Alexander Devine Children's Hospice Service

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

At our last assessment we rated this key question as good. At this assessment the rating has remained the same. Leaders ensured care was delivered in line with current guidance and actively contributed to the development of guidance and demonstrating innovative, forward-thinking approaches. Staff consistently assessed and adapted care to reflect the individual preferences and evolving needs of children and families. Care planning was dynamic and responsive, ensuring personalised support at every stage. We also observed a strong culture of multidisciplinary collaboration. Teams worked seamlessly across professional boundaries, demonstrating shared accountability and a collective commitment to achieving the best possible outcomes for children and families.

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.

Care plans were detailed and holistic. For example, we saw a care plan that contained a personalised description of nonverbal pain cues. Assessments covered a wide range of needs, including communication, eating, drinking and clinical care, for example, a communication care plan included how the child expressed different emotions.

Care planning demonstrated clear understanding of complex conditions, with evidence that plans included specialist involvement and clear escalation plans. This ensured risks were identified with management plans. Emotional, developmental and daily living needs were also considered, including play and activity, mouth care and menstrual cycle. Assessments were person‑centred and reflected the individual needs and preferences of children.

Families were actively involved in assessing needs and setting goals for care. Families said this was a collaborative approach. This supported shared decision‑making and ensured assessments reflected what mattered most to children and families.

Assessments were supported by multidisciplinary input and specialist knowledge. Staff worked in partnership with external professionals to ensure assessments were comprehensive and informed by specialist expertise. For example, we found that clinical nurse specialists played a key role, in assessing care plans and working with community services.

Care was reviewed and updated as needs changed. Clinical records showed clear and ongoing documentation of care delivery. The service also used outcome measures to inform care planning and evaluation. There was evidence of structured approaches, including Family record of measured outcomes (FROMS). This supported ongoing review of care and alignment with family expectations and experiences.

However, some variability in multidisciplinary coordination was identified as some staff described challenges in integration across services. This reduced opportunities for shared reflection and collective review of assessments at a service level.

The service demonstrated a strong commitment to delivering evidence-based practice through a comprehensive programme of audit, benchmarking, quality improvement and governance activities. A monthly Journal Club enabled staff to review, discuss and apply current research findings, supporting the delivery of care that reflected the latest evidence and best practice. Across the 11 clinical groups, staff shared learning and good practice and contributed to the development and review of policies, standard operating procedures (SOPs), risk assessments, competencies and clinical audits.

To further strengthen quality and patient safety, the service established a Quality Board to oversee the implementation of the Patient Safety Incident Response Framework (PSIRF) and the Systems Engineering Initiative for Patient Safety (SEIPS) methodology. An annual audit programme provided assurance that care was being delivered in line with organisational policies and procedures. Audit findings were reviewed and resulting actions were clearly documented within improvement plans. Progress against these actions was monitored through the Clinical Governance Meeting, helping to drive continuous improvement and maintain oversight of service quality.

Care was delivered through a multidisciplinary model that brought together clinical and therapeutic expertise to meet children's complex needs. The multidisciplinary symptom management group provided robust governance and oversight of medicines management and symptom control, ensuring that care was consistent with current best practice and subject to regular review. Training and professional development were embedded throughout the service, with a strong emphasis on competency-based practice to ensure staff had demonstrated the required knowledge and skills before providing care independently.

The service used evidence-based approaches to tailor care to individual children's needs. For example, children receiving long-term ventilation were able to participate in family swimming sessions, hydrotherapy and music therapy delivered within the swimming pool environment. Families reported that the combination of music therapy and hydrotherapy enhanced outcomes for their children. Collaborative working and comprehensive risk assessments enabled children to access therapeutic interventions in a safe, engaging and personalised way.

The service had established strong partnership arrangements, including close working relationships with local Children's Community Teams and a service level agreement with a local children's hospice. These partnerships supported effective communication, continuity of care and consistent clinical decision-making.

Staff also contributed to wider professional learning and the development of the children's palliative care sector. For example, the service presented a healthcare transition poster at a national conference, sharing learning and promoting innovation in practice.

Staff demonstrated accountability for implementing policies and translating guidance into practice. For example, under the End-of-Life Care (EOL) Policy, the service doctor, Clinical Nurse Specialists and medical staff were responsible for maintaining up-to-date knowledge of local and national policies and guidance and for ensuring the effective implementation of end-of-life care pathways. This helped ensure that care was delivered consistently and in accordance with recognised standards and best practice.

Multidisciplinary working was evident in care delivery. Children’s needs were supported by a range of professionals, including paediatricians, clinical nurse specialists, children’s nurses and assistants, physiotherapy, music therapy, play specialists and counsellors. Clinical leadership supported coordination, such as the weekly Clinical Nurse Specialist caseload meeting. Staff also worked closely with partner organisations, with joint approaches including cross site training with another children’s hospice. These processes supported shared learning and consistent practice across services. Families described staff as working as one team. One parent said, “The hospice takes the lead and coordinate with other professionals. They listen to me and will always have my back and explain on my behalf so the other professionals will listen to me and this helps me to feel listened to”. Multidisciplinary staff described that this collaborative approach improved outcomes for children who previously were not keen to access therapy.

Staff supported one another closely, particularly during periods of complexity, deterioration or bereavement. Clinical, care, therapeutic and play teams worked across inpatient care and the community. This flexible approach enabled staff to maintain consistent relationships with children and families and reduced the risk of fragmented care.

The service had working partnerships with community and specialist teams, with evidence of a close working relationship with a local children community team. Staff told us that care was delivered collaboratively, with shared oversight, so that care was delivered where the child needed it.

Children were supported to maintain their physical health through access to a range of specialist care and therapeutic interventions. These interventions supported engagement, mobility and comfort for children with complex needs. This included the opportunity for family-based activities, for example, splash pool sessions and family festival days.

We found that the multi-disciplinary therapeutic support contributed to improved physical and emotional wellbeing for the whole family. Families talked of the positive outcomes from these approaches. For example, swimming was more relaxing because of the purpose-built environment and multidisciplinary support.

The service also supported emotional wellbeing through a holistic model of care. For example, children, staff and families were offered counselling. This recognised the wider impact of caring for a child with complex needs and supported family emotional wellbeing. Play specialists and therapeutic teams also contributed to emotional support, helping children express themselves and engage in positive experiences.

Families were supported to maintain their own wellbeing and mental health alongside their child’s care. The service enabled rest and recovery through respite provision and flexible support. Evidence highlighted the importance of this, with families reporting “We get a break, with peace of mind as everything is being done to look after our child safely.” This contributed to improved mental health and reduced stress for parents and carers.

The service promoted social wellbeing and inclusion through activities and family support. Opportunities were provided for children and families to engage in shared experiences, including sibling activities, family sessions and the bereavement café. This helped reduce isolation and supported families to build connections in a safe environment.

The service monitored and evaluated outcomes for individual children and their families using Family Reported Outcome Measures (FROMs). This supported person-centred care planning by identifying what children and families hoped to achieve and measuring progress against individual goals. Evidence demonstrated that outcomes relating to physical health, emotional wellbeing, resilience and independence were reviewed. Outcome monitoring was supplemented by patient and family feedback, clinical records and multidisciplinary review processes to ensure care remained responsive and personalised to changing needs. The service did not formally audit the use of FROMS.

Families were actively involved in discussing and evaluating outcomes for their child’s care and the support for their family. Families valued being asked for their views. One parent said, “It is a family wrap around service”. Bereaved families were also offered opportunities to provide feedback and to continue engagement through remembrance events and bereavement support activities. This recognised the longer‑term outcomes of care. A family said, “The Remembrance service twice a year is good”.

Care was reviewed and adjusted in response to the child’s individual outcomes and feedback. Staff monitored children’s progress through ongoing documentation, which ensured that care remained up to date and responsive to changes in condition or need. The service had structured systems in place to collect feedback on children’s physical, emotional and mental wellbeing; this ensured that outcomes informed care planning.

The service demonstrated positive outcomes through therapeutic and clinical interventions. For example, integrated therapies resulted in improved engagement and wellbeing. Families said their children benefitted from combined therapy sessions.

Learning from outcomes informed service development and improvements in care delivery. Staff described a culture of reflection and learning, for example, the monthly multidisciplinary incident review. Outcomes were considered alongside incidents, audits and family feedback to identify areas for improvement and enhance care practice. For example, families said about the positive difference the hospice team made to the lives of their children and their family.

Families’ experiences and feedback were central to reviewing progress and evaluating outcomes with evidence that families were asked what they hope to be achieved. Parents described positive impacts on their wellbeing, for example, “We get a break, with peace of mind as everything is being done to look after our child safely.” This demonstrated how outcome monitoring included family resilience and quality of life.

Consent was embedded within care planning and daily practice. Staff understood and applied the Mental Capacity Act 2005, supporting individuals to make decisions where possible and acting in their best interests when capacity was lacking. Staff demonstrated an understanding of the importance of gaining consent and involving families appropriately. This ensured that consent was consistently considered as part of care delivery.

There were clear systems in place to support the assessment of capacity and involvement of children and young people. Documentation reflected appropriate consideration of capacity, for example including Gillick competence for children under 16 years of age (Gillick competence is concerned with determining a child’s capacity to consent). This supported staff to assess and record whether children were able to contribute to decisions about their care.

Staff demonstrated awareness of legal and ethical frameworks relating to consent. Training and practice supported understanding of these principles, and staff told us that families could change their consent at any point. This ensured that consent processes were applied appropriately and consistently.

Parents and families were actively involved in decision‑making and supported to provide informed consent. The service maintained a collaborative approach, ensuring that families understood care and treatment options and were able to make choices that reflected their preferences. There was a culture of open communication, supporting families to feel confident in decisions about care.

Consent processes extended to all aspects of care, including therapeutic activities and the use of personal information. There were clear arrangements in place, for example staff said the service’s consent policy for taking photos documented that families were able to change their minds at any time.

Staff also recognised the importance of ongoing consent, ensuring that decisions were revisited when care needs changed. Communication with families supported this process, with staff working in partnership to ensure that consent remained valid and informed throughout the child’s care.