Rainbows Hospice for Children and Young People

On this page

• Overview
• Assessing needs
• Delivering evidence-based care and treatment
• How staff, teams and services work together
• Supporting people to live healthier lives
• Monitoring and improving outcomes
• Consent to care and treatment

Care and treatment at Rainbows Hospice were consistently effective, evidence-based, and tailored to individual needs. Staff used the right processes, equipment, and assessments to deliver measurable outcomes and drive continuous improvement. Families were actively involved in care planning, ensuring a person-centred approach. Staff were well-trained, understood consent and capacity, and safeguarded patients’ interests. Children with communication needs were supported through inclusive tools and resources. Complimentary therapies enriched care, reflecting a holistic and responsive model that empowered families and upheld clinical excellence.

This service scored 88 (out of 100) for this area. Find out what we look at when we assess this area and How we calculate these scores.

Children and Young People (CYP) had their care needs assessed and managed. Care records we viewed showed CYP and their families were actively involved in these assessments. A wide range of risk assessments was undertaken on admission and risks were continuously assessed and updated as things changed. Examples of these included tissue viability and mouth care assessments. Families were consulted about their preferred place of care, which was recognised as an important part of person-centred planning. One family shared that they were pleased all members had agreed on Rainbows as the chosen place of care. Audits for both of these showed effective compliance (with mouth care audits showing 98% compliance for June 2025, and tissue viability audits showing 99% compliance for June 2025, both above the target of 95%).

Multidisciplinary meetings took place weekly and involved input from a diverse range of services, including music therapy and the youth team. This supported seamless care across all aspects of the service.

Patients who attended the hospice for short breaks were admitted with existing care plans, coordinated by a hospital or community team. Where staff found the patient’s needs had changed, such as a reduction in swallowing ability, they consulted with community colleagues to conduct new assessments. Dietitians and speech and language therapists took a lead role involving young people and parents.

Staff also showed best practice in recording PRN (as needed) medications and completing intervention sheets, helping to keep care safe and correct.

Audits for record keeping showed satisfactory compliance (with audits showing 92% compliance for June 2025, just below the target of 95%).

The service worked with families, parents, and young people. There was a strong and well-embedded approach to advance care planning, ensuring that each child and young person’s medical needs, personal wishes, and family values were sensitively explored and clearly documented. Plans were developed collaboratively with families and the wider multidisciplinary team, including preferences around symptom management, place of care, organ and tissue donation, and meaningful experiences at the end of life. This person-centred approach enabled staff to deliver risk assessed care that was anticipatory, respectful, and aligned with what mattered most to each family, particularly at times of crisis or transition. Communication aids and a sign language interpreter were available to support people to express themselves.

Before a child or young person was admitted to Rainbows, a detailed assessment was conducted to understand their medical, emotional, and personal needs. This assessment helped the care team gather important information from the family, doctors, and other professionals. After the assessment, a care discussion took place between the staff and the family to talk about the child’s needs, preferences, and goals. Parents told us these discussions ensured that everyone took part in planning the care and that the child received the right support. The outcome was a tailored care plan that respected the wishes of the child and their family and was updated as needs changed.

Children and young people were provided with care that followed national guidance and best practice. This included but were not restricted to The National Institute for Health and Care Excellence (NICE) guidance NG61: in relation to end of life care for infants, children, and young people with life-limiting conditions, Together for Short lives Standards Framework, NHSE Core20Plus, Royal colleges and association for palliative medicine guidance.

Compliance with national guidance was routinely audited and audit outcomes were used effectively to improve outcomes and the quality of the care delivered. The service also focused on adapting clinical pathways to improve the management of long term conditions such as dysphagia, epilepsy.

The clinical education team used established international tools and frameworks to deliver training in areas such as enteral feeding, dysphagia, epilepsy, and ventilator use. They conducted post-training observations with staff to support good practice and skills development. An external independent specialist reviewed nurse training competencies every 2 years to ensure they met the latest understanding and practices.

The provider had a system to ensure policies and procedures were comprehensive, up-to-date policies and had all the necessary information staff needed to care for CYP using the service.

The youth and transition team accepted internal and external referrals. They conducted an initial mental health assessment of each person to make sure they were able to support them and meet their needs. If a referred person needed more targeted psychologist support, the team discussed options with the referrer.

The service received proactive support from the Practice Education Team to build capability across a wide range of staff through education and learning. By taking a lead on education from a multidisciplinary (MDT) perspective, the team helped to drive standards of care beyond the hospice setting, positively impacting children and young people (CYP) and their families in the wider community. The education lead nurse and 2 nurse educators delivered training and development to clinical colleagues across all teams. This included practical training and support to complete e-learning. Staff completed a ‘train the trainer’ courses that enabled them to deliver training to colleagues. For example, the education lead nurse delivered basic life support training, and a physiotherapist delivered moving and handling training. A nurse educator specialised in respiratory care and the team delivered respiratory competencies and skills training.

Staff at Rainbows Hospice spoke with deep pride and passion about a service that consistently delivered care with exceptional warmth, creativity, and sensitivity. The team described a culture where compassion was not just encouraged but deeply embedded into every aspect of their work. Families were supported holistically, emotionally, spiritually, culturally, with no set endpoint, allowing relationships to continue in a way that honoured each child’s life and memory. The hospice embraced a highly inclusive and community-focused approach, offering support in multiple languages, engaging local faith leaders, and adapting services to reflect the diverse needs of the families they served. Staff were trusted to be innovative and reflective, empowered to tailor their support with flexibility and empathy. Across bereavement, sibling, and spiritual care, the depth of thought, planning, and emotional intelligence shown by the team ensured families felt seen, heard, and supported. Staff described an environment where listening, creativity, and exceptional care were encouraged and actively celebrated.

The medical examiner collaborated with staff to help them understand the physical and biological aspects of death, which raised awareness of how care and treatment affected peoples’ lives.

During the inspection, we saw posters and leaflets available in communal areas that encouraged visitors and families to lead healthier lifestyles. These included information on healthy eating, physical activity, and general wellbeing.

The youth and transition team had a broad remit and worked with teenagers to improve their holistic health and support empowerment and enablement. The team knew how to refer people to other specialist organisations such as for alcohol and drug cessation or sexual health guidance. This formed part of the team’s long-term, individualised health promotion support for people who used the service.

Staff balanced giving health promotion advice to teenagers and young adults with an understanding that they were free to make lifestyle decisions that may be ill-advised.

The Community Hubs, developed as part of the final phase of the ‘Rainbows experience everywhere’ strategy, were designed to offer social, emotional, therapeutic and practical support to children, young people and their families within their local communities. These Hubs provided a safe and welcoming space where families could meet others in similar situations, access support from Rainbows’ staff and take part in creative and meaningful activities. Feedback from families showed that the Hubs delivered an excellent level of care and support. Parents and carers consistently reported their hopes for attending, such as making connections, gaining emotional support and helping their children build friendships, had been fully met.

The service had systems and process to check outcomes and compliance with national guidance.

We saw that ‘symptom management’ stays at the service were led by Advanced Clinical Practitioners (ACP) in conjunction with medical professionals familiar with the child or young person’s needs. The aim of each stay was clearly identified, and care was planned accordingly. The first 24 to 48 hours were used for observation, with interventions and outcomes carefully assessed. Each child or young person had a symptom management plan developed and signed off by 2 ACPs, with any later changes authorised by an ACP and Clinical Nurse Specialist. On discharge, reports were shared with local teams to ensure continuity of care.

Advance Care Planning followed nationally recognised frameworks, including the Children and Young Persons Advance Care Plan and the antenatal advance care plan. Delegated responsibility for advanced care plan development by ACPs was obtained from lead medical clinicians.

Quality and outcomes were regularly reviewed as part of the Specialist Palliative Care Team caseload discussions. This process ensured that children and young people received the necessary support and helped find any gaps in service provision.

The hospice kept a clinical dashboard to check occupancy, contacts with external professionals, number of nights cancelled by families, number of referrals, declined referrals, referrals by county, locations and number of deaths known to the hospice and number of deaths by age category. Hospice occupancy in May 2025 saw a significant increase to 86% including an increase in end of life (EoL) and symptom management stays. There were 11 referrals with 1 declined. 50% of accepted referrals were in the 0-1 age group. New referrals were received from 4 of the 5 counties served by the hospice. In May 2025, there were 4 deaths all in the 2 younger age groups and 75% in the 0-1 age group. Support continued for both onsite and for community working staff, including an increase in clinical supervision, time and space sessions and debriefings. Fourteen short break nights were cancelled by families in May 2025, which was a reduction from the 30 in April 2025, these were for a variety of reasons including illness and no family accommodation availability- short notice stays were offered to other families when this happened.

The hospice provided a detailed clinical update report in April 2025, which included location of deaths known to the hospice. It showed that for 2024-25: 18% of deaths occurred in the hospice, 23% at home, 54% in hospital, and 5% in another location. When exploring the deaths in hospital for 2024-25 30/82 (37%) were in the under 0-1 age group and were still supported by Rainbows Nurses in hospital. In the last 3 months, 50% of deaths were neonates - all were supported by Rainbows Services. There was also increased use of the quiet room and post bereavement support reported. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions were approached with confidence and compassion, in line with Rainbows’ values, ensuring families were fully informed, involved, and supported throughout the process.

The clinical update report in April 2025 also reported the impact of the specialist palliative care teams’ interventions on the local system with 16 GP call outs avoided, 18 Hospital admissions avoided, 12 outpatient attendances avoided and 6 facilitated early discharges to the hospice.

The Single Point of Contact (SPOC) report also showed that between December 2023 and December 2024 there were:

• 46 babies, children, and young people on the caseload in total.

• 10 babies, children and young people accessed the service not previously known to Rainbows Hospice.

• 30 babies, children and young peoples’ deaths supported by the single point of contact service.

• 29 out of 30 died in their place of choice.

Rainbows Bereavement Services showed a compassionate and personalised approach to supporting families through grief. Families were given a dedicated Family Support Nurse or Worker for up to 15 months, providing consistent one-to-one emotional and practical support within the home or local community. Staff could also show how support extended well beyond this period, with families having open access to a wide range of services including counselling, group support, remembrance events, and cultural or sibling-specific support. This approach reflected a deep understanding that grief was unique and ongoing, and that families benefit from choice and flexibility in how they are supported.

Staff also shared the value of group bereavement supervision, which provided structured time to reflect and support one another with input from both therapeutic and sibling support specialists. The counselling service was flexible and inclusive, offering in-person, online, and telephone sessions scheduled around the family's availability. What was shared with us throughout the assessment clearly reflected a culture of empathy, dedication, and a strong focus on individual needs—highlighting the exceptional quality of care provided.

Collaborative working was particularly effective, with successful joint planning for 3 neonates at end of life on the NICU, including thoughtful support for 1 family to create meaningful memories at the beach before transferring to the hospice. Several families received help from palliative step-down stays at Rainbows prior to discharge home. Families described these as restorative and positive, helping them prepare emotionally and practically for changing care needs. Staff across the service continued to work in an integrated way, with strong collaboration between Family Support, Hospice at Home, clinical nurse specialists, ACPs, and youth workers. One family felt empowered and reconnected to life after a symptom management stay, with the home environment described as “happy again.”

The transfer of a baby for end-of-life care was managed with great sensitivity. Staff enabled the family to shift from passive grief in hospital to a calmer, more connected experience at the hospice. A member of staff also shared how a baby smiled for the first time since hospital admission, highlighting the positive impact of the hospice environment. Home-based care continued to support dignity and comfort, including a young person who was supported to bathe at home using specialist equipment, resulting in visible moments of joy and relaxation. Staff also responded to small but significant needs, such as enabling a mother in hospital to take a shower—an act that had a powerful emotional impact.

A neonatal simulation session received such positive feedback that plans were made to increase its frequency, enabling ongoing confidence and role clarity in supporting complex neonatal patients. These examples reflect the team’s ability to deliver responsive, personalised, and emotionally intelligent care that made a meaningful difference to families’ experiences.

The service regularly reviewed and discussed outcome data during multidisciplinary meetings and handover discussions. We saw this during our assessment. This kept staff well-informed and enabled them to respond promptly to any changes in children’s needs.

Parents and families, we spoke with described how the team used information thoughtfully to predict their child’s needs, creating a responsive environment where children received safe care.

The service regularly used audits and clinical pathways to support quality assurance and continuous improvement for children and young people. We saw MDT meetings and reviewed minutes, which showed that actions and goals were clearly set and followed up to improve care and outcomes. We also saw audit findings were regularly discussed in team meetings, handovers, clinical supervision sessions, and had a focus on learning, positive change, and continuous improvement. This encouraged staff to focus on the quality of care being delivered and using feedback to drive service improvement.

Meeting minutes showed clear actions and goals were set, with regular reviews to check progress. Where necessary, areas for improvement were found through audits and clinical reviews, and appropriate policies were implemented or amended in response. This formed part of a broader quality assurance and continuous improvement approach, underpinned by evidence-based practice and relevant research. The service ensured that PEWS/H was fully embedded in practice and checked through a well-led and ongoing action plan and tailored to technology and hospice specific.

The service followed its policies on consent, safeguarding, and made best-interest decisions in line with the Mental Capacity Act (MCA) and Deprivation of Liberty Safeguards (DoLS). Staff were trained in DoLS and applied this to the day-to-day care given to young children. The service had embedded a comprehensive action plan, which included targeted areas for development, particularly in strengthening understanding and application of the MCA.

The service involved parents, families, and young people throughout the care process, especially considering the needs of young children. Staff clearly explained procedures and decisions, which helped build understanding and trust. The staff conducted an assessment before admission and continued through to developing a personalised care plan, which was clearly recorded. During the assessments, parents said the experience was excellent, they had felt very anxious before but felt reassured and more confident once admitted.

The service had a policy on parental responsibilities, consent for admission, and information sharing, which helped ensure staff and parents worked together to protect children's well-being. A call bell and nurse intercom system allowed quick communication, improving safety and response times. Staff understood how to manage private or sensitive issues, including mental health concerns, and discussed confidentiality with the person so that everyone understood their rights. Care plans were clearly written and included input from parents and carers. Staff took time to explain care options and supported families in understanding the plans.