Demelza, Hospice Care for Children - Kent

Updated 28 April 2025

We carried out a comprehensive on-site assessment of Demelza Hospice Care for Children - Kent on 28 May and 5 June 2025. The service is run by Demelza House Children’s Hospice.

We completed this assessment because of the length of time since the previous assessment.

We inspected this service using our single assessment framework and looked at all the key questions and all quality statements. We visited inpatient areas and spoke with 10 families/carers and reviewed 6 patient records. We spoke with 20 staff members, including leaders, nurses, community staff, nursing associates, health care assistants, housekeepers, administrators, volunteers, estates, and specialist staff, such as safeguarding leads.

At our last assessment we rated the service as outstanding under a different methodology. At this assessment we found the service was still outstanding overall.

We found that Demelza – Kent continued to deliver excellent, individualised care to babies, children, young people, and their families. The service placed a profound emphasis on the voices of patients and families, using their feedback to shape and improve care delivery.

Babies, children, young people, and their families were always at the heart of the service.

Demelza Hospice Care for Children - Kent is a registered charity that provides specialist care to babies, children, and young people with life limiting conditions from birth to 18 years and a transition service for young people from 18 years old to 25 years old. The hospice provides a comprehensive range of services including symptom management, emergency care, short care breaks, end of life care and bereavement support. Care is provided not only within the hospice itself but also in hospital settings, in the family home and across the wider community, ensuring families receive flexible and responsive care, wherever it is needed.

The hospice cares for babies, children, young people, and their families across Kent and Medway, offering both planned and emergency support tailored to individual and family needs.

The service provides holistic clinical care and emotional support to families, including specialist therapies, transitional care for young adults, and post-bereavement support. This reflects a whole-family, whole-life approach to care. Staff from all specialist areas communicate effectively, working together to meet each young person’s needs, from cultural considerations to coordination with community support staff.

The quality and safety of the service is overseen by the Board of Trustees, the senior leadership team, and specialist staff, who received regular assurance through clinical governance reports, audits, and performance monitoring. The Board is accountable for ensuring that high standards of care are maintained and that the service continues to meet its regulatory obligations and the needs of those it serves.

At the time of the assessment the hospice had 10 inpatient bedrooms. However, occupancy was limited to 5 to allow for safe, one-to-one care and ensure capacity for emergency admissions.

Updated 28 April 2025

We spoke with 10 families on behalf of their children who used the service. Families were consistently positive regarding their experiences. They shared how much they valued the support provided by the service. Family members told us the service exceeded their expectations.

Staff treated patients, families and carers with compassion and kindness, respected their privacy and dignity. We observed care delivery and saw staff engaging positively with children and young people.

Children, young people, and their families shared a wealth of positive feedback and thoughtful suggestions through several channels within the service. Families and parents took an active role in shaping the service, demonstrating full engagement and true partnership. This open, inclusive approach created a culture where every voice was heard and valued, driving continuous improvement and ensuring care stayed responsive to individual needs. Staff spoke with pride about working for the service, telling us that the heart of everything they do was the children they care for. Families emphasised that the service was “full of life.’’

Children, young people, and their families were supported to be actively involved in making decisions about the care they received. Families and carers received accurate and up-to-date information from staff about care and treatment in a way they understood. The service anticipated the needs of children, young people and family needs and recognised distress and discomfort at the earliest stage. It offered sensitive and respectful support and care.

Families told us they felt supported emotionally and physically. There was practical support for families as well as a range of emotional support. This included bereavement groups, befriending services and simply having someone to talk to who understood their situation. Support for siblings and wider family members was also highlighted as being particularly helpful.

Leaders were highly visible and always approachable. Families told us they knew exactly who to turn to with questions, and leaders took time to speak with them personally. Families and carers shared how leaders made a genuine effort to know their child, giving them confidence that the service was well organised and focused on what truly mattered most.