The Children’s Palliative Care Project with Heard

We’re delighted to be working with Heard on a long-term piece of work to change the way children’s palliative care is talked about in the media and thought about in public life. Our aim is to help people show how children’s palliative care is at its best, raising awareness of what good palliative care looks like, improving communication, and ultimately resulting in better experiences for children and families.

This project works directly with families who have experienced children’s palliative care, professionals working in the sector and the media.

Heard (formerly On Road Media) is a communications charity that works ‘to inspire content and communication that changes hearts and minds’.

The charity believes that good communication can shift perspectives and move conversations - and society - forward.

Heard connects media professionals with people who’ve directly experienced different issues; supports people to get the most out of media engagements; and uses insights from research to help those telling their stories ensure that their message lands and engages audiences.

We have been working with Heard since 2020. Work began with market research by Truth which looked at existing public perceptions of children’s palliative care and explored narratives that could promote a better understanding.

This led to the development of a practical Communications Toolkit which provides guidance on how to talk about children’s palliative care, using learning from the research and best practice approaches to changing perceptions.

The Communications Toolkit has been shared with hundreds of people, helping them to communicate engagingly and effectively. Heard is now working with a number of key organisations in the sector to maximise the efficacy of their messaging. It also runs a network of families and professionals with direct experience of children’s palliative care to ensure that their stories and perspectives are heard and understood – this is done through meetings, media training and peer-to-peer support.

The project is supported by an expert panel of parents and professionals. One ongoing issue identified by the panel was challenges within the healthcare system itself, including a general misunderstanding of children’s palliative care amongst other healthcare providers resulting in lack of / late referrals. We have therefore asked Professor Richard Harding and Professor Lorna Fraser at Kings College London to undertake ‘a scoping review of the evidence for barriers and facilitators to palliative care referral and access’ so we can better understand these issues and ascertain if and how better communication could be used to address challenges. We look forward to reviewing the evidence from this review in due course.

We have been delighted by the positive response we’ve seen both to the Toolkit and the overall project. We know that there is a huge appetite and potential for better communication around this subject – and we know that this will ultimately improve the experiences of children and families.

Download Communications Toolkit Download Truth Research