This webinar is organised by the NIHR ARC Palliative and End of Life Care National Leadership forum, part of a series featuring insights and discussions with leading experts.
It will be chaired by Professor Morag Farquhar, University of East Anglia co-lead of the National NIHR ARC Leadership palliative and end of life care (PEoLC) and lead of the PEoLC theme for the ARC East of England.
Professor Lorna Fraser
Lorna Fraser joined Kings College London as professor of palliative care and child health in November 2022 and is a current NIHR Research Professor. Her background is in clinical paediatrics and her research focuses on children and young people. She was the founding director of the highly successful Martin House Research Centre a multi-disciplinary centre for research on the care and support of children and young people with life-limiting conditions, their families and the workforce that care for them. Her main area of expertise is the use of routine data to influence policy and address healthcare inequalities. Her work has influenced national service specifications, children's palliative care funding, and vaccine prioritisation for children with COVID
Julie Russell
Julie Russell is an illustrator, teacher, and lived-experience advocate from Essex, UK. Julie has been married to Iain for over 25 years and is a mother to a teenage son called Dan and a bereaved parent to a toddler called Fraser. Julie's family used paediatric palliative care services at Christopher’s Hospice (part of Shooting Star Chase) in Guildford, Surrey, during Fraser's (their first son's) life. The family received respite care and weekly support including hydrotherapy, music therapy, and play groups. Following Fraser's passing, Julie and her family have maintained a connection with Fraser's music therapist, Vicky Kammin, collaborating on a book about families' experiences with music therapist practitioners in children's palliative care settings, which has recently been released by Routledge. Julie is a member of Family Advisory Boards at the Paediatric Palliative Care Research Group, University of York and Cicely Saunders Institute, King's College London, providing input into research. She also participates in other paediatric palliative care initiatives across UK academic institutions.
Victora Fisher is a research associate at the Cicely Saunders Institute at King's College London. She completed her PhD in 2024 which was focused on the health and caregiving of experiences of parents of children with a life-limiting condition, with an emphasis on exploring the perspectives of fathers. Victoria is a qualitative researcher working to improve care and support for parents of children with a life-limiting condition through intervention development and implementation.
The presentations will be followed by a Q&A session.