Rainbows Hospice for Children and Young People

Updated 14 April 2025

Rainbows Hospice for Children and Young People delivers care in the community. It is a specialist palliative care service that supports babies, children, and young people up to the age of 25 with life-limiting and life-threatening conditions. The hospice delivers a comprehensive range of services including symptom management, emergency care, short 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.

Rainbows Hospice serves children, young people, and their families across the East Midlands region, offering both planned and emergency support tailored to individual and family needs. The hospice has the capacity to provide short-break care for up to 8 children or young people at any one time, with care delivered in one of 14 individual bedrooms within designated areas of the hospice. At the time of inspection, 7 children and young people were accessing the short-break service.

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 executive directors, 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 kept and that the service continues to meet its regulatory obligations and the needs of those it serves.

Updated 14 April 2025

As part of our assessment, we spoke with 7 families and parents on behalf of their child who used the service. They spoke very positively about their experiences and shared how much they valued the support provided. Parents described the environment as warm, welcoming and child focused. Parents and family members consistently gave positive feedback. They found it friendly and uplifting, and many said it exceeded their expectations.

Families consistently described the staff as kind, compassionate and knowledgeable. There was a powerful sense that staff truly understood the needs of their child and worked in a way that respected family routines, preferences and concerns. The support was seen as thoughtful and personalised, with families saying they felt involved and listened to. Families told us the care was excellent, and a child we spoke with said they look after them and loved it there. During our visit we saw different planned activities and an impromptu karaoke party. It was fun, lively and centred to young people with excellent therapy for all.

Staff took time to get to know children well, and families said this made a significant difference. They shared examples of how staff noticed what mattered and always adapted the rooms for those who returned to the service. One child told us their room was carefully arranged with matching bedding, gentle music, and time for swimming was included as part of the person’s daily routine. The service supported these activities in a way that respected the person's needs and preferences. Parents said it felt like a ‘real’ home and appreciated the effort put into making it personal and comfortable. The care was adapted in a way that made children feel safe and comfortable. Parents described the relationships with staff as “like extended family.”

Families told us they felt supported. Support included practical help, emotional support, and simply having someone to talk to who understood their situation. Some parents described the service as a lifeline and said they did not know how they would cope without it. Support for siblings and wider family members was also highlighted as being particularly helpful.

Communication from staff was described as clear, and parents were supported to take part in care delivery. Families felt reassured that they were kept up to date and that their views were taken seriously. Contact before visits, updates during stays, and follow-ups afterwards all helped them feel involved and confident in the care provided. Some family members were supported to stay during their child’s break and were provided with a separate facility and with support such as massage therapy to support their wellbeing. We saw the registered manager was very visible during our assessment and visited a child before admission. Families reported feeling well supported by the service and noted that this level of support had been difficult to access in the community and at home. They felt that Rainbows made a significant difference through meaningful and impactful input from the service.

Leadership was very visible and approachable. Families told us they knew who to go to if they had questions, and that leaders took the time to speak with them directly. Parents and families told us that leaders made an effort to get to know their child, which gave them confidence that the service was well-organised and focused on what mattered most.

Overall, families and parents described a service that was centred around children and their families, where they felt welcome and would be lost without Rainbows. Parents said that “Rainbows is life-changing,” “full of love,” “a break with support not only for my child but for me” and “couldn’t ask for better.”

The service received a wealth of positive feedback and valuable suggestions from children, young people, and their families through various channels, including feedback cards, whiteboards and letters. We saw active participation from families and parents, which showed strong engagement and partnership in shaping the service. This open and inclusive approach fostered a culture where the voices of those cared for were genuinely heard and valued, driving ongoing improvements and ensuring care remained responsive to individual needs. Staff told us they were proud to work for Rainbows, and the most important element was the children they cared for.