Helen and Douglas House

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

At our last assessment we rated this key question as good. At this assessment the rating has changed to outstanding. We found a service where all areas of care were continually reviewed and adapted to strengthen person-centred delivery. Leaders and staff demonstrated a clear commitment to ensuring that care was tailored to the individual needs, preferences and circumstances of children and families. Children, families and those who used the service were placed firmly at the heart of service design and delivery. They were actively involved in shaping care and contributing to service development. Leaders showed flexibility and foresight in adapting provision to ensure the service reached those who needed it, at the right time. There were clear plans in place to further evolve care to reflect developments in children’s palliative care.

This service scored 96 (out of 100) for this area. Find out what we look at when we assess this area and How we calculate these scores.

We scored the service as 4. The evidence showed an exceptional standard. The service ensured that children and families were at the centre of their care and treatment choices.

Children and families had access to a variety of play and activity areas, supporting opportunities for one-to-one interaction, group activities, or quiet time. The service included a playroom, education room, conservatory, art and music therapy spaces, a sensory room and a dedicated area for teenagers. The garden featured play equipment, musical instruments and sensory zones, as well as several outbuildings, one of which was reserved for teens, alongside separate sheltered areas.

All areas of the service were wheelchair accessible. One family flat was located on the first floor, with a second flat available on the ground floor. Families told us that staff “could not do enough” for them, assisting with tasks such as groceries and laundry. In one example, the service supported a couple who were separated by allowing one parent to stay in an onsite flat while managing their personal arrangements.

Children and families had unrestricted access to hot and cold drinks and food. Kitchen staff worked closely with families to review menus, offering a daily selection of hot dishes, sandwiches and cold snacks. Meals were tailored to meet both medical requirements and personal preferences. Staff also organised cooking sessions with children and families, providing opportunities to learn how to prepare favourite meals as well as ethnically diverse dishes.

Families had access to free onsite parking. The service was located in central Oxford, where congestion zone charges had recently been introduced by the local council. In response, the service offered financial support for travel and provided guidance on routes that avoided congestion zones, ensuring families could access the service easily.

Although the buildings met national standards and guidance requirements, managers proactively developed a comprehensive estates action plan to identify refurbishment priorities through a “care compliance lens.” This followed a review which identified that the service had last undergone full refurbishment in 2014. Leaders recognised the importance of creating not only a clinically compliant environment, but one that was inclusive, welcoming and shaped by the children and families who use the service. The action plan included consideration of environmental adaptations to improve accessibility. For example, wall colour schemes were being reviewed to better support children with visual impairments in distinguishing between communal areas. The service was also actively gathering feedback from children and families to inform the development of a new mural for the main corridor, ensuring the environment reflected the tastes of the people who use the service.

We scored the service as 4. The evidence showed an exceptional standard. Leaders and staff showed a strong understanding of children’s diverse and complex needs. Care was well-coordinated and adaptable.

Staff and leaders demonstrated an exceptional understanding of the diverse health and care needs of children, young people, and their families. They delivered flexible, coordinated, and person-centred care that promoted choice, continuity, and dignity.

The service worked effectively and collaboratively with other providers to ensure care was responsive to the needs of the local community. Staff routinely signposted families to other areas of the hospice during assessments, ensuring they could access the full range of available support. Leaders maintained strong and well-established relationships with NHS hospitals and consultants, promoting seamless integration, shared decision-making, and effective cross-service collaboration.

All staff described strong managerial support for expanding service capacity. For example, physiotherapy provision had increased from three to five days per week in recent years. The physiotherapy team had broadened its scope to include complementary therapy and was developing a business case to introduce an occupational therapist. The physiotherapist told us the hospice role offered greater scope and professional variety than a traditional setting.

The service had expanded to provide dedicated perinatal support to families receiving care through the local acute NHS trust who were informed during pregnancy that their baby had a life-limiting condition. The Perinatal Nurse advised that initial contact with families was typically made shortly after the 20-week anomaly scan, when many families first receive this news. However, some families were informed earlier, for example through early pregnancy blood tests screening for Edwards’ syndrome or Patau’s syndrome or following earlier scans indicating potential anomalies. In response, the service was actively exploring ways to engage with families at the earliest possible opportunity to ensure timely support. A central component of the role was the provision of specialist psychological and emotional support. Families were referred by the trust’s Fetal and Maternal Medicine Unit and offered a two to four-hour counselling session involving the perinatal nurse and a neonatologist. These sessions were flexible and adapted to meet individual family needs. Following the initial meeting, the perinatal nurse worked with families to determine the type and level of ongoing support required. Where families chose to continue the pregnancy, the perinatal nurse acted as an advocate throughout scans, consultant appointments and birth planning discussions, ensuring parents’ wishes were heard and respected. Following birth, support included assistance with memory-making activities and facilitating milk bank donation where appropriate. The perinatal nurse also ensured that mothers received their six-week postnatal check. This was particularly important, as research had identified that women whose babies died before or shortly after birth had not always received routine follow-up from community health visiting services. The service therefore implemented processes to reduce this risk and ensure mothers were not overlooked.

We scored the service as 4. The evidence showed an exceptional standard. The service consistently tailored information to ensure it was accessible, responsive and appropriate to the needs of those receiving it.

Families were actively engaged in every aspect of the service, ensuring their voices shaped care delivery and service development.

Leaders and staff used innovative and inclusive approaches to communication. For example, the service developed a visual, easy-read medicines information pack for a parent with learning disabilities, enabling them to fully understand and safely manage their child’s medication.

All parents were routinely asked about their preferred methods of communication, and these preferences were clearly documented and regularly reviewed by key workers during annual review meetings. This ensured communication remained appropriate, personalised, and responsive to changing needs.

The service was also developing new information leaflets and actively sought family input throughout the process. Draft materials were reviewed in parent feedback sessions to ensure they were clear, meaningful, and relevant to families’ needs.

Feedback from children and parents was consistently gathered across all departments. For example, therapy evaluation forms included questions such as how the therapist made them feel, whether the therapy was clearly explained, and whether they felt comfortable. This demonstrated a strong commitment to understanding lived experience and using feedback to drive service improvement.

The service further strengthened engagement through quarterly Family Focus Group meetings, which provided a structured forum for families to influence service development. For instance, an upcoming session was arranged for a newly appointed therapist to introduce their role and explain how it would benefit children and families, encouraging open discussion and direct feedback.

We scored the service as 4. The evidence showed an exceptional standard. The service made it easy for children and families to share feedback, contribute ideas, or raise concerns about their care, treatment and support.

Families consistently told us they were given multiple opportunities to provide feedback and felt listened to, with confidence that the service acted on their suggestions. They described being actively involved in both the development and running of the service. Each family was allocated a named key worker who they could approach at any time with questions or concerns. Annual reviews provided a holistic opportunity to assess not only the child’s care but also the wellbeing of the whole family.

Recent patient feedback questionnaires rated all areas of the service as either “excellent” or “good.” Leaders also proactively reviewed the experiences of families who were less engaged with the service, seeking to understand barriers and identify improvements to enhance accessibility and inclusivity.

The service was actively exploring ways to extend support within the community. A recent service-led event resulted in two families, previously unknown to the service, engaging for support. Feedback was overwhelmingly positive, and leaders were developing a model to replicate this approach across other towns and localities.

In the 12 months prior to inspection, the service had not received any complaints. However, robust policies and procedures were in place to ensure any complaints would be independently reviewed within clearly defined timescales, with structured feedback and learning processes. Feedback mechanisms were fully embedded within governance arrangements, with clear escalation routes, sign-off processes, and leadership oversight. Staff understood their responsibilities in relation to receiving and responding to feedback and consistently demonstrated a culture that viewed feedback as a tool for improvement rather than criticism.

Where families raised concerns, they were actively involved throughout the review process. When changes were made to practice, follow-up feedback was sought to ensure concerns had been effectively addressed and would not reoccur.

Although formal complaints had not been received, leaders recognised that concerns raised through multi-agency pathways often involved several providers. These cases were reviewed as shared learning opportunities in team meetings to identify improvements and strengthen partnership working.

We scored the service as 4. The evidence showed an exceptional standard. The service made sure that children could access the care, support and treatment they needed, when they needed it.

Referrals for end-of-life care were accepted directly from acute trusts via the electronic patient record system or from GPs. Parents and GPs could also refer directly for respite care and symptom management, ensuring timely access to support across a wide range of needs.

The service developed a streamlined online admission form, enabling referrers to select the type of support required, including bereavement, sibling support, community services, and respite care. A “don’t know” option was also introduced for families new to the service who were uncertain about what support was needed. This improvement was introduced in response to family feedback, recognising that following a poor prognosis families can feel overwhelmed by information.

Weekly referral meetings were held to review all new referrals and allocate them to the most appropriate pathway. Assessments were carried out in a location chosen by the family according to their preferences.

The service recently introduced an advanced nurse practitioner role. These practitioners were consistently available on site and appropriately trained and competent to safely manage admissions, significantly improving flexibility and responsiveness. During the assessment, we observed the impact of this role when a family arriving from out of area was delayed by several hours; despite this, the admission was successfully completed, enabling the planned overnight stay to proceed.

Staff actively reviewed the accessibility of the service to ensure the service was reaching the right children, at the right time, in the right place. This included developing a community outreach model to extend provision into Buckinghamshire and undertaking geographical analysis to better understand barriers to access, particularly for families travelling to Oxford, and to identify suitable, accessible community-based locations.

The service worked collaboratively with oncology departments and a national children’s charity focused on improving access to palliative care services. Together, they developed a toolkit to enhance communication, improve information materials, and strengthen engagement with clinical teams, helping to ensure that marginalised groups received clear, consistent, and up-to-date information about available services.

Children and families were only discharged once they had successfully transitioned to adult services. In all other cases, families remained on the service’s records unless they requested discharge. Staff consistently reinforced that the service remained available whenever needed, regardless of how much time had passed, reflecting a long-term, relationship-based model of care.

We scored the service as 4. The evidence showed an exceptional standard. The service had comprehensive and effective systems in place to ensure care and treatment were consistently delivered in line with evidence-based standards.

There was a clear and embedded commitment not only to meeting recognised standards for patient outcomes, but to advancing practice through research and innovation. The service actively contributed to research and development to improve outcomes for children and families. For example, a complementary therapy service had been introduced in response to evidence demonstrating benefits in pain reduction, anxiety management, treatment side effects, relaxation, and overall quality of life. Therapies were highly individualised and underpinned by robust risk assessment, ensuring they enhanced wellbeing without compromising safety. Care plans reflected thoughtful, holistic decision-making tailored to each child’s clinical needs.

At the time of assessment, teams were preparing to share learning at a national conference, including work on a physiotherapy play initiative and a staff appreciation app. The physiotherapy team was also contributing to a sleep study in partnership with a local NHS acute trust, focusing on respiratory care.

The service demonstrated strong leadership in paediatric palliative care research. Staff were leading and contributing to formal studies, including research into the use of transmucosal fentanyl for breakthrough pain and participation in a clinical trial comparing transmucosal diamorphine with oral morphine. In addition, the team had undertaken an end-of-life pain management review involving multidisciplinary professionals and families to better understand experiences of managing pain in the community. Findings from this work were used to directly inform service development and improve care delivery.

Medical staff were not only implementing clinical guidelines but actively shaping them. Clinicians were involved in guideline development and review groups, including ongoing work focused on pain management and dystonia. This demonstrated influence beyond the organisation and a strong contribution to national best practice.

The service also engaged in research and evaluation to benchmark and strengthen performance. For example, it contributed to a national study exploring collaboration and partnership working in children’s palliative care, using the findings to reflect on and enhance its own approach.

A strong culture of continuous improvement was evident. The physiotherapy team evaluated a stretching programme to assess its impact on pain management, while the service closely monitored whether children were able to die in their preferred place, consistently achieving rates in the high 90s.

We scored the service as 3. The evidence showed a good standard. The service made sure that children’s needs were included in plans regarding the development of the service.

The service was reviewing renovation plans, including an indoor swing and potential relocation or redevelopment of the pool following a land donation. Community-based provision was being expanded, offering more home care, counselling, and local events to reduce travel challenges.

Managers were in the process of developing a structured chaperone pathway, with plans for staff training, improved documentation and audit to ensure children’s choice and safety.