Last week, the annual conference of the Indian Association for Palliative Care opened with plenary presentations by people with experience of palliative care, including a video presentation by Lucy Watts, a young woman with life threatening illness living in the UK.
Lucy called for access to palliative care as part of Universal Health Coverage (UHC) for all who need it, and emphasised the importance of meaningful partnerships with people with direct experience. She said: “The voice of people who have direct personal experience of palliative care either as a patient, or as a carer or family member, is fundamental to making palliative care available to all around the world.
“Who else can authentically explain palliative care and its benefits, and the way it changes lives?
“Thank-you to Indian palliative care advocates for their support of patients like me and carers. We are in this together to end serious health related suffering for people with life threatening illness.”
Dr Stephen Connor, Worldwide Hospice Palliative Care Alliance Executive Director, introduced Lucy’s video plenary and repeated the philosophy of: ‘nothing about us without us’, arguing that people with direct experience must be involved in all aspects of palliative care, such as advocacy, communications and governance.
Recognising that it’s not UHC without palliative care, the conference included a panel discussion on palliative care as part of UHC, and this theme ran throughout many of the conference sessions.
During the panel, Dr Connor noted the vital importance of creating demand for palliative care by people who need it. He said: “Death affects all of us and yet the demand for palliative care worldwide is almost non-existent.
“The recognition of the need for new voices, hearing those who are affected, and creating new partnerships is absolutely critical to achieving UHC. Without demand, this is unlikely to happen.
“UHC is the greatest opportunity of our generation. With focussed advocacy on ensuring an essential package as well as continued activity to building grassroots community support and demand, this is a crucial moment for us to demand palliative care for all who need it.”
Following the conference, Dr Connor, Professor Mary Ann Muckaden of Tata Memorial Hospital, and Dr Sushma Bhatnagar of the All India Institute of Medical Sciences, New Delhi (AIIMS), met with key Indian government staff to discuss palliative care as part of UHC, including access to essential medicines.
They discussed the proposed Indian Cancer Research Consortium, which will have palliative care as one of its five pillars.
There is work needed on a detailed analysis of the need for and capacity to deliver palliative care in India, as well as the development of tools to support implementation activities, including technical assistance.
Dr Connor met with the Director of Narcotics Control in the Ministry of Finance, to sensitise him on the need to increase training for physicians on prescribing opioid medications for pain management.
Dr Muckaden and Dr Connor spoke to the Minister of Health and Family Welfare about the Indian government’s plans for universal health coverage, as well as the need to train physicians in palliative care for adults and children.
India has been commended in the international press for the roll out of Mohalla Clinics, health and wellness centres providing free primary health care.
Dr Connor said: “The move towards UHC and the focus on health presents a massive opportunity for improving access to palliative care.
“We must join with civil society allies who have the capacity and role to engage in the discussion around health financing models and potential consequences. As the WHPCA, we believe in free at the point of use, publicly funded health services, paid for through a system of progressive taxation.”