Families Voice Concerns Over Palliative Care at Children's Hospital

Several families have come forward to express serious concerns regarding the palliative care provided at Edinburgh's Royal Hospital for Children and Young People. These accounts detail instances of medical teams arguing at a child's bedside, perceived insensitivity from staff, and difficulties within the hospital's complaints process, leading to prolonged distress for grieving families.

One particularly harrowing account comes from Stephanie Kent, whose six-year-old daughter Flora died in December 2024 after a four-year battle with neuroblastoma. Despite receiving the highest dose of pain relief, Flora visibly suffered, and Kent reported that medical staff engaged in a heated dispute at her daughter's bedside over her care. The oncology team favored sedation, while the palliative care team advocated for more time for the pain medication to work. Kent described the argument as "barbaric" and "insensitive," leading to the medical group leaving the room.

NHS Lothian upheld Stephanie Kent's complaint, acknowledging that the family experienced distress due to divisions between clinical teams and insensitive remarks made by a palliative care team member. One comment, suggesting Flora was on a pain relief dose that "would knock an elephant out," was particularly upsetting. The health board stated that while the staff member did not recall the specific remark about the dosage, they acknowledged it could have been perceived as insensitive. The board also noted it was inappropriate for the discussion to occur at Flora's bedside. Following the intervention of the lead oncologist, Flora became peaceful and died two days later.

NHS Lothian identified eight key learning outcomes from Flora's case, emphasizing the need for improved inter-team coordination, greater consideration of neurodivergent children's needs, and better staff communication to prevent family distress. Stephanie Kent suggested that wider improvements are needed for children's end-of-life care in Scotland, including dedicated palliative care wards.

Another family, that of 17-year-old Sophie Walker who died in July 2024, has also raised concerns. Their complaint to NHS Lothian was initially accepted but later closed after the family was informed they had exceeded the timeframe for formal complaint submission, despite efforts to engage within a reasonable period. This matter is now being investigated by the Scottish Public Services Ombudsman (SPSO).

Jamie Walker, Sophie's father, described the complaints process as extremely difficult, forcing bereaved parents to relive traumatic experiences. He feels that parental concerns are not being taken seriously by the health board. The SPSO confirmed that increased demand has led to delays in complaint allocation, but urgent and significant public interest cases are prioritized.

Steph Kemlo, whose daughter Faith died in September 2025, echoed the sentiment that the complaints process is challenging when "everything is still so raw." BBC Scotland is aware of at least two other families with unresolved concerns about palliative care at the hospital who are not yet ready to share their experiences.

Rami Okasha, chief executive of Children's Hospices Across Scotland (Chas), stated that significant improvements are necessary to create a supportive environment for end-of-life care in children's hospitals, ensuring children receive compassionate care comparable to hospice settings.

In response, NHS Lothian extended its condolences to the families of Flora and Sophie, apologizing for any additional distress caused. The health board asserted that its complaints process is thorough and in line with national legislation, and that families are kept informed of case progress. The Scottish government is reportedly supporting NHS boards and Chas in developing a new service plan to improve pediatric palliative care.