ICPCN has supported the strategic development of children’s palliative care in many countries during its 20-year history, providing a programme of focussed ‘in country’ support and working with partners on the ground to grow awareness of, and build capacity for, children’s palliative care. This ‘Anniversary’ article looks at one such project.
In October 2010, the UK Department for International Development (DfID) awarded a 5-year grant to Help the Hospices and ICPCN to improve access to palliative care for children in Malawi and the Maharashtra district of India, based on model programmes in each country. ICPCN designed the project working together with Help the Hospices.
Project partners included the Palliative Care Association of Malawi (PCAM) and the Indian Association of Palliative Care (IAPC), The Umodzi CPC team at Queen Elizabeth Central Hospital (Malawi) and the Department of Palliative Care at Tata Memorial Hospital (India). The overarching objective of the project was to improve the quality of life of children facing HIV and other life-limiting conditions and life-threatening illnesses.
In Malawi the development was based on the Umodzi model developed by the Department of Paediatrics at Queen Elizabeth ll Central Hospital, and now part of the Palliative Care Support Trust. The three development sites selected were the three other Central Hospitals in Malawi- Kamuzu in Lilongwe, Mazuzu in the northern region, and Zomba in the southern region.
In Maharashtra the model selected was the Tata Memorial Hospital’s Palliative Medicine Department‘s CPC programme. Three very different hospital programmes were selected: one was in Lokmanya Tilak Municipal General Hospital at Sion in Mumbai where the project was integrated into the Paediatric HIV Clinic; the second site was at a rural hospital in Jawhar, Thane, linked to four primary health care centres and a community programme; the third site was the Mahatma Ghandi Hospital, a public-private partnership hospital in Navi Mumbai with outreach into the villages.
The project prompted commitment to children’s palliative care service development above and beyond the original project scope and demonstrated how international partnerships can inspire and promote others to take on palliative care to meet the huge need for palliative care around the world.
Project mentor from India, Dr Mary Ann Muckaden reflects on the impact of this landmark project in her country:
“Prior to the initiation of this project, there was very minimal provision of Children’s Palliative Care (CPC) in Maharashtra, a populous State of India; and what did exist was mainly for children with cancer, at Tata Memorial Centre. The project demonstrated the need for CPC in varied sites and this practical experience sensitized both medical professionals and government stakeholders which, in turn, empowered local healthcare workers to provide CPC. Funding needed to be transferred locally to government over a period of time. The three project sites enrolled children with HIV, Thalassemia, Cerebral Palsy & MR, Juvenile Diabetes, Severe Malnutrition, and End stage organ failure.
Joan Marston, CEO of ICPCN was the Primary Mentor and guidance was provided by myself from Tata Memorial Centre, Dr Anilkumar Paleri (IAPC) and Kate North (Help the Hospices), whilst Dr Pradnya Talawadekar (Country Co-ordinator) and Melba Cardoz (Social worker) ran the project from 2010 to 2015. ICPCN supported our work by guiding, encouraging and building the international network.
As a result of the project:
- More than 1000 families received holistic care to improve their quality of life.
- Training was given to around 1200 doctors, nurses, social workers, psychologists and caregivers and more than 800 health care workers were sensitized to the Principles of CPC and the use of Morphine, as a pain relieving medication.
- The laws around Narcotic procurement and dispensing (NDPS Act) were amended with the efforts of many key Indian stakeholders.
- Documentation was collected which enabled us to publish papers and give conference presentations about the project.[i]
- A palliative medicine component was included in both the undergraduate medical and post graduate curriculum of Paediatrics and General Medicine.
- A Government Resolution was passed for the inclusion of palliative care in the health policy of the Government of Maharashtra in 2013.
We sincerely believe that the continued presence of ICPCN in these meetings with the Health and Women and Child ministry, along with the Indian CPC team, contributed significantly in this achievement, along with inroads into policies at the Central Govt. level.
Two of the three projects are still running today with funding from the Govt. of Maharashtra and fifteen years later the training of medical students and paediatric post-graduates has gained huge momentum.
The ICPCN resources, networking and commitment to strengthening CPC in India have played a very key role in continuing our work, both in Maharashtra and the rest of the country over several decades. They gave us the confidence to approach local funders, which continues till today. Thanks ICPCN for this key role; may we progress from strength to strength together.”
By Lizzie Chambers, Programme Manager, ICPCN.
[i] Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra – Children’s Palliative Care Project in India – PMC
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