Demelza, Hospice Care for Children - Kent

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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

This meant we looked for evidence that people and communities were always at the centre of how care was planned and delivered. We checked that the health and care needs of people and communities were understood, and they were actively involved in planning care that met these needs. We also looked for evidence that people could access care in ways that met their personal circumstances and protected characteristics.

At our last assessment we rated this key question outstanding. At this assessment, the rating for this key question remains outstanding. This meant services were tailored to meet the needs of individuals and delivered to ensure flexibility, choice, and continuity of care. We assessed all quality statements in this key question.

The service truly understood the unique health and care needs of every child and family in its community. Care plans were crafted with attention to physical, emotional, and cultural needs, ensuring every voice was heard and respected. Improvements were driven by the real experiences of those using the service and the wider community, making change meaningful and personal.

The service understood the diverse health and care needs of the children. The hospice encouraged people to share feedback, ideas or raise complaints about care, treatment and support and used the opportunity for learning and improvement. The service worked to reduce health and care inequalities through training and feedback. It also worked proactively with others in the wider system and local organisations to plan care and improve services.

Staff brought sensitivity, flexibility, and profound understanding to each child’s journey, making care meaningful, inclusive, and filled with dignity and hope.

This service scored 93 (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 making sure people were at the centre of their care and treatment choices and they decided, in partnership with people, how to respond to any relevant changes in people’s needs.

Staff placed the individual needs and preferences of children and young people at the heart of care. They tailored every aspect of the service to reflect what mattered most to them and their families. Care plans captured physical, emotional, mental, and social needs, including those linked to protected characteristics under the Equality Act 2010. Families consistently told us they felt truly seen and heard. One relative said, “All of our child’s wishes were considered and the end of life care could not have been better.”

End of life care pathways were deeply individualised. Families received ongoing bereavement support long after their child’s death. The service held interfaith cafés to promote understanding of diverse spiritual needs, helping staff deliver culturally sensitive care. A music therapist worked closely with a parent from a different cultural background to honour their beliefs. After their child’s death, gentle music was played to guide the child’s soul to another life, in line with the parent’s wishes This deeply respectful approach reflected the service’s commitment to holistic care in life and death.

Leaders told us how staff had supported two family’s wishes for compassionate extubation in the peaceful setting of the hospice’s hydro pool and in the gardens. Compassionate extubation is the process of intentionally removing a patient from mechanical ventilation, typically a breathing ventilator, in a way that prioritises comfort, dignity, and respect for the patient's and family's wishes, especially in end of life care.

Although clinically complex, the procedure was safely led by an external Specialist Transport Team in collaboration with hospice staff. The team included a palliative care consultant, a retrieval nurse or doctor, and paramedics. Their presence ensured the patient’s final moments were calm, dignified, and surrounded by nature and loved ones. The service carried out thorough risk assessments beforehand and followed established policies after extubation.

The service delivered spiritual and religious care with sensitivity, compassion, and a personalised approach. Staff provided meaningful support to families navigating complex emotional and care needs, ensuring their beliefs and values were respected throughout. The hospice had access to faith representatives to enable blessings or rituals surrounding end of life.

Staff respected and celebrated cultural traditions. For example, they supported a child’s Christmas tradition by helping them leave polished shoes outside their door for Saint Nicholas to fill with gifts on 6 December.

Children and young people had a strong voice in shaping the service. The ‘Be Seen, Be Heard, Young Voices’ group offered opportunities for feedback through fun activities. Staff displayed the feedback on posters throughout the hospice, alongside responses showing how improvements had been made and to close the feedback loop.

Staff encouraged children and young people to make their own decisions. We saw a child choose their own activities and communicate their preferences. When one child struggled to eat, staff offered adapted cutlery so they could continue feeding themselves independently.

Staff made meaningful adjustments to ensure care was truly personalised. The service adapted rooms, such as creating themed bedrooms tailored to children’s interests. An example was a bedroom that was transformed into a princess themed space for a child who loved a particular children’s film. The service arranged for another child who adored dogs to be visited by their pet dog. Bedding and décor reflected each child’s personality, and bereavement suites were personalised to reflect cultural and spiritual wishes. Education was supported where appropriate. One child was supported to attend online nursery sessions to maintain learning and a sense of normality.

Staff and leaders identified gaps in care and responded with innovation and compassion. For example, the service introduced a transitional navigator to support gaming as a therapeutic tool and to bridge the gap between children’s and adult services. The transition team supported young people aged 14 to 24 and their families through key life milestones, ensuring continuity of care and fostering community connections.

The service had a clearly defined transition pathway with milestones. Staff held Teen weekends twice a year, which gave young people the chance to build friendships, experience peer support and enjoy social activities. When hydrotherapy was discontinued for over 18s, staff recognised the importance of maintaining mobility and comfort and introduced twice-weekly hydro sessions. The service held quarterly activity days for young people aged 18 to 24 to help reduce isolation and promote wellbeing.

The evidence showed an exceptional standard. The service had an exceptional understanding of the diverse health and care needs of people and their local communities, so care was joined-up, flexible and supported choice and continuity.

Staff and leaders demonstrated a remarkable understanding of the diverse health and care needs of children, young people, and their families. They delivered flexible, joined-up care that supported choice, continuity, and dignity.

The service worked closely 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, helping them access the full range of support available. Leaders maintained strong links with NHS hospitals and consultants, promoting integrated care and collaboration across services.

The hospice operated 10 inpatient beds but deliberately limited occupancy to 5 at a time. Leaders explained this approach allowed for safe, one-to-one care and ensured capacity for emergency admissions.

Demelza supported over 2,400 families. We could not get site specific data. Leaders shared an awareness that babies, children, and young people in England with a life limiting condition had tripled in the last 20 years.

Leaders looked at data and listened to families and carers and responded by redesigning their model of care, aimed to deliver more equitable, personalised care. They planned to move away from traditional hospice structures, to implement a new, needs-led, and data-informed approach called ‘Circles of Care,’ with full rollout to be implemented by August 2025. Leaders emphasised that this model remained flexible and could be adapted to meet changing needs of individuals.

The model consisted of 3 areas, which could overlap depending on the baby, child, or young person’s circumstances:

The service maintained their Family services, which they continued to offer to all families, this included access to family liaison, bookable experiences, transition support, sibling support, family events, and referred services such as, counselling.

They intended to offer Specialist Short Breaks to children with the most complex care needs, this offered tailored respite support.

The service planned to provide Specialist Nursing Care to children requiring symptom management and end of life care.

Families accessing the specialist short breaks or nursing care also received family services. Babies, children, and young people could progress through the areas if they required. Leaders told us that they had tripled the family services caseload to enable equity in access.

Leaders and staff had been implementing the new model gradually to ensure a smooth transition and to prevent any booked respite being cancelled abruptly. Most families we spoke with understood the change and appreciated the clear, compassionate communication provided by the service.

The service made continuity of care a priority. Each child or young person had named nurses who built trusting relationships and ensured consistency in care delivery. The service allocated patients to the same care staff whenever possible to support continuity of care.

The music therapy team built evidence-based practice into their service. Staff were aware that music could improve babies’ respiration rates and music could act as a distraction from pain during invasive procedures. The music therapist attended hospital baby units, appointments, or home to play music to offer needed distraction for babies and children and young people.

The service provided grief journals to bereaved families following feedback received. They shared information on the benefits of journalling or noting thoughts down when grieving. The service encouraged families to join their bereavement steering group. The groups met every other month along with hospice staff to share ideas and experiences. This was to help shape the bereavement care that was offered.

The hospice offered a befriending service. This was run by trained and dedicated volunteers who could offer a listening ear over the phone or a coffee to support people through difficult stages.

The evidence showed a good standard. The service supplied appropriate, accurate and up-to-date information in formats that were tailored to individual needs.

People had access to information and advice that was accurate, up-to-date, and provided in ways they could understand. Staff communicated to patients and their families in ways they could understand.

Staff recorded patients’ communication needs in their individual care plans in line with the Accessible Information Standard (AIS). Thisisaframeworkdesignedtoensurethatindividualswithdisabilities,impairments,orsensorylossreceiveappropriateinformationandcommunicationsupport.

Staff worked within relevant policies to protect people’s information and confidentiality. The service had clear information governance processes in line with relevant legislation. Policies reflected the need to make referrals to external bodies, such as local authorities. All staff completed General Data Protection Regulation (GDPR) training.

Leaders told us they had phone interpreters if needed for different languages and face to face interpreters could be sought if required. The referral form included a section asking patients their first language to understand if interpreters were needed. Leaders told us key documents were translated into different languages, an example of this was their guide to services document. The option to translate documents was also available on their website.

Staff told us how they communicated with patients, including, Makaton, picture cards, and the development of sensory story boxes. Information could be accessed in braille if required, staff told us this has been done in the past and could be tailored to individual need. Makaton is a communication programme that combines signs, symbols, and speech to support people with speech and language difficulties, including those with learning disabilities, autism, Down syndrome, or neurological conditions.

Staff told us that information was tailored to individual needs. It was clear that the service focused on involving patients in communication.

The evidence showed an exceptional standard. The service was exceptional at enabling people to share feedback and ideas, or raise complaints about their care, treatment, and support. Staff always involved people in decisions about their care and told them what had changed as a result.

Staff always empowered people who used the service to have a voice and realise their potential. They showed determination and creativity to overcome obstacles to delivering care. People who use the service and others were involved in regular reviews of how the service manages and responded to complaints.

The service had a family engagement lead and allocated engagement staff to each family. It was evident that this role supported improved communication and feedback. Families were provided with ‘in touch’ newsletters that shared information on event dates, sibling get together and bereavement cafes.

Staff and leaders placed children, young people, and their families at the heart of the service. Their voices shaped care, and their feedback drove meaningful change. Everyone we spoke with knew how to give feedback about their experiences of care and knew how to escalate concerns. There were clear guides on how to complain and give feedback. The service demonstrated where improvements had been made as a result of learning from reviews.

There were no open or recent formal complaints in the 12 months leading up to the assessment. We saw constructive feedback provided by families and how the service followed up and acted upon feedback provided. Leaders made sure they closed the feedback loop with families. In the most recent board report, we saw there was 17 feedback reports received. Of these reports, 16 were positive and 1 was neutral/mixed in feedback.

The service encouraged feedback, and it was evident that patient and family voices were valued. The service had held focus groups for families to discuss the implementation of the Circles of Care model. The service had provided a dedicated hotline number for families after they communicated plans to implement the new model of care.

Leaders told us that there was a total of 12 appeals regarding the new Circles of Care model, which they described as low overall. Families were encouraged to give feedback, and 8 drop-in sessions were provided around the new model of care. Leaders told us that most people understood the change however they were still offering opportunities for feedback. Leaders told us they had been looking at appeals on a case-by-case basis. Leaders were keen to understand the impact the change may have on families who were previously able to access respite stays. Leaders added the implementation of Circles of Care to the risk register to monitor it closely.

The service created multiple avenues for feedback, including QR codes, closed social media groups, emails, surveys, events, and direct contact. Family communication focus groups were held regularly, and outcomes were shared through ‘Voices Heard, Changes Made’ newsletters. It was clear that feedback directly influenced care delivery. For example, one young person asked why only games and films aimed at younger children were available. In response, the service introduced age-appropriate content in designated areas, ensuring safety and inclusion for all age groups.

The evidence showed a good standard. The service made sure that people could access the care, support, and treatment they needed when they needed it.

The service’s strategy focused on delivering inclusive care that reflected the diversity of the local population. Staff actively included people from minoritised groups, ensuring their caseloads aligned with the communities they served. Success meant meaningful engagement with individuals from a wide range of backgrounds, particularly those from underrepresented and minority groups.

The service worked flexibly to support families during inpatient stays, increasing stays where needed.

The service identified a gap in access for expectant parents, neonates, and babies under 1 year with life limiting conditions and responded by improving accessibility for these groups.

Leaders explained that the implementation of Circles of Care was going to be regularly reviewed to ensure families received the right support at the right time. The service had engaged extensively with families and following feedback from families, leaders had further refined the model to promote fairness and equity, ensuring access was based on individual need rather than fixed criteria.

The service acknowledged that this meant some families who were previously offered specialist short breaks, may no longer have access to these services. Leaders were committed to keeping this under review.

Leaders made sure that urgent referrals were managed effectively, and we saw evidence of this. Within the last year, most urgent referrals to the service were accepted within 2 days. Non urgent referrals varied, with the majority being accepted within 30 days. The service had been collecting this data since May 2024. There was no data on referral times for providers for children’s palliative care at the time of the assessment. The service initially set a target for 60 days but were aiming to reduce this to 30 which aligned with their average performance.

The service contacted families who chose not to access the service twice a year. They wanted to provide opportunities for families in case they changed their minds. This was in line with their strategy to extend their reach.

Volunteers at the service helped patients, families, and carers to attend the service when they had no transport.

The facilities provided space to care for people with physical disabilities, therefore, ensuring that services were accessible. This included a changing space bathroom that was available for families using the service. This increased the ability of people with disabilities and their families to enjoy the activities the service offered.

Care plans contained moving and handling assessments and personal emergency evacuation plans for both in the service and home environment.

Staff knew how to escalate concerns and who to contact if an emergency occurred. Staff were able to provide examples. Staff told us they had appropriate support in place for emergencies. There was an on-call system for managers outside of usual business hours.

The evidence showed an exceptional standard. Staff and leaders were innovative in how they listened to information about people who are most likely to experience inequality in experience or outcomes. Staff and leaders actively used this information to provide exceptionally tailored care, support, and treatment in response to this.

Staff at all levels showed a clear and sustained commitment to valuing every individual regardless of background, identity, or personal circumstances.

We saw examples of how staff were inclusive and made adjustments to support equity in peoples experiences and outcomes. This approach was integral to the organisation’s equality, diversity, and inclusion (EDI) framework and shaped the compassionate, person-centred care that was clear throughout the service.

Leaders were aware and did not shy away from the considerable change and rise in numbers in the clinical complexities and children and young people who used the service.

Leaders were proactive and sought ways to address barriers to improving people’s experience. For example, the service had introduced the Circles of Care model. This included new multidisciplinary strategies aimed at improving both the reach and quality of support for families.

Whilst this model did change the availability of short breaks for some families, it enabled the service to be more accessible and inclusive to children and young people with the highest complex needs. It also meant that children and young people with less complex needs and their families, could still access integral areas of the service. The families in the Family Services Circle could continue to access, family liaison, sibling support, transition support, bookable experiences including counselling, complementary therapies, and practical support from volunteers. Staff recognised and respected people’s individual needs. They delivered personalised care that reflected people’s preferences, beliefs, and customs. Care and support were provided with sensitivity, and staff showed cultural awareness in their interactions.

The environment promoted equality and inclusivity, ensuring that all individuals felt safe, welcomed, and respected. Staff and leaders were alert to discrimination and inequality that could disadvantage diverse groups of people using their services. They regularly engaged with local communities to understand the specific issues around palliative and end of life care with a view to improving their understanding and people’s experience.

Staff visited local hospitals to offer symptom control and support to those who were too unwell to leave the hospital.

The service facilitated bereavement cafés that encouraged peer support and connection. These sessions were flexible and responsive to feedback. For example, when a participant shared that no events had been held near their hometown, the service arranged for the next café to take place in that area.

The evidence showed an exceptional standard. People were given exceptional support to plan for important life changes, so they could make informed decisions about their future, including at the end of their life.

The service involved staff in their 5-year strategy with clear plans for Equality Diversity and Inclusion (EDI). Leaders and staff viewed this plan as an opportunity to make sustainable change and ensure the service was a place everyone could feel welcome, valued and treated fairly. The strategy was built with clear goals and Key Performance Indicators (KPIs) to track progress. The service was on track to meet its identified goal of increasing its caseload to support 500 new families and 250 new expectant parents, neonates, and babies under a year old.

Staff consistently empowered children, young people, and their families to make informed decisions about their future, including at the end of life. They prioritised dignity, choice, and emotional wellbeing, and worked with sensitivity to ensure care reflected what mattered most to each individual.

We observed staff enabling independence wherever possible. In one example, a staff member supported a child in the dining area to feed themselves, rather than taking over, demonstrating a commitment to promoting autonomy and self-worth.

Families who had accessed end of life care at the service spoke with deep gratitude. Every person we spoke with told us the service had respected their child’s wishes. Several families described the care as “going above and beyond.”

Spiritual and emotional support was woven into every aspect of care. Staff showed deep compassion and respect for individual beliefs, ensuring that children and families felt safe, understood and valued throughout their journey.

Staff and leaders did not shy away from difficult conversations. Families appreciated this honest and compassionate approach, and feedback confirmed that open communication helped them feel prepared and supported.

Staff worked closely with families and external professionals to ensure care planning was collaborative and holistic. Multi-agency involvement was a core part of the service’s approach. Advance Care Plans were aligned with the nationally recognised Recommended Plan for Emergency Care and Treatment document (ReSPECT) framework and reflected each child’s and family’s priorities, covering preferred place of care, symptom management and end of life wishes.

Staff personalised care planning in meaningful ways. They created themed bedrooms, supported memory-making activities, and honoured cultural rituals. Their focus was not only on clinical care but on creating warm, lasting memories for families.