hospital, Kalwa; Novi Survat, Goa; Balkrishna Industries Limited, Cipla Foundation and my team at TMC, Mumbai.

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