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Six-year-old Flora Gentleman, who lived with neuroblastoma for four years and was autistic and non-verbal, experienced significant pain and distress in the days leading up to her death. Despite receiving palliative care and the highest doses of pain relief at Edinburgh’s Royal Hospital for Children and Young People, her mother, Stephanie Kent, observed her daughter struggling visibly. Flora had ceased responding to treatment by December 2024 and was under the care of multiple medical teams. However, disagreements arose between the oncology team, which favored sedation, and the palliative care team, which preferred to allow pain relief more time to take effect. This conflict escalated at Flora’s bedside, with Stephanie describing the interaction as “barbaric” and highlighting the unprofessional atmosphere that forced the medical staff to step out of the room.
Stephanie Kent later lodged a formal complaint with NHS Lothian regarding the care Flora received, which was upheld partly due to the distress caused by the evident tension between the hospital teams and their failure to involve the family adequately in decision-making. She recounted how a member of the palliative care team made insensitive comments, including saying Flora was on so much pain medication it “would knock an elephant out” and that it would “chill her out.” These remarks added to the trauma of witnessing her child suffer while the two teams could not reach agreement. Following this confrontation, Stephanie had to leave the room for 45 minutes, during which her daughter was left vulnerable. Eventually, the lead oncologist took charge of Flora’s care, leading to a peaceful state until her passing two days later.
In its response to the complaint, NHS Lothian admitted that holding such a discussion beside Flora’s bedside was inappropriate and acknowledged the insensitive nature of some comments made by staff members. Although the individual involved did not recall the exact quotes, they recognized that the remarks might have come across as unprofessional. The health board’s review of Flora’s care identified eight major lessons, including a need for better coordination between clinical teams and improved sensitivity to the particular needs of neurodivergent patients. While Stephanie views these findings as a start, she advocates for broader reforms in children’s end-of-life care, such as the establishment of dedicated palliative care wards.
Other families have also expressed concerns about care at the Royal Hospital for Children and Young People. For example, Jamie Walker, whose 17-year-old daughter Sophie died on the same ward in July 2024, described difficulty navigating the hospital’s complaints process. Despite submitting detailed concerns, the family’s complaint was closed after NHS Lothian indicated they had already been given sufficient chances to raise issues. The matter was then taken up by the Scottish Public Services Ombudsman, which is currently investigating, alongside a separate inquiry by the Scottish Fatalities Investigation Unit. Jamie criticized the lack of seriousness applied to parental concerns, emphasizing the emotional challenge of revisiting such traumatic experiences.
The Scottish Public Services Ombudsman noted increased demand has led to delays in complaint handling but emphasized prioritizing vulnerable individuals and urgent cases. Families like Steph Kemlo, whose daughter Faith passed away in 2025, described the complaints procedures as “incredibly difficult” due to the raw emotions involved. Children’s hospices chief executive Rami Okasha stressed the urgent need to improve hospital environments to provide compassionate end-of-life care comparable to that offered in hospices. NHS Lothian expressed condolences to affected families and reiterated its commitment to thorough investigations and ongoing communication with families. The Scottish government has pledged support for NHS boards and hospice organizations to develop a new service plan focused on delivering appropriate palliative care to children and their families
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