Who cares? Palliative care and Universal Health Coverage: the role of community based care

Yesterday (12 December 2016), was Universal Health Coverage Day,organisations and individuals around the globe pledged to ‘Act with Ambition’ to ensure that everyone can access quality essential health services without financial hardship.

Palliative care is a defining aspect of Universal Health Coverage (UHC). Hospice UK and Island Hospice and Healthcare hosted an event on community palliative care and UHC in collaboration with the Worldwide Hospice Palliative Care Alliance (WHPCA). Claire Morris (WHPCA), Kate North (Hospice UK) and Bev Sebastian (Island Hospice and Healthcare) report on the event held recently at Hospice House in London.


The purpose of the event was to create a space for discussion around the health policy issue of the moment: Universal Health Coverage, one of the core targets under the Sustainable Development Goals on Health. In particular, how quality community based care programmes, specifically palliative care programmes, fit into this discussion and the implementation of UHC.

We were delighted to have excellent speakers bring a broad range of expertise and knowledge to the discussion. These included:  Bev Sebastian (Executive Director, Island Hospice and Healthcare, Zimbabwe), Jo Ecclestone Ford (Lead Trust Executive, UK and Africa, True Colours Trust), Simon Wright (Head of Health, Save the Children), and  Rob Yates (Senior Fellow, Chatham House).

The event was funded by the Big Lottery Fund (BLF) as part of the COLLABORATE project.

Who was there?

There was a varied and vibrant list of 33 participants from a range of organisations representing the public sector, INGOs, academics and practitioners. We were delighted to welcome representatives from the UK’s Department for International Development (DfID) and the Medical Research Council, as well as INGOs such as World Child Cancer and Help Age International, Zimbabweans working in the UK palliative care settings and palliative care advocates from organisations such as Palliative Care Works and the International Children’s Palliative Care Network.

What we learned

Informative presentations and productive discussions resulted in a number of important insights, which included the following:

  • There are really successful palliative care programmes doing fantastic work in implementing quality, community based palliative care programmes. Several of these are in resource-limited settings such as Malawi and Zimbabwe.
  • The three year programme, COLLABORATE, in Zimbabwe funded by BLF with Hospice UK and Island Hospice and Healthcare saw significant improvement in patient quality of life in the Goromonzi district as well as a positive transformation of knowledge and care practices by carers and service providers including those within the health system.
  • The project in Malawi funded by True Colours Trust has seen every district include a budget line on palliative care, and the number of people accessing palliative care in Southern Malawi has increased by 250 percent! Much credit was given to the excellent partners including the Palliative Care Association of Malawi.
  • UHC is about equity. People who need more health care, like people with life-limiting illness, must get it.
  • The global movement on UHC is strong and political. It is critical to be part of the debate.
  • The reliance on donor funding for health to date is problematic. As an example, health has fallen from the 1st to 4th place in relation to DfID spending.
  • Palliative care is a critical component of UHC as defined by the World Health Organization, as part of the continuum of essential healthcare. 

Simon Wright, Head of Health at Save the Children, commented on the need to strengthen systems to provide healthcare. He said: “Donor aid is unreliable – we need systems to provide universal essential health care.”

Mr Wright also noted the need for evidence for the inclusion of palliative care in discussions on UHC, saying: “Palliative care needs to show cost effectiveness, citizen need and integration to get included in UHC.”

Rob Yates, Senior Fellow at Chatham House, added to this, saying: “We need a palliative care indicator to be included in UHC,” recognising that ‘what gets measured, gets done’.

Discussing the success of the True Colours Trust-funded project in Malawi, Jo Ecclestone Ford commended the work of the “excellent partners”, including the Palliative Care Association of Malawi.

She said: “If you find the right partner, it is amazing the change you can achieve.”

“Models like COLLABORATE work because they address issues of equity, improve quality of life, and are cost effective,” added Bev Sebastian, “but for such models to be sustainable we must work towards ensuring palliative care is included within the health system.”

What now?

There were clear messages from the meeting on where the palliative care community needs to go next:

  1. Palliative and community based care advocates need to get political. Messaging is important as is who you talk to about what. The decisions are happening nationally and this is a political issue.
  2. Programmers should publish the learning and findings from their projects and ensure that learning is disseminated and collected to inform policy development.
  3. Research is critical to get some vital answers – What is a basic package of care? What does it cost? What does it cost not to do it? How is it cost effective? Who pays for it? How do you measure palliative care coverage? What is the role of volunteers and communities in delivering UHC?

A final note from Rob Yates was to look carefully at the messaging. Palliative care advocates need to think very hard about how this issue is discussed, recognising that:

“It is not UHC if there isn’t palliative care for everyone who needs it!”

You can download the presentations from the WHPCA website