Rainbows Hospice for Children and Young People

On this page

• Overview
• Person-centred Care
• Care provision, Integration and continuity
• Providing Information
• Listening to and involving people
• Equity in access
• Equity in experiences and outcomes
• Planning for the future

Rainbows Hospice consistently delivered care that was compassionate, timely, and tailored to the unique needs of children, young people, and their families. The service worked collaboratively with external partners and carers to plan and deliver care that respected individual preferences and circumstances. Assessments were thorough and person-centred, enabling staff to respond quickly and effectively. Families were actively involved in care decisions, and communication was clear and supportive. Staff demonstrated sensitivity, flexibility, and a deep understanding of each child’s journey, ensuring care was both meaningful and inclusive.

This service scored 93 (out of 100) for this area. Find out what we look at when we assess this area and How we calculate these scores.

We saw the service respond thoughtfully when a young person wanted to watch live cricket during their stay. Staff collaborated with digital teams to adjust streaming access, allowing all children, young people, and families to enjoy TV content of their choice safely in their own rooms. Spiritual and religious care was delivered with great sensitivity and personal attention, supporting families through complex care and emotions. This support was available not only in the hospice but also in homes and hospitals, with plans to extend into community hubs, reflecting a fully comprehensive approach.

We viewed during the assessment that the service used a compassionate and coordinated approach to care for a baby who was transferred from hospital to the hospice for withdrawal of ventilation. The family wished to create lasting memories at the seaside before the transfer, and the Clinical Nurse Specialist arranged transport and went with them. After spending time together, the baby was brought to the hospice where ventilation was withdrawn. When she did not die as expected, the Specialist Palliative Care Team worked closely with the hospital to plan for her discharge home with hospice support. She was discharged 10 days later and continued to receive care from the hospice team in the community.

The hospice recognised the importance of meeting the spiritual needs of children, young people, and their families, especially during times of crisis when profound questions often arose. The hospice had 1 spiritual care worker who provided support 3 days per week. 

This spiritual care service offered:

• 1:1 Support: Person centred spiritual and religious care for children, young people, and families.

• Spiritual Play Activities: Creative, accessible activities to help non-speaking children to explore their spiritual needs through story, song, and activities. 

• Space for Reflection and Prayer: Dedicated physical space and resources were available to support with spiritual and religious practice whilst at the hospice.

• Support and Training for Staff: The hospice provided guidance and training to help staff understand and deliver spiritual care. Spiritual Care was also represented as part of the Values, Culture, and Inclusion Group, this helped to embed spiritual awareness throughout the organisation. 

• Holistic Needs Assessment and MDT representation: Spiritual needs were considered as part of every child’s health needs assessment and in weekly Multi-Disciplinary Team meetings.

• Spiritual networks: The hospice ran a network of professionals in paediatric palliative care who were committed to growing spiritual care provision within their organisations and a hospice-wide spiritual care group ensured that the voice of the wider team is included in the work.

• Bereavement Support: Spiritual care contributed to bereavement support, including remembrance events and bereavement walks, in collaboration with the Bereavement Lead. 

The hospice had access to faith representatives to enable blessings or rituals surrounding end of life'

All spiritual care at Rainbows was delivered in line with the UK Board of Healthcare Chaplaincy guidelines. Spiritual care at Rainbows was distinctive as they offered dedicated spiritual support as an integral part of holistic care.

Staff used resources to reduce patient anxiety and increase their understanding of clinical procedures. For example, a teddy bear equipped with a breathing tube attached to a ventilator was used to demonstrate equipment and reduced barriers to communicating with children.

Volunteers actively took part in fundraising activities such as the Rainbows Golf Charity Day and the Derby Cathedral abseil, with 1 volunteer expressing how much they loved the opportunity to give back. This reflected the service’s inclusive and community-driven culture, where volunteers were seen as integral members of the wider Rainbows family.

The youth and transition team collaborated with people flexibly and in a system integrated with community services and other providers. Youth workers provided 1-to-1 support to people in the community, including their homes, and in hospital inpatient settings. They had set up working relationships with hospital nurses and clinical teams to help visits and ensure care and support was coordinated.

The education lead nurse delivered training to the catering team on providing appropriate meals for people with dysphagia, food intolerances and allergies, and swallowing needs. A new catering manager was developing an enhanced menu for children based on international research.

The Rainbows Counselling Service provided compassionate and flexible support to families across the East Midlands, offering face-to-face, telephone, and online sessions to ensure accessibility regardless of location. The service was delivered by a qualified, experienced, and registered part-time counsellor, supported by 2 student counsellors.

Families particularly valued the flexibility of the service, which adapted to their individual schedules—recognising the emotional and practical pressures they faced, particularly before bereavement. This person-centred approach stood in contrast to more rigid counselling structures often found elsewhere. The counselling service specialised in anticipatory grief and bereavement following the loss of a child, but was also made available to young adults, adult siblings, and grandparents. In addition to individual therapy, the counsellor co-facilitated a Bereaved Parents Group alongside the Bereavement Support Lead, combining therapeutic input with peer support. This holistic and responsive model ensured that families received prompt, tailored, and specialist emotional care during some of the most difficult periods in their lives.

The music therapy team-built evidence-based practice into their services. For example, they knew blood tests taken from pricking the heels of infants led to negative feelings about their feet. To counteract this, the therapy team played music proven to reduce blood pressure and heart rate during blood tests, to reduce anxiety.

We saw that people were provided with a wide range of accessible information about their care, treatment, and support. This included guidance on how to keep themselves safe and how to report any concerns. Information about bereavement support at Rainbows was also available, along with shared letters and personal journeys from others who had used the service, helping to build trust and understanding. The service’s website was accessible for families and parents to find information about the service, resources and support.

Leaflets and written materials were available throughout the environment, providing clear information for families and carers. Feedback from families was actively looked for, and results were shared using “You Said, We Did” displays, showing a responsive and transparent culture of handling feedback. The service’s website clearly explained the range of services provided, and information was made available in other languages to ensure inclusivity for all families.

The service showed an open, and honest learning culture that actively enabled young people, parents, and families to share feedback, ideas, and raise concerns or complaints about care, treatment and support. Young people and families told us they felt listened to and respected, with 7 families specifically highlighting how involved they felt in decisions about their child’s care. They described the support provided by the service as “extremely helpful” and “reassuring.”

From information provided, we saw that in the period 1 May 2024 to 31 May 2025, there had been 67 compliments, 3 concerns and 7 complaints made.

The service listened openly and responded through its “You Said, We Did” approach, clearly showing how feedback led to meaningful change. For example, staff uniforms were adapted to better reflect their roles while also helping families and young people feel more connected, promoting both clarity and a sense of belonging within the care environment.

Staff were able to explain feedback was managed through a robust and well-established system. During our assessment, the service had received 2 complaints, and they were immediately resolved. Staff showed a clear understanding of the process for reporting and investigating complaints, using the electronic system to ensure all feedback was accurately recorded and addressed. Families, including parents, were informed and felt confident in their ability to raise concerns or complaints when necessary. Learning from complaints and feedback was routinely shared during multidisciplinary team (MDT) meetings and specialist palliative care team days, fostering a culture of openness, reflection, and continuous improvement within the service.

Young people who attended recently formed youth groups gave positive feedback about the opportunity to spend social time with others living with similar conditions. They described improved mental health and wellbeing as a result and the youth team was working to expand the scope of this work to meet demand.

Staff said the provider was responsive to providing new resources requested by people to improve their experience. For example, the youth team secured video games requested by people and a digital tablet equipped with art software.

Staff championed young people to be empowered and confident in making their own decisions. This included where young adults wished to make choices at odds with their culture or religion.

Rainbows Hospice set up Community Hubs in different areas across the East Midlands. These Hubs were created to give children, young people, and their families support in a relaxed and friendly setting. Activities included emotional and social support, creative sessions, and help with managing symptoms.

The service shared feedback from families who took part and used their ideas to improve future Hubs. Families said they enjoyed the chance to meet others in similar situations, talk to staff, and take part in fun and supportive activities. Many said the Hubs helped their children feel included and make friends.

Families described the staff as kind and understanding, and said the activities were enjoyable and welcoming. Some asked for more options for teenagers or very young children, and this feedback was taken on board. When families needed extra support—such as talking about growing up or moving into adult services—specialist staff were available and helpful.

Overall, families rated the Hubs very highly. They suggested offering more sessions during school holidays and promoting them more widely so more people could benefit. The service listened to this feedback and used it to plan ahead. These sessions helped families feel supported, less alone, and part of a caring community.

The service offered care flexibly to meet people’s needs and had improved accessibility in response to feedback and growing demand. This included expanding out-of-hours clinical services to ensure families received support when they needed it most. Staff focused on fair access across the service, adapting both the environment and equipment to meet changing needs.

A community cultural link worker played a role in supporting babies, children and young people and their families from diverse cultural backgrounds, ensuring that their cultural, religious, and social needs were respected and met. The hospice promoted effective communication between staff and families, ensuring that language barriers were addressed, and cultural differences understood. The hospice provided ongoing cultural learning to family support to enhance their understanding of diverse cultural background and their ability to provide culturally competent care to families they were supporting. The link worker provided explanations or translation services as needed to ensure clear and accurate communication and advocate for the cultural and religious needs of children and families. Ensuring these needs were integrated into care plans and practices and that families were connected with relevant community resources and support networks that align with their cultural background. The link worker supported all staff to create an inclusive and culturally sensitive environment. 

A Community Cultural hubs service was set up to encourage access to Rainbows services from diverse communities. The hubs offered a warm and welcoming space where parent/carers could connect with other parents who understood the unique challenges and experiences of raising children within a cultural context. The hub was a safe, nurturing environment for parents/carers to share stories, challenges, and triumphs and to have meaningful connections with others who shared their experiences

Dignity and respect were embedded in the service's culture and consistently showed in both policy and practice. Staff at all levels showed a clear and sustained commitment to valuing every individual—whether a child, young person, family member, staff member, or volunteer —regardless of background, identity, or personal circumstances. This approach was integral to the organisation’s equality, diversity, and inclusion (EDI) framework and shaped the compassionate, person-centred care that was clear throughout the service. Staff recognised and respected people’s individual needs. They delivered personalised care that reflected people’s preferences, beliefs, and customs. Care and support were provided with sensitivity, and staff showed cultural awareness in their interactions. The environment promoted equality and inclusivity, ensuring that all individuals felt safe, welcomed, and respected.

Rainbows Hospice involved staff and developed a 5-year strategy with clear plans for Equality, Diversity, and Inclusion (EDI). Staff viewed this plan as a clear opportunity to make sustainable change and ensure Rainbows Hospice became a place where everyone felt welcome, valued, and treated fairly. Staff told us they felt the strategy was achievable, realistic, and wanted to do more and be the best they could. They felt confident that the organisation had clear goals and the necessary resources to successfully deliver on its plans. This positive outlook supported ongoing commitment and motivation across the team. Equality meant giving everyone the same chances. The strategy was built with clear goals and Key Performance Indicators (KPIs) to track progress. The hospice had increased the diversity of their decision-making panels by 75%, helping to bring in wider perspectives and lived experience. They had also appointed an Inclusion Specialist to guide their efforts and ensure best practice.

Staff ran regular training, listened to feedback from children, families, and staff, and collected data to help see where they could improve. This was through events and learning from the ones who cared for children.