Raising the profile of children’s palliative care at the EAPC conference

Categories: Leadership.

This year at the EAPC conference, held last week in Madrid, the newly revised EAPC Taskforce – launched last year, held an open meeting as well as supporting a parallel session on children’s palliative care. 

The EAPC Paediatric Taskforce, coordinated the EAPC Paediatric Network, aims to drive developments for professionals and organisations working in children and young people’s palliative care across Europe, ensuring that palliative care for children and young people has stronger representation within EAPC so that the EAPC can provide one voice across Europe for palliative care for all age groups. The Taskforce will bring together all those working to develop and sustain children’s palliative care services, to share learning, to develop and share research and lay a strong evidence base for this small and specialised area of care.

Open meeting
An Open meeting was held on Thursday 18th May 2017. Attended by 80 people, the session revolved around three presentations followed by discussions and questions about the Taskforce. Chaired by Prof Julia Downing, the first presentation by Lizzie Chambers, Co-Chair of the Taskforce focused around the revision of the ACT Guidelines for Children’s Palliative Care. She shared the process of development and ongoing revision of the guidelines, and the key issues that were being revised and changed. Currently there is an ongoing consultation process which she encouraged the participants to take part in, and this will feed into the overall review of the guidelines. Anyone interested in contributing to this progress is welcome to make contact with Lizzie Chambers via the email address provided in the link below. 

Quality of life
Following this Dr Joanne Wolfe discussed the issues connected to quality of life in children’s palliative care, exploring some of the challenges and misconceptions, sharing the results of research and how these can be applied in practice. Dr Finella Craig (Co-Chair of the Taskforce) was the final speaker addressing the issue of transitions – how do you transition children from children’s palliative care services to adult services in a way that is empowering and enhances care? 

Second session
The second session coordinated by the taskforce was held late in the afternoon on Friday 9th May. Despite the timing, the session was well attended with over 100 participants. At the session, chaired by Dr Julia Ling (CEO of EAPC) and Lizzie Chambers (Co-Chair of the taskforce), Drs Finella Craig and Joanne Wolfe discussed issues around providing palliative care for children with Trisomy. They shared the results of a joint study done in the US and the UK. It was exciting to hear of this joint working, and good to hear the experiences of participants. 

Neonatal palliative care
Dr Ricardo Martino then introduced the topic of neonatal palliative care and explored the issues around decision making and how sensitive decisions are made and with whom. Alex Mancini, the final speaker of the session, looked at the subject of neonatal palliative care more broadly – a growing and important area of children’s palliative care.

Whilst these sessions were specifically co-ordinated by the taskforce, there were other presentations about children’s palliative care throughout the conference, for example in the sessions on palliative care in low and middle income countries, and in the session on education. There was also a wide range of posters on different aspects of children’s palliative care and it was encouraging to see the interest in children’s palliative care at the conference.

As the EAPC Paediatric Network grows, it is hoped that the presence of children’s palliative care within the conference will grow – with hopes for more sessions in the next conference in 2019, along with proposing members for the EAPC Board in the future.

To join the EAPC Paediatric Network please email EAPC@togetherforshortlives.org.uk