My dying daughter gasped in pain while medics argued at her bedside
Families have raised concerns over palliative care at Edinburgh's children's hospital.
By BBC News
Families have raised concerns about palliative care at Edinburgh’s Royal Hospital for Children and Young People after the death of six-year-old Flora Gentleman.
Flora had lived with neuroblastoma, an aggressive form of cancer, for four years. She was also autistic and non-verbal, meaning she could not tell her parents when she was in pain.
By December 2024, treatment was no longer working and Flora was receiving palliative care. Her mother, Stephanie Kent, said her daughter remained visibly distressed despite receiving the highest possible dose of pain relief.
Ms Kent said disagreements between the oncology and palliative care teams broke out at Flora’s bedside over how her symptoms should be managed. The oncology team believed sedation would be the kindest option, while the palliative care team wanted to give the pain relief more time to work.
She said the discussion became so insensitive that the medical staff had to leave the room. Ms Kent then spent about 45 minutes away from Flora’s bedside continuing the conversation about her daughter’s care.
The lead oncologist later took over Flora’s care. Ms Kent said Flora became peaceful and was able to sleep within 24 hours. She died two days later.
Following Flora’s death, Ms Kent complained to NHS Lothian. The health board upheld the complaint in part, accepting that the family had been distressed by visible divisions between the clinical teams and had not been sufficiently involved in decisions about Flora’s care.
NHS Lothian has since identified eight major learning outcomes following a review of the case.
The BBC has also spoken to other families who raised concerns about palliative care at the hospital. One described the treatment they received as unprofessional, while another said they did not feel parents’ concerns were taken seriously.
NHS Lothian said a comprehensive investigation into Flora’s care had been completed, with recommendations implemented and shared with her family. It said its complaints process involved thorough investigations with the relevant clinical teams.