The mother of a six-year-old girl who died of cancer at Edinburgh’s children’s hospital has described watching her daughter “gasping and wincing in pain” while two teams of doctors argued beside her bed about how to treat her.

Flora Gentleman, who was autistic and non-verbal, had lived with neuroblastoma, an aggressive childhood cancer, for four years. By December 2024 she had stopped responding to treatment and was receiving palliative care at the Royal Hospital for Children and Young People in Edinburgh.

Her mother, Stephanie Kent, complained to NHS Lothian after Flora’s death. The health board upheld the complaint, accepting that the family had been left out of decisions and had been distressed by “visible” divisions between clinical teams. The case was first reported by BBC Scotland News.

‘We were going in circles’

Ms Kent said that, despite Flora receiving the highest possible dose of pain relief, it was obvious her daughter was suffering but could not say what was wrong.

According to her account, the oncology team believed the kindest option was to sedate Flora, while the palliative care team wanted to give the existing pain relief more time to work. The disagreement turned into a heated discussion at the bedside, and the medics were eventually asked to leave the room.

“It was barbaric,” Ms Kent said. “It felt like we were going in circles, right next to Flora’s bed. The level of unprofessionalism was diabolical.”

She said a member of the palliative care team told the family Flora was on such a high dose of pain relief that “it would knock an elephant out”, and that the medication would “chill her out”. She then had to leave her daughter’s side for about 45 minutes to continue the conversation about her care.

“Anything could have happened in that time,” she said. “She was only six years old, lying there in pain. All she wanted was her mum and dad.”

After the row, the lead oncologist took over Flora’s care. Within 24 hours, her mother said, Flora was peaceful and able to sleep. She died two days later.

What the health board accepted

In its formal response to the complaint, NHS Lothian acknowledged that comments from the palliative care team had been perceived as insensitive and that it had been inappropriate to hold the meeting beside Flora’s bed.

The staff member said to have made the remarks told the investigation they did not recall the comment about the dosage, but accepted that, if it had been made, it would have come across as insensitive or unprofessional. They said the second remark had never been meant to cause offence.

A review of Flora’s care identified eight “major learning outcomes”. They include better co-ordination between teams, more attention to how a child’s neurodiversity affects their care, and concerns that the way some staff communicated had distressed the family.

Ms Kent said the findings were a starting point, but called for wider changes to end-of-life care for children across Scotland, including dedicated children’s palliative care wards. According to Public Health Scotland, more than 70% of children and young people with serious health conditions or receiving palliative care in Scotland die in hospital.

Other families come forward

Flora’s is not the only case. Jamie Walker’s daughter Sophie, 17, died on the same ward in July 2024. The family lodged a complaint in January 2026, and NHS Lothian first said it would respond to seven points within two weeks. Eleven days later, the family received a second letter saying they had already had several opportunities to complain within the time allowed, and the complaint was closed.

The family has taken the matter to the Scottish Public Services Ombudsman, which is investigating. The Scottish Fatalities Investigation Unit is also examining Sophie’s death.

“It is so hard,” Mr Walker said. “You are sitting there and reliving the worst thing that has ever happened to you, word by word. It feels like they are not taking the concerns of parents seriously.” NHS Lothian said a review of Sophie’s care had included contact with her parents so that their experiences were heard.

Steph Kemlo, whose daughter Faith spent the weeks before her death in the hospital’s Lochranza Ward in September 2025, said the complaints process was “incredibly difficult” because “everything is still so raw”. Two further families are understood to have concerns but do not yet feel able to speak publicly.

The ombudsman said it could not comment on individual cases, but that a “significant and sustained” rise in demand had delayed the allocation of some complaints. It said it continued to prioritise vulnerable people, urgent cases and those of significant public interest.

Calls for change

Rami Okasha, chief executive of Children’s Hospices Across Scotland (Chas), said much work was needed to create the right environment for end-of-life care in children’s hospitals. “Children who need to be in hospital at the end of life should get the same compassionate, gentle care as if they were in one of Chas’s hospices,” he said. “You’ve got one chance to get this right for these families.”

NHS Lothian extended its “deepest condolences” to the families of Flora and Sophie and apologised for any additional distress. It said its complaints process involved thorough investigations with clinical teams and complied with NHS Scotland and ombudsman rules.

Health Secretary Angela Constance said the Scottish government was supporting health boards and Chas to develop a new service plan so that children and families receive the palliative care that is right for them.