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.

BBC 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.

In her complaint, Stephanie said that members of the oncology and palliative care teams began arguing by Flora’s bedside while she was in distress.

She said a member of the palliative care team made a number of upsetting remarks, which included “Flora is on such a high dose of pain relief that it would knock an elephant out”, and that this medication would “chill her out”.

“I felt like I was going crazy, saying ‘I know something’s not right here’ and you feel like you are not being taken seriously,” said Stephanie.

“As if watching your child die isn’t traumatising enough, you also have to watch her suffer while these two teams that should be helping ease her pain can’t even see eye to eye.”

After medical staff left the room, Stephanie said she had to leave Flora’s bedside for 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.”

Following the argument, the lead oncologist took over Flora’s care. Within 24 hours, Stephanie said Flora was peaceful and able to sleep. She died two days later.

NHS Lothian upheld Stephanie’s complaint on the grounds that the family were left out of decision making and had experienced distress due to “visible” divisions between clinical teams.

In an official response to the complaint, seen by BBC News, the health board acknowledged Flora’s family was affected by comments made by the palliative care team that were perceived as “insensitive”.

It also acknowledged that it was inappropriate for the meeting to have taken place beside Flora’s bed and said a further conversation took place outside her room.

The staff member alleged to have made the two inappropriate comments said they did not recall making the remark about pain relief dosage, but acknowledged that if they had, it would have come across as insensitive or unprofessional.

In reference to the second comment, they said it was never meant to cause offence.

NHS Lothian has identified eight “major learning outcomes” following a review of Flora’s care.

They include the need to better coordinate working between teams, greater consideration of how Flora’s neurodiversity affected her acre and concerns that aspects of staff communication caused distress to the family.

Stephanie said this was a starting point but wider improvements could be made to end-of-life care for children in Scotland.

These include specific wards for children’s palliative care.

Over 70% of children and young people with serious health conditions or receiving palliative care in Scotland die in a hospital setting, according to Public Health Scotland.

BBC Scotland also spoke to Jamie Walker whose 17-year-old daughter Sophie died in the same ward in July 2024.

The family submitted a complaint in January 2026. NHS Lothian initially said it would investigate and respond to seven points raised under stage two of its complaints procedure within two weeks.

However, 11 days later, the family received another letter saying they had been given multiple opportunities to complain within the relevant timeframe. The complaint was then closed.

The family referred the matter to the Scottish Public Services Ombudsman (SPSO), which is investigating.

There is also a separate investigation by the Scottish Fatalities Investigation Unit into Sophie’s death.

Jamie said NHS Lothian underestimated how difficult it could be for bereaved parents to navigate the complaints process.

“It is so hard. You are sitting there and reliving the worst thing that has ever happened to you, word by word,” he said.

“It feels like they are not taking the concerns of parents seriously.”

NHS Lothian said there had been a review of care and treatment of Sophie’s case which included contact with her parents. It said this was to “ensure their experiences were heard and reflected as part of this review”.

The SPSO said it could not comment on individual cases but that a “significant and sustained” increase in demand had led to delays in some complaints being allocated to a reviewer.

A spokesperson said: “We continue to prioritise people who are vulnerable, complaints that are urgent or where there is a significant public interest.”

Steph Kemlo whose daughter Faith spent the weeks leading up to her death in the Lochranza Ward in September 2025 said the complaints process was “incredibly difficult” because “everything is still so raw.”

BBC Scotland understands there are another two families with concerns over palliative care received at the Royal Hospital of Children and Young People but they do not feel ready to share the experience.

Rami Okasha, the chief executive of Children’s Hospices Across Scotland (Chas), said there was “a lot of work that needs to be done” to create a suitable environment for end-of-life care in children’s hospitals.

He said: “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.

“It’s so important because you’ve got one chance to get this right for these families.”

NHS Lothian said: “We extend our deepest condolences to the families of both Flora and Sophie and apologise for any additional distress they experienced at an already difficult time.

“The complaints process involves thorough and robust investigations with our clinical teams. Where we are unable to respond within a given timeframe, we ensure families are kept informed of the progress of their case. NHS Lothian’s complaints handling process is in line with both NHS Scotland and SPSO legislation.”

Health Secretary Angela Constance said the Scottish government was providing support to NHS boards and Chas in developing a new service plan to ensure children and families receive the palliative care that is right for them.