Demelza, Hospice Care for Children - Kent

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• Overview
• Kindness, compassion and dignity
• Treating people as individuals
• Independence, choice and control
• Responding to people’s immediate needs
• Workforce wellbeing and enablement

This meant we looked for evidence that people were always treated with kindness, empathy, and compassion. We checked that people’s privacy and dignity was respected, that they understood that they and their experience of how they were treated and supported mattered. We also looked for evidence that every effort was made to take people’s wishes into account and respect their choices, to achieve the best possible outcomes for them.

At our last assessment we rated this key question outstanding. At this assessment, the rating remains outstanding. This meant people were truly respected and valued as individuals; and empowered as partners in their care. We assessed all quality statements in this key question.

Staff treated everyone with kindness and compassion, they protected people’s privacy and dignity and empowered children and young people by supporting their preferences. Babies, children, and young people received one-to-one care and staff responded quickly to their needs. At end of life, staff went above and beyond what was expected to meet individual needs and honoured the wishes of children and families during this difficult period.

The hospice environment and community outreach enabled personalised care wherever it was needed most. Staff wellbeing was prioritised, empowering them to provide exceptional support. Advance care planning was handled with sensitivity, ensuring every child’s journey is surrounded by comfort, peace, and unwavering care.

This service scored 95 (out of 100) for this area. Find out what we look at when we assess this area and How we calculate these scores.

The evidence showed an exceptional standard. The service was exceptional at treating people with kindness, empathy, and compassion and in how they respected people’s privacy and dignity. Staff always treated colleagues from other organisations with kindness and respect.

Staff consistently delivered compassionate, personalised care that families described as “life changing” and “beyond expectations.” One relative told us “The service is a blessing for both of us, a real lifeline – I don’t know where we would be without them.” Another said, “The service did what I didn’t think was possible.” These powerful testimonials were echoed throughout our visit, highlighting the depth of trust and gratitude families felt.

Children and young people appeared to feel safe, valued, and joyful. One child had described their experience as “like going to Disney Land,” reflecting the warmth and emotional security they felt while receiving care.

Staff showed genuine affection, smiling, laughing, and using body language to connect—making children feel comfortable and content.

The service gave staff time and support to build meaningful relationships. The service consistently provided one-to-one staffing during the day, with two-to-one ratios when needed. This enabled staff to understand each child’s personality, preferences, and interests. The service prioritised continuity of care, with the same staff caring for children across shifts to foster emotional security and strengthen bonds.

Staff actively recognised the importance of helping people stay connected to their advocacy and support networks. They went beyond clinical care to support access to the wider community. For example, the hospice’s volunteer transport service enabled families to attend events they might otherwise have missed. One relative shared how the service collected them and their child with complex medical needs to attend a charity event. They said, “The service cares for the whole family.” They spoke warmly about their other child, who also attended residential stays and “loved attending the service with their sibling.”

The service placed strong emphasis on supporting the whole family, especially siblings. Staff understood that siblings need space to express and explore their feelings and provided tailored emotional and social support. From age 5, children could access group or one-to-one sessions with fun, age-appropriate activities designed to help them feel seen, heard, and supported.

Staff gathered feedback through multiple channels, including social media and internal systems. The feedback was consistently positive, highlighting how staff treated patients with kindness, compassion, and dignity. One bereaved father, who attended a ‘Dad Brunch’ offered by the service, described the experience as “beneficial and comforting,” and valued the opportunity to connect with other bereaved dads.

The service stood beside expectant parents during some of their most challenging moments. Staff supported pregnant people facing the possibility of a complex or life-limiting diagnosis for their baby. Dedicated family liaison practitioners offered hands-on support, guiding families through emotional turmoil, connecting them with vital resources, advocating on their behalf, and helping with financial aid and grant applications. They also supported siblings and ensured smooth referrals to additional services.

Staff were proud of the music therapy they offered. It created a safe space for children, young people, and families to address emotional, cognitive, and social needs. Music therapists visited homes, schools, and hospitals, including local baby care units. Virtual sessions were also available on evenings and weekends to ensure accessibility for the whole family.

The hospice offered a memory-making service at home, in hospital, or on site. Families created lasting physical memories through hand casting, clay impressions, and ink prints for jewellery and handprints. One team member, a skilled calligrapher, learned to write in other languages and characters to honour families’ wishes and diversify the role of memory-making.

Leaders emphasised the importance of peer support during difficult times. The service organised remembrance events that gave families a supportive space to connect with others who had experienced similar losses. These events included creative activities like art and candle lighting, and families received meaningful keepsakes to take home.

The service also provided highly personalised community care. Staff tailored each session to meet the specific needs of the family. One relative used the time to take driving lessons while their child was cared for by the experienced team.

The evidence showed an exceptional standard. The service treated people as individuals and was exceptional in how they made sure people’s care, support and treatment met people’s needs and preferences. The service took account of people’s strengths, abilities, aspirations, culture and unique backgrounds and protected characteristics.

Staff met children’s communication needs with creativity and care. They proudly told us about bespoke picture card prompts designed for non-verbal children and explained that interpreters and translators were available on request. One relative shared how staff created personalised communication cards that mirrored those used at home, which helped their child feel safe and understood. We saw staff communicating at eye level to build trust and encourage engagement.

The service had creative ways of reflecting people’s personal histories and cultural backgrounds, and the staff were matched with people’s interests and personalities. The service implemented gaming support for young people, siblings, and dads to foster connection and act as a form of talking therapy. The idea came from an experienced healthcare assistant who worked directly with teenagers and took on the role of a transitional lead. They noted that gaming helped level the playing field by removing differences such as disabilities. Leaders told us it offered a sense of normality in situations where children and young people might otherwise feel excluded. Due to the benefits, the service introduced gaming as a routinely referable service.

Staff spoke with pride about how they adapted care to meet individual needs. In one example, they sourced specific foods to honour a child and their family’s cultural preferences. Leaders also described a bereavement event led by a team focused on cultural diversity, aimed at learning how to better support families from different backgrounds during end of life care.

The service encouraged staff to share ideas. One staff member showed us a “Discover Demelza” sensory box they had helped design, filled with poems, memory items, and sensory objects relating to different areas of the service. The box helped children and young people understand what to expect from their care journey and was inclusive for all ages. It was evident the staff member we spoke to was full of pride when discussing the sensory box and made it clear that patient voice was central to the service.

Staff showed deep cultural awareness in their approach to death and bereavement. They supported families to carry out important rituals with sensitivity and respect. One relative described the care their child received after death as “utterly extraordinary” highlighting how staff upheld Muslim traditions after death. Staff also arranged a funeral within 24 hours and contacted the family’s Imam to pray with them, ensuring religious customs were honoured.

Staff treated every baby, child, young person and family with dignity. Bereavement suites had separate access from the inpatient ward, protecting families from distressing encounters and allowing them to celebrate life in line with cultural traditions.

The service used music therapy to support siblings in the days following the death of a loved one. Staff recognised that children experience grief differently and offered one-to-one music and art therapy sessions tailored to their emotional needs.

The service extended its support to wider family networks, including grandparents and neighbours. A dedicated support group helped grandparents share experiences and navigate grief together.

Staff made sure they captured the additional needs of children and young people, recording hobbies, interests, and emotional, social, and spiritual needs prior to and during hospice stays. This allowed staff to tailor each stay to reflect individual preferences and create a more meaningful experience.

The evidence showed an exceptional standard. The service was exceptional at promoting people’s independence, so people knew their rights and had choice and control over their own care, treatment, and wellbeing.

Staff ensured children and young people had plenty of activities to choose from and encouraged decision-making through play. Activities were inclusive and accessible. One child began by making a Father’s Day card in the art therapy room, then chose to play the piano—each choice fully supported by the nurse caring for them. We observed staff caring for children with exceptional attentiveness. They were gentle, kind, and patient.

Staff helped fulfil children’s and young people’s wishes in meaningful ways. For example, they arranged a professional photoshoot for a child’s birthday, creating a joyful and memorable experience tailored to the child’s interests. Staff offered creative and inclusive ways to extend care beyond the hospice. Families could register to receive sensory boxes and music therapy bags, posted or delivered to their homes by volunteers. Each item was themed around the seasons. We saw a sensory box inspired by a popular children’s book, designed to spark imagination and comfort. Music therapy bags included a 30-minute sound link, with each track paired with a sensory item to encourage exploration and emotional engagement.

The service offered a volunteer-run transport facility that families described as “going above and beyond.” One relative shared how the service enabled them to attend events and appointments they would have otherwise missed due to their child’s complex medical needs. They also spoke of being able to sit in the back of the car and hold their child’s hand after radiotherapy, saying they were “truly grateful.”

The physical therapies (PT) service promoted independence, choice, and control by providing equipment tailored to individual needs. Staff sourced a buggy from a charity for a child who wasn’t eligible for wheelchair services, enabling the family to leave the house more easily. They also replaced an unsuitable bed at home with a more child-friendly option and arranged ongoing six-monthly risk assessments.

Staff supported children and young people to maintain relationships and networks both in the inpatient ward and at home. Friends and family could visit when the individual wanted them to, and there were arrangements for sibling and family overnight stays.

Staff enhanced compassionate care through complementary therapies such as reflexology and Indian head massage. Children and young people responded positively, and feedback showed these therapies brought comfort and relaxation.

The service ran events focused on wellbeing for families and carers, where they could give feedback, receive support, and enjoy complimentary therapies such as hand massage.

Parents participated in care decisions and expressed a strong sense of partnership. One relative told us, “They listen to my concerns. I feel safe leaving my child here.” Staff gave children and young people choices through adapted communication and interaction strategies.

Staff provided spacious, thoughtfully designed family accommodation on site, allowing loved ones to stay close to babies, children, and young people. Families told us this helped them feel supported and connected during difficult moments.

Children, young people, and families were consistently supported to have choice and control over their care, treatment, and wellbeing. The service fostered a culture of independence and empowerment for every child, young person, and family.

The evidence showed a good standard. The service listened to and understood people’s needs, views and wishes. Staff responded to people’s needs in the moment and acted to minimise any discomfort, concern, or distress.

Staff used a variety of tools to communicate with people according to their needs. Staff communicated clearly and compassionately with children, young people, and their families, ensuring everyone understood their care, treatment, and condition. They asked young people what mattered most to them in the moment and took meaningful action to meet those needs wherever possible.

Staff met young peoples’ needs flexibly in a way that reduced barriers to recreation and social activities. For example, access to soft play, the hydro pool and cinema rooms were designed to meet people’s communication and accessibility needs to a high standard. Staff provided emotional support, practical advice, and reassurance when families needed it most. Parents told us the service met their needs and responded swiftly to both clinical and emotional concerns. Staff used an on-call nurse system and followed clear escalation processes to ensure timely and safe care.

The service ensured that help was always readily available, parents could simply pick up the phone and speak to staff whenever they felt worried or felt their child was agitated. The whole team worked together cohesively to resolve concerns promptly and effectively, ensuring families felt listened to, valued, and cared for.

Staff used cameras in bedrooms to support overnight safety between regular observations, which took place at least every 15 minutes. Staff turned off cameras during personal care to protect children’s dignity. Staff told us the cameras were an effective way to monitor safety, and we saw evidence of sleep care plans and consent forms in online records. It was clear these measures were discussed in depth with families prior to admission.

The service provided private, accessible changing facilities for those accessing day care. Where possible, staff took proactive steps to meet the needs of both the young person and their family. This included providing preferred food and drinks, access to loved ones, and sources of comfort.

The evidence showed an exceptional standard. The service always cared about and promoted the wellbeing of their staff and was exceptional at supporting and enabling staff to always deliver person-centred care.

Staff we spoke with were overwhelming positivity about the support they received from leaders. They described managers as approachable, visible, and responsive. Several staff members told us there was an “open door policy” and that they felt confident raising concerns or sharing ideas. One nurse shared how they brought an idea to managers, who responded by opening a business case to explore it further. They told us, “I felt truly listened to.” Another staff member told us they “felt privileged to work there.”

Leaders promoted a culture of openness, kindness, and mutual respect. Staff had access to appropriate rest areas and were encouraged to take their breaks. Leaders ensured emotional support was available, especially during challenging times. One staff member told us leaders had been particularly understanding when they were going through a difficult period at home. Others praised the flexibility offered around working arrangements, saying they felt valued and supported as individuals.

Team leaders offered emotional support and arranged for an external supervisor to lead sessions twice monthly, with additional support available when needed. Staff accessed debriefs after challenging cases, including professional sessions with tertiary teams.

Leaders celebrated staff contributions and recognised the meaningful impact of their work. Staff played a central role in shaping care, and their voices were heard and valued. This culture of empowerment and mutual support fostered strong wellbeing and a sense of pride across the team.

Volunteers were an integral part of the service. Every volunteer we spoke with described feeling respected, valued and welcomed. Many had supported the hospice for several years and spoke warmly about their long-standing involvement. Leaders had clearly cultivated a kind, inclusive environment that encouraged volunteers to remain committed and engaged. There were volunteers and care staff at the hospice who had used the service with their own children and young people. They found the experience so positive they wanted to work for the hospice to support other families going through similar experiences.

Staff received annual appraisals, with over 90% completed at the time of our assessment. Clinical and safeguarding supervision was provided regularly, and professional nurse advocates offered both individual and group support.

A staff survey conducted in March 2025 showed high levels of satisfaction, particularly around respectful leadership, and job fulfilment. While some staff reported challenges around relaxing in their spare time and managing stress, these scores were in line with national benchmarking across similar services. Site-specific data was not available.