Throughout the year, IAHPC board members contribute a range of opinion pieces and other thought-provoking articles to the IAHPC Newsletter. This month, it is the turn of Professor Julia Downing.
Professor Julia Downing is the Chief Executive of the International Children’s Palliative Care Network and is an honorary professor at Makerere University in Uganda, along with universities in Serbia and the UK. She is a board member for IAHPC and has been working internationally in palliative care for many years.
It is now nearly five months since I took on the role of Chief Executive of the International Children’s Palliative Care Network (ICPCN), which I am undertaking alongside my work as a professor in palliative care. Since taking up this role I have been challenged as to how best to ‘Tell our story’. As a nurse, educationalist and researcher I know how to write up research for publication, to teach health and social care professionals about palliative care, but am not sure that I really know how to ‘tell our story’ to everyone else. When writing for a newsletter or ehospice, or putting together a funding proposal there is a middle ground – it doesn’t need to be too academic, but there is room for some research, quoting some studies, using some jargon and assuming the readership will understand this. However, what about for everyone else? For the journalist with no healthcare background, for the parent or carer, for members of the general public, for those on Facebook and other social media? How can we best ‘Tell our story’?
I am fortunate to travel around the world working with passionate individuals working tirelessly in the provision of palliative care, both for children and adults, and I witness and hear many inspiring stories – how best can I get across what individuals and organizations are doing and how do I show the impact of the work that we do?
Currently, there is a wide range of infographics displaying the work of organizations, showing the reach and demonstrating the impact of their work. Indeed, on the project I worked on in Serbia a few years ago we developed an infographic to show outcomes such as how many people we had trained, how many palliative care units had opened, how many training programs we had developed. It was great to be able to show all that we had achieved throughout the duration of the project. Yet we still were not telling the complete story – what is behind the numbers?
What about the child whose pain was controlled after months of suffering? What about the elderly lady who was admitted to the palliative care unit and received quality care at the end of her life? What about the father who continues to grieve after the death of his small child and needs ongoing bereavement support? These are the real ‘stories’ – the real impact of the work that we do.
As an international organization working to support the development and provision of children’s palliative care, we need to get behind the figures, behind the numbers of staff trained, and be able to show how that training has impacted on the lives of the individuals trained and also on the lives of those children and families receiving palliative care. It is not good enough just saying we have trained 200 people, if that training has not then resulted in improved access to care. Instead, we need to be able to say that we have trained 200 people and this is the difference that we have made. It is in the lives of the children and adults for whom we provide palliative care where the difference can be seen, where the real stories are found – and for many of us, the telling of those stories continues to remain a challenge. Yet we need to find a way to demonstrate the value of the work that we are doing, the impact on the lives of many individuals and their families, along with the health professionals caring for them.
Recently, whilst evaluating the impact of a project to integrate and strengthen palliative care into four African countries (Kenya, Uganda, Zambia and Rwanda)  a ward sister showed us how the project had impacted on the care of children in her ward. She asked us to listen – we couldn’t hear anything, as it was silent – she went on to tell us that this silence was the impact of the project as now the children were no longer in pain as the nurses knew how to manage their pain. This was a powerful moment for all of us – the story of silence – the story of the real impact of the work.
I therefore challenge each of us, just as I have been challenged, to think about how we ‘tell the story’ of our work. What is your story? How would you tell others about the impact of your work in ways that are clear and understandable? How can we inspire others about palliative care through our stories?
1. Strengthening and integrating palliative care into national health systems in Kenya, Rwanda, Uganda and Zambia. A project funded via the Tropical Health and Education Trust (THET) to the Global Health Academy at the University of Edinburgh (UoE), working in partnership with the African Palliative Care Association (APCA) and Makerere Palliative Care Unit (MPCU) and in conjunction with the Ministries of health and the national palliative care associations or organisations in each country to deliver the programme of work.