More innovation and funding needed to improve children’s palliative care

New report sets out an optimistic vision to improve care for children with life-limiting conditions worldwide.

The report published today by the Institute of Global Health Innovation, examines the state of Children’s Palliative Care (CPC) worldwide, and sets out an “unashamedly optimistic” vision for how to radically improve the levels of care for the rapidly growing number of children around the world with life-limiting conditions.

The children’s palliative care provider of the future: A blueprint to spark scale and share innovation outlines nine critical features of CPC services. This includes physical, emotional, and social support for children and their families to ensure the best possible quality of life.

Jonty Roland, Honorary Research Fellow at the Institute of Global Health Innovation (IGHI) said, “Families of children living with life-limiting conditions are the most incredible problem solvers. Staff working at the front line are also innovating daily to provide their best care. 

"Families of children living with life-limiting conditions are the most incredible problem solvers." Jonty Roland Institute of Global Health Innovation

“We found a tremendous amount of small-scale innovation happening across the children’s palliative care sector – the problem is that it is not being supported. Palliative care is a core part of healthcare and a human right.

“There are huge opportunities to close the gap in need by forming new partnerships to help develop good ideas at a local level into global solutions, which can then benefit millions of children.”

A blueprint for the future

The research draws upon interviews with 51 children’s palliative care leaders across 27 countries, and provides a blueprint for to spark innovation, scale current work and equip frontline providers with an essential toolkit and vision for better care.

According to the International Children’s Palliative Care Network (ICPCN), over 21 million children globally need palliative care, with eight million children and young people needing access to specialised palliative care for life-limiting conditions. However, most children in need of these specialist services never receive appropriate care, with 65 percent of countries having no known children’s palliative care provision at all.

The authors highlight this global shortfall and say it cannot be addressed without cross-sector action from healthcare institutions, technology partners, and much-needed further investment.

Co-author Gianluca Fontana, Deputy Director at IGHI, commented, “In the future, children and their families need to have a broad choice of how they can access palliative care services – in their home, digitally, or in a dedicated children’s hospice, and seamlessly blended into the other healthcare services they receive.

“Partnerships with technology, consumer health, and gaming companies have already created a wide range of tools to improve the lives of children with complex and unique needs.

“We are seeing children’s palliative care catch up with other health services in areas such as user experience tracking. But we also see CPC services taking the lead and providing important lessons for other parts of a country’s health system to learn from and take on-board.”

Collaboration to improve care

The report calls for expertise and investment from organisations outside the children’s palliative care sector to help providers scale up and support these innovations. It also outlines distinct roles for governments, donors, corporations, start-ups, investors, researchers, and global health institutions.

"We are seeing children’s palliative care catch up with other health services in areas such as user experience tracking. But we also see CPC services taking the lead and providing important lessons..." Gianluca Fontana Institute of Global Health Innovation

The report also lays the groundwork for the Global Treehouse Foundation, a new initiative that looks to bring untapped resources and expertise into children’s palliative care to achieve this vision. Over the coming months, the report’s authors, together with the Global Treehouse Foundation, will bring together groups of individuals and organisations around this vision for change focusing on collaborative projects.

The CPC report comes ahead of the ICPCN’s annual awareness day on Friday 14 October. ‘Hats on for Children’s Palliative Care,’ which raises international awareness of children’s hospices and palliative care services worldwide.

For more information about the Global Treehouse foundation and their events and plans please email: info@globaltreehouse.foundation

This report was produced by Imperial College London’s Institute of Global Health Innovation with the support of Mais Research Centre. It was created with the International Children’s Palliative Care Network, Global Treehouse Foundation, Helix Centre, Isabella Seragnoli Foundation, Mais Family Office Innovation Centre, ORTO Impact, and Fondazione AIS.

The full report can be found on the Institute of Global Health Innovation website.

To attend the launch event of the report please sign up via Eventbrite.