Demelza, Hospice Care for Children - Kent

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

This meant we looked for evidence that people and communities had the best possible outcomes because their needs were assessed. We checked that people’s care, support, and treatment reflected these needs and any protected equality characteristics, ensuring people were at the centre of their care. We also looked for evidence that leaders instilled a culture of improvement, where understanding current outcomes and exploring best practice was part of their everyday work.

At our last assessment we rated this key question as good. At this assessment, the rating has remained good. This meant people’s outcomes were consistently good, and people’s feedback confirmed this. We assessed all quality statements in this key question.

We found the care and treatment provided by the hospice was effective. Children, their families, and carers participated in assessment reviews. Staff completed holistic assessments using an integrated approach. Care and treatment provided was evidence based, measurable and monitored for outcomes which enabled continuous improvement.

Staff demonstrated a good understanding around the importance of capacity and consent.

This service scored 79 (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 a good standard. The service made sure people’s care and treatment was effective by assessing and reviewing their health, care, wellbeing, and communication needs with them.

Families and carers told us that staff were excellent at discussing the needs of children and young people. They told us that they were able to participate in the planning of care and were confident they were listened to.

The service had a thorough approach to planning and coordinating children and young people’s move into the service. This was done at the earliest possible stage and arrangements fully reflected individual circumstances. Plans were developed collaboratively with families and the wider multidisciplinary team, including preferences around symptom management, place of care, organ and tissue donation, and meaningful experiences at the end of life.

The service had a clear assessment process for identifying and monitoring patients’ individual needs. Staff used a holistic approach to care planning which was evident in the care plans we reviewed. We saw examples of staff continuously assessing people’s needs and adapting care to meet those needs and keeping this up to date.

The pre-assessment team had a comprehensive process. We saw examples of assessments relating to patient needs, such as behaviour plans, pain management, nutrition, play, preferences, hobbies, and interests. The service had a strong and well-embedded approach to advance care planning, ensuring that each child and young person’s medical needs, personal wishes, and family values were sensitively explored and clearly documented. Communication aids and a sign language interpreter were available to support people to express themselves if needed.

We saw examples of this in the care plans we viewed. Staff told us this was updated prior to visiting the service and could provide examples of how this was beneficial for children and young people. One relative told us that it was a child led environment, and their child was “enabled to do exactly what they wanted to do’’.

Staff assessed children’s nutritional and hydration needs prior to admission. They planned catering ahead of stays to meet special dietary requirements and preferences of children, young people, and their families. The pre assessment team carried out necessary risk assessments prior to admissions.

The service had a dedicated behaviour lead, who delivered training to staff internally as well externally. The behaviour lead also communicated and visited schools to extend knowledge on managing challenging behaviours.

The evidence showed a good standard. The service planned and delivered people’s care and treatment with them, including what was important and mattered to them. Staff did this in line with legislation and current evidence-based good practice and standards.

Staff and leaders understood current legislation, national standards, and evidence-based good practice guidance relevant to their service and applied these effectively. They had good systems for ensuring they kept up-to-date and embedded this in the service. For example, the service had aligned their care plans to national guidance and evidenced based practice such as Together for Short Lives UK and National Institute for Health and Care Excellence (NICE) guidance: End of life care for infants, children, and young people with life-limiting conditions: planning and management.

The service had effective care planning. This was strengthened by second nurse checks on admission. Staff regularly reassessed needs particularly around medicines, safety, and personal care.

Staff were competent and confident providing care to patients with complex and specific needs. For example, we observed nursing staff care for children with complex medical needs confidently and with ease.

The evidence showed a good standard. The service worked well across teams and services to support people. Staff made sure people only needed to tell their story once by sharing their assessment of needs when people moved between different services.

Staff, teams, and services worked with children, young people, and their families to effectively deliver coordinated, timely, consistent, person-centred care, support, and treatment.

Staff encouraged families and carers to participate in goal planning and advance care conversations.

The service maintained service level agreements with several stakeholders who worked with the hospice to meet the needs of patients. This included local GPs, who were available on call to prescribe medicines in both hospice and community settings, assess clinical needs and engage with the patients’ consultants when needed. Staff told us teams communicated effectively and collaborated well with external partners.

The service had clear communication links, which allowed staff to share important information effectively when people moved between services. Staff recorded multidisciplinary (MDT) meetings. These conversations included input from medical staff, senior nurses, and community teams. The service had access to an occupational therapist, counsellors, speech and language therapists and physiotherapists.

Leaders told us that staff attended local schools and NHS hospitals to provide education on the services the hospice provided.

The evidence showed an exceptional standard. The service always supported people to manage their health and wellbeing to fully maximise their independence, choice, and control. The service supported people to live healthier lives and where possible, reduce their future needs for care and support.

Staff provided specialist sessions including complementary therapy, art and music therapy, aquatic therapy, physiotherapy, occupational therapy, life skills, and both advance and anticipatory care planning.

The service invited families to access counselling and take part in memory-making activities, such as family outings and personalised bereavement support. Staff actively advocated for these experiences, which enhanced emotional wellbeing.

The service organised regular visits from therapy dogs, who offered companionship and reduced stress and anxiety for children, families, and staff. Leaders shared evidence of their positive impact, including improved mood, reduced isolation, and increased happiness.

The service offered a self-referral system for volunteer-led support, including DIY, gardening, transport, and home help such as shopping, pet care, food preparation, and cleaning. Volunteers expressed pride in their contributions.

Staff assessed the needs of families and carers across care settings and took action to meet them. One relative described the service as “amazing,” highlighting the benefits of access to yoga, time for self-care, and volunteer support with home decorating and gardening.

The service offered families, staff, and volunteers the opportunity to join a choir, which fostered connection and wellbeing. Feedback showed 100% of participants reported improved confidence, emotional health, and social bonds.

Staff also provided health promotion advice and signposted families to local organisations for additional support. Care was consistently based on individual needs, with a strong focus on reducing future care requirements and enhancing quality of life.

The evidence showed a good standard. The service routinely monitored people’s care and treatment to continuously improve it. They ensured that outcomes were positive and consistent, and that they met both clinical expectations and the expectations of people themselves.

Leaders empowered staff to improve patient outcomes and regularly sought their feedback. The service used local audits and external benchmarking to evaluate the effectiveness of care. The service partnered with a not-for-profit organisation to measure healthcare quality against recognised standards and benchmarked its performance against other children’s hospices. Leaders shared this data to promote learning and improve future outcomes.

The service sought and considered feedback from families, carers, professionals, and other stakeholders as appropriate when monitoring individual outcomes. For example, the service also collected the feedback of parents and carers to measure outcomes.

Leaders shared patient stories at every board meeting, ensuring lived experience remained central to service development. Leaders engaged with a range of faith groups to better understand and support diverse cultural needs in end of life and bereavement care. Leaders drew attention to the increasing number of families requiring their service. In April 2025, the service significantly expanded its bereavement support by 20%, strengthening its commitment to inclusive and compassionate care.

Multidisciplinary team (MDT) working ensured care plans were current and supported patient safety. We reviewed detailed plans for behaviour, epilepsy, and symptom management, each clearly outlining expected and agreed outcomes.

Staff consistently used audits, clinical pathways, and MDT meetings to maintain high standards. We reviewed MDT meeting minutes that showed clear actions and goals were set, followed up, and used to enhance care quality and outcomes for babies, children, and young people. Some examples of audits that the service carried out were audits of care plans, community equipment and Advance Care Plans. We reviewed a range of audits, including IPC, moving and handling, and medicines audits. These showed consistently high compliance rates.

Leaders monitored clinical outcomes, including preferred place of death data, and used this information to shape care delivery. Leaders shared the importance of awareness for this data and how it can improve end of life care. The data highlighted an alignment with Advance Care Planning and how wishes were respected, especially for those who wanted end of life care at hospice or home. We saw the last 12 months of preferred place of death data. Out of 14 deaths, 12 patients were supported to have their preferred place of death. The data did show that on 2 occasions the preferences of preferred place of death were unclear or not completed, which could have indicated an area for improvement.

The evidence showed a good standard. The service told people about their rights around consent and respected these when delivering person-centred care and treatment.

Staff respected people’s rights around consent and made sure individuals were informed and involved in decisions about their care. They actively supported patients, families and carers to make choices that reflected their values and preferences.

The consent policy followed national guidance, including the Department of Health’s Reference Guide to Consent for Examination or Treatment (2009), the Mental Capacity Act 2005 (MCA), and Deprivation of Liberty Safeguards (DoLS). The policy clearly outlined different types of consent and explained who could give consent under and over the age of 16, including where capacity was lacking.

Staff understood their responsibilities and demonstrated this in practice. We observed staff gaining consent appropriately and sensitively while caring for patients. They adapted their approach to meet individual needs, particularly for children and young people who were non-verbal, using communication aids to ensure consent was meaningful. Staff recorded consent clearly in care plans.

The service had clear policies around parental responsibility, admission consent, and information sharing. These helped staff and families work together to protect the wellbeing of babies, children, and young people. Staff understood the principles of best interest decision-making. When children or young people lacked capacity, staff involved families wherever possible to ensure decisions reflected the child’s best interests and family values.