Alexander Devine Children's Hospice Service

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• 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

At our last assessment we rated this key question as good. At this assessment the rating has remained as good. We found a service where care was continually reviewed and adapted to strengthen person-centred delivery. Leaders and staff demonstrated a clear commitment to ensuring that care was tailored to the needs, preferences and circumstances of individual children and their families. Children, families and those who used the service were placed at the heart of service design and delivery. They were actively involved in shaping care and contributing to service development. The service showed flexibility in adapting provision to ensure the service reached those who needed it, at the right time.

This service scored 75 (out of 100) for this area. Find out what we look at when we assess this area and How we calculate these scores.

The hospice delivered highly personalised, multidisciplinary care that placed children and families at the centre of decision-making. Nursing staff provided responsive, individualised care based on comprehensive assessments, supporting children's clinical, emotional and social needs while coordinating care and offering practical and emotional support to families. Clinical Nurse Specialists worked closely with families and partner organisations to assess needs, develop care plans and coordinate care across settings, ensuring support adapted to changing circumstances. Medical staff provided timely specialist advice and worked collaboratively with external healthcare providers to develop symptom management, advance care and end-of-life plans that reflected families' wishes and cultural preferences. A multidisciplinary team, including nurses, doctors, therapists, counsellors and transition specialists, worked together to deliver coordinated care and support that achieved outcomes meaningful to children and their families.

Care and support were delivered by staff in a person‑centred way that reflected the individual needs, preferences and circumstances of each child and family. This included hydrotherapy, music therapy, play therapy, gaming for teenagers, sensory activities and family events. Risk was managed proportionately to enable participation rather than restrict it. Care was adapted creatively so children with complex needs could meaningfully take part in activities. For example, staff and families said that music therapy helped children relax during physiotherapy and hydrotherapy.

The children’s care plans were highly individualised and informed by assessment, family knowledge and ongoing review of each child’s clinical, emotional, developmental and communication needs. Records showed care plans included detailed information about what mattered to each child, how they communicated, what helped them feel comfortable and what caused distress. Families described activities and care was tailored rather than standardised. For example, a parent said, “my child made a cake for their dad’s birthday”.

Children, young people and families were actively involved in care planning and review. Staff consistently sought family input and treated parents as partners in decision‑making. Where children were able to express preferences, these were respected and recorded. Care planning conversations also focused on outcomes important to the child and family, such as comfort, enjoyment, family time or maintaining routines. Families told us how staff would include the whole family in decision making and one parent told us, “They include my other children in the conversation … nothing seems too much trouble.”

Care plans including respite, community visits and emotional support were reviewed regularly and updated in response to changing needs, preferences or circumstances. One parent said, “They listen to me and will always have my back and explain on my behalf”. Another parent said, “We can use the family flat during the day to rest”. Staff said the weekend group music therapy enabled families to spend time together in a supportive environment if they didn’t see each other very often.

Person‑centred care was given during end‑of‑life care and after death and their cultural, religious and personal wishes were respected. Families were able to personalise the bereavement environment, memory‑making activities were offered, and families were supported in ways that reflected their preferences.

Children and families were routinely involved in planning care and shared decision-making. Care was tailored to each child's individual clinical, emotional, social and developmental needs, with staff taking time to understand family preferences, communication methods, cultural requirements and personal goals. Care plans contained detailed personalised information, including communication preferences, non-verbal pain indicators, feeding requirements, seizure management, sleep routines and activities that were important to the child. Staff used this information to deliver highly individualised care and treatment.

The hospice delivered highly personalised, multidisciplinary care that placed children and families at the centre of decision-making. Nursing staff provided responsive, individualised care based on comprehensive assessments, supporting children's clinical, emotional and social needs while coordinating care and offering practical and emotional support to families. Clinical Nurse Specialists worked closely with families and partner organisations to assess needs, develop care plans and coordinate care across settings, ensuring support adapted to changing circumstances. Medical staff provided timely specialist advice and worked collaboratively with external healthcare providers to develop symptom management, advance care and end-of-life plans that reflected families' wishes and cultural preferences. A multidisciplinary team, including nurses, doctors, therapists, counsellors and transition specialists, worked together to deliver coordinated care and support that achieved outcomes meaningful to children and their families.

The service took a flexible approach to meeting the needs of the children and their families who used their service. staff provided respite care at home, at the hospice and in hospital, and different therapies was also provided at home which families said they found very supportive. To ensure a continuity and consistent approach to care, communication and routine regardless of setting information was shared across the care setting.

The service promoted an integrated approach between them and external partners to deliver coordinated care. Shared care arrangements supported continuity when children transferred between settings or providers. Information, assessments and care plans were shared appropriately, reducing duplication and supporting safe, joined‑up care. A parent said, “I couldn’t ask for a better service. The hospice takes the lead and coordinates with other professionals”. Families said they felt confident that staff knew their child, understood their history and worked together to meet needs. Another parent said, “I trust them wholeheartedly.” Families said this approach reduced anxiety and strengthened relationships with staff.

Young people transitioning to adult services were supported through strong partnership working between families, adult hospice services and community teams. These collaborative arrangements promoted continuity of care and treatment, with services working flexibly and cohesively to meet individual needs. The service had developed comprehensive transition information for young people and their families, including a concise healthcare profile to support communication across services. Feedback from a parent highlighted that the Transition Lead provided practical and valuable support throughout the transition process.

The service demonstrated a strong understanding of the diverse and complex needs of children and families within the local community. Families described receiving a wide range of support tailored to their individual circumstances, including respite care, hydrotherapy, music therapy, counselling, family activities, sibling support, bereavement services and practical assistance. Parents explained that the hospice recognised the challenges of accessing community facilities and appointments, particularly for children with complex disabilities, and provided accessible alternatives in a safe and supportive environment. Families also valued the emotional support available to parents, siblings and carers, with one parent describing the service as a "family wrap-around service" and others highlighting the inclusive, whole-family approach.

Families consistently described receiving responsive and well-coordinated care that met their children's assessed needs. Parents told us staff worked collaboratively with other professionals, advocated on behalf of families and responded quickly when concerns arose. The hospice adapted services around family circumstances and provided flexible support during periods of crisis. Families gave examples of nurses liaising with medical professionals, supporting access to healthcare services and coordinating care across agencies. Parents also described thorough medication and handover processes, which helped ensure children received safe and consistent care. One parent explained that the hospice had "taken the lead" in coordinating support from other professionals and ensured their voice was heard, while another described receiving additional respite during a period of significant family stress.

Families were actively engaged in every aspect of the service, ensuring their voices shaped care delivery and service development. For example, the service had established the monthly Bereavement Café in response to family feedback.

Children, young people and families were provided with clear, timely and relevant information. Staff shared information proactively and responded promptly to questions or concerns. Information was given at key points, including referral, admission, changes in care needs, and transitions between services. Families described communication as open and accessible. Information related to care, treatment, support options and next steps was shared in a way that supported understanding and reduced anxiety.

Information was personalised and adapted to suit individual families’ needs, preferences and levels of understanding. Staff adjusted how information was shared, considering emotional state, previous knowledge and communication needs. Staff used plain language and avoided jargon, particularly when explaining complex or sensitive issues. For children and young people with communication needs, staff used observation, symbols and familiar cues to help them understand what was happening.

People were supported to ask questions and seek clarification. Families reported feeling comfortable asking questions and seeking clarification. They said that staff encouraged open communication and reassured them that questions were welcome at any time. Families said that staff were responsive when they contacted the service, particularly when support was provided in the community.

The service also used structured communication systems to share information across teams and with families. For example, the service provided the Family newsletter which included family events, new staff, Chief Executive message, and changes to care or services.

Information sharing enabled families to make informed decisions about care and support. Staff explained options, risks and potential outcomes and allowed families time to consider choices. Families said they found this particularly supportive during periods of change, including escalation of care, healthcare transition planning and end‑of‑life decision‑making.

The service had in date Information Management and Records (Data Protection and Security) and Privacy policies. This informed all staff of the appropriate management of all data and records to ensure the confidentiality and privacy of individuals and outlined how and why the organisation keeps confidential data.

Children, young people and families were listened to throughout their involvement with the service. Staff took time to listen to what people said and created an environment where families felt listened to and valued. Families consistently described feeling heard and respected. A parent said, “I felt heard and seen – they were knights in shining armour.” Another shared, “Everyone is very friendly and we are seen and respected as a family.” Staff were attentive during both planned discussions and informal conversations. This included recognising communication from children, particularly those who were unable to express themselves verbally.

Children and families were actively involved in care planning, review and decision‑making. Families described decision‑making as collaborative. Staff sought views about care preferences, routines and goals, and incorporated these into individual care plans. Staff adapted care in response to what children and families said, including adjusting routines, activities and levels of support. Families described having a good working relationship with their care team so they could discuss their concerns and worries about their child’s health and care. One parent said, “They know the impact for me.” Where children were able to participate, their views and preferences were included. For children who could not communicate verbally, staff involved families and observed behavioural cues to guide decisions.

We found that people were encouraged to share feedback, concerns and ideas. Families were encouraged to share feedback informally and formally. Staff promoted an open culture where concerns could be raised without fear of being viewed negatively. Parents reported feeling comfortable raising issues. Feedback was used to inform individual care and service delivery. For example, bereaved families were able to connect following feedback requesting more relaxed support environments.

Collaborative arrangements with community services and another children’s hospice ensured that families could access appropriate care. This helped maintain continuity and availability of care, particularly for children with complex needs. Referrals were considered in a timely manner, and decisions were communicated clearly to families. The service prioritised children requiring end‑of‑life care and urgent support, ensuring timely access when needs increased. Families described situations where their family was supported to reduce stress on the whole family.

Parents were able to stay onsite when their child attended the hospice, which reduced financial and transport barriers and supported families who found travel challenging. Flexible care delivery, including community visits and blended onsite support, helped families who were unable to attend the hospice regularly. Care packages were adapted to family circumstances wherever possible. One parent said, “We can use the flat during the day to rest. We get a break, with peace of mind as everything is being done to look after our child safely”.

Families experiencing increased stress, crisis or reduced support elsewhere were prioritised appropriately. Families said they were offered additional respite or short‑term support in response to deterioration, breakdown in other provision or family wellbeing concerns.

Care environments were physically accessible for children and families with disabilities. The premises were purpose‑built and enabled access for wheelchair users and families with complex needs. For example, the playground was accessible for all children and each door inside the building had visual room symbols and adapted communication approaches. At the time of inspection, the service was reviewing the type of tables in the dining room for adaptable height tables to make it easier for children using wheelchairs to access.

The service worked with faith leaders and external partners to support families from different faith backgrounds, particularly at end of life. Arrangements were made to support rapid certification of death and timely burial where required, ensuring families were able to follow cultural or religious practices.

Children and families experienced fair and non‑discriminatory access. Families described feeling welcomed and valued regardless of background, family structure or circumstance. Another parent told us how flexible the service had been to enable their family to access support.

However, while access was equitable at an individual level, service capacity and staffing pressures limited the amount availability of respite, overnight care and therapy. Families understood that this ensured a safe service, but expressed disappointment when preferred options could not be offered.

Care was tailored to individual needs to achieve equitable experiences rather than identical provision. Children with complex physical, sensory, communication or developmental needs were supported to access activities, therapies and care in ways that were meaningful and appropriate to them.

Outcomes were personalised, reflecting what mattered most to children and families rather than standardised measures alone. For some children, outcomes focused on comfort and symptom management; for others, participation, enjoyment or building confidence were prioritised. Families were involved in defining meaningful outcomes and reviewing progress which they said made them feel included and valued.

The service provided emotional support to families under high levels of stress, prioritised families who were experiencing gaps in other support and offered flexibility in how care was delivered. This meant the service took steps to reduce inequalities that could otherwise affect experience. A parent said, “I am a single parent and have no family, so I reach out to the hospice for help”.

Staff used individualised communication methods, observation and family knowledge for children who had learning disabilities and autistic children to understand preferences, distress and enjoyment. Care plans clearly described individual communication styles, enabling staff to respond consistently. This ensured these children were not disadvantaged in care decisions or experiences. Families spoke positively about staff understanding.

Families received the same level of compassion, support and flexibility during end‑of‑life care regardless of cultural background, faith, family structure or care setting. After death, families were supported in ways that reflected their wishes and beliefs. Bereavement support was offered consistently, with flexibility in how and when families engaged.

Equity of experience and outcomes was largely monitored through qualitative feedback, reflective practice and family‑reported outcomes. Staff used ongoing dialogue with families to understand whether care and support were having the intended impact. Families consistently described positive experiences and outcomes. One parent said, “They work hard to do stuff that the children enjoy. I get nervous about handing over and I feel happy when my child goes and they come home happy”.

While care remained safe and effective, capacity pressures also affected consistency of experiences and outcomes at times, as service limitations influenced access to activities or support.

The service demonstrated proactive planning for children with complex and life‑limiting conditions, including end‑of‑life care. This ensured families had access to appropriate support and guidance as needs changed. Staff worked collaboratively with families to identify goals and expectations to meet individual needs and preferences over time.

Specialist roles contributed to planning for the future, particularly through clinical leadership and coordination and all staff were involved in assessment and long‑term planning.

The service also worked in partnership with external organisations to support continuity and long‑term care pathways. Joint working arrangements and training supported shared understanding and coordination across services, ensuring children and families experienced consistent care as their needs changed.

Families were supported emotionally and practically to prepare for the future. The service recognised the impact of uncertainty and provided support to help families manage transitions and changes in their child’s condition. This included access to counselling, wider support services and ongoing communication with staff.

Transition needs were identified early and discussed with families in a structured but flexible way. It recognised emotional, practical and clinical aspects, helping families understand what care and support would look like in the future and reducing uncertainty. Families described this as reassuring. One parent said that healthcare transition had worried her as their family were looked after so well by the service, but working with the Transition Lead had been very helpful and practical.