In the days before her death, six-year-old Flora Gentleman was in pain and visibly distressed. But because she was autistic and non-verbal, she could not tell her parents what was wrong.
After four years of living with neuroblastoma, an aggressive form of cancer, Flora had stopped responding to treatment. By December 2024 she was receiving palliative care at Edinburgh’s Royal Hospital for Children and Young People.
Despite being given the highest possible dose of pain relief, her mother, Stephanie Kent, said she could see her daughter “gasping and wincing in pain”.
According to Stephanie, disagreements between medical teams over how best to manage Flora’s symptoms erupted into a heated discussion at her daughter’s bedside.
The oncology team said the kindest route was to sedate Flora, but the palliative care team wanted to give the pain relief more time to take effect. Stephanie said the conversation became so “insensitive” that the group of medics had to leave the room.
“It was barbaric,” said Stephanie. “It felt like we were going in circles, right next to Flora’s bed. The level of unprofessionalism was diabolical.”
After Flora’s death, Stephanie complained to NHS Lothian about the care she had received. The health board upheld the complaint, partly because of the distress the family had felt as a result of divisions between medical teams.
Scotland has spoken to several families who have raised concerns over palliative care at the hospital.
One family described the treatment they received as “unprofessional” while another said “it feels like they are not taking the concerns of parents seriously.”
NHS Lothian said it had carried out a full investigation into Flora’s care, and that recommendations had been acted upon and communicated to her family. More broadly, it said its complaints process involves “thorough and robust” investigations with clinical teams.