Demelza, Hospice Care for Children - Kent

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• Overview
• Shared direction and culture
• Capable, compassionate and inclusive leaders
• Freedom to speak up
• Workforce equality, diversity and inclusion
• Governance, management and sustainability
• Partnerships and communities
• Learning, improvement and innovation

This meant we looked for evidence that service leadership, management and governance assured high-quality, person-centred care; supported learning and innovation; and promoted an open, fair culture.

At our last assessment we rated this key question good. At this assessment, the rating for this key question remains good. This meant the service was consistently managed and well-led. Leaders and the culture they created promoted high-quality, person-centred care. We assessed all quality statements in this key question. Leaders had the skills, knowledge, and experience to deliver outstanding care and treatment. Leaders were open and transparent and driven to continuously improve. They proactively supported staff and collaborated with partners to deliver care that was safe, integrated, person-centred, and sustainable, and to reduce inequalities.

We found evidence that there was an inclusive and positive culture of continuous learning and improvement that was based on meeting the needs of people who used services and wider communities.

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 had a shared vision, strategy, and culture. This was based on transparency, equity, equality and human rights, diversity and inclusion, engagement, and understanding challenges and the needs of people and their communities.

The service vision was ‘To see a world where children and young people with serious or life-limiting conditions, and their families, have access to personalised, expert care enabling them to live the best lives they can.’ They had a strategy for 2022 to 2027 developed through an understanding of local needs and challenges. The strategy was based on the findings of 6 consultation workshops. These included trustees, volunteers, operational and leadership team members, and families across all 3 sites. The strategy was monitored by the success of objectives and recorded onto a strategic risk register. The strategy was also discussed at board meetings.

The service’s 5 objectives encompassed being effective, doing more, extending their reach, the people, and to strengthen and sustain. The service strategy was influenced by family engagement and stakeholders.

The strategy supported the new Circles of Care model. The service had a strategy and supporting objectives that were stretching and challenging, but realistic and achievable.

The strategic plan was developed over a five-year period and regularly shared with staff, children, young people, and their families. This transparent approach ensured that ongoing improvements were shaped by those at the heart of the service, promoting meaningful involvement and continuous development.

Leaders were able to give us examples of succession planning. It was evident that they were able to recognise talent and supported their staff for internal development. Leaders had an awareness of service development needs, for example, the recruitment of a Consultant Paediatrician with a special interest in paediatric palliative care.

The service had a strong organisational commitment and effective action towards ensuring equality and inclusion across the workforce. There were high levels of satisfaction across all staff. The service had a ‘grow your own’ initiative where health care assistants (HCAs) were supported and paid their HCA wage to undertake nursing associate (NA) or registered nurse (RN) training.

Staff consistently reported feeling highly valued, respected, and well supported in their roles. A strong, person-centred culture was evident across the organisation, with collaborative, respectful, and appreciative relationships among team members. There was a shared commitment to delivering high-quality, compassionate care, which staff described as a core motivation in their work. They demonstrated a clear understanding of the organisation’s strategic aims and felt actively involved in shaping the direction of the service

The evidence showed an exceptional standard. The service had exceptionally inclusive leaders at all levels who understood the context in which they delivered care, treatment and support and embodied the culture and values of their workforce and organisation. Leaders had the skills, knowledge, experience and credibility to lead effectively. They always did so with integrity, openness and honesty.

Leaders demonstrated the skills, knowledge, and experience needed to excel in their roles. They clearly articulated how teams worked together to deliver high-quality care. Leadership development opportunities were available, including opportunities for staff. This was evident when speaking to both leaders and staff.

Staff we spoke with told us leaders were always visible, supportive, and approachable. They told us that leaders fostered an open-door culture and were easily accessible. Staff consistently told us they felt proud to be part of the organisation, highlighting a sense of purpose and alignment with the service’s values and direction. Every member of staff we talked with showed they lived the organisational values and beliefs without exception. It was notable that there was no sense of hierarchy within the service when communicating with staff.

One staff member told us that the service was flexible to work for and supported them to work certain shifts that worked for them and their family.

It was evident that leaders fostered a kind and inclusive culture. There were consistently high levels of constructive engagement with staff and people who used the service, including equality groups.

Staff were recognised for working hard, an example of this was a monthly ‘box of joy’ awarded to staff members for going above and beyond.

The service had an online recognition system which gave staff and leaders the ability to praise other staff members.

Volunteers we spoke with were highly complementary of the leadership team and felt respected by their peers and leaders.

Leaders supported and encouraged staff to attend meetings. There were regular HCA and nurse meetings. Leaders encouraged attendance of staff who were not scheduled to work, by allowing them to claim hours for attending.

Leaders told us about a team day that followed mandatory training every year, to enhance team working, wellbeing, and build strong relationships amongst staff. Staff fed back that this helped to break down barriers and made them feel valued and supported.

The evidence showed a good standard. The service fostered a positive culture where people felt they could speak up, and their voice would be heard.

Staff we spoke with felt that managers listened to concerns. Staff were encouraged to share their views and told us that they felt comfortable to do so.

Staff knew how to access the Freedom to Speak Up Guardian who supported staff in raising concerns. Staff had completed Speak Up training. One staff member told us leaders were always open to discussion and had no worries about raising concerns to them.

The service offered ‘My Voice’ initiatives including cafes for staff to attend and share thoughts, ideas, and feedback. The service had a dedicated email, which staff could use to share ideas and feedback with leaders.

Leaders told us staff could raise concerns with an external and confidential Freedom to Speak Up Guardian or that they could raise concerns with leaders at other sites if they felt more comfortable doing so.

Children, young people, and families were encouraged to raise any concerns. This could be done on the website, on the phone, by email or in person. They were given opportunities to meet with leaders to give feedback. Patient and families participated in decision making about the service. For example, by contributing to the Family Voices Group.

The evidence showed a good standard. The service valued diversity in their workforce. They worked towards an inclusive and fair culture by improving equality and equity for people who work for them.

Equality and diversity were actively promoted, and work was undertaken to identify the causes of any workforce inequality. The service made sure equality, diversity, and inclusion (EDI) were key aspects of the service. Leaders appointed a trustee as an EDI lead. We saw evidence of an up-to-date EDI policy that staff could access online. The service had an EDI impact statement on their website. This celebrated and embraced the unique differences people bring to promote a creative and forward-thinking organisation.

The service had embedded 6 core principles; Fairness, Respect, Equality, Diversity, Inclusion and Engagement (FREDIE) into its work. This included monthly FREDIE meetings and wellbeing steering groups. As a result, the service earned the Silver Investors in Diversity Accreditation in 2024, recognising its commitment to inclusion, equality, and continuous improvement.

Leaders provided EDI training modules that were available for all staff, including Race, and Ethnicity Inclusion, FREDIE, and Wellbeing and LGBTQIA. The overall compliance was 96%. However, this was not site specific.

As well as mandatory FREDIE training and wellbeing training, staff had access to 4 other external EDI training modules, delivered virtually and face to face.

Staff told us they found the service to be an inclusive environment and that there were equal opportunities available to them.

Leaders had completed a gender service pay gap report that summarised the pay for each gender and showed staff were paid according to their role not their gender.

The evidence showed a good standard. The service had clear responsibilities, roles, systems of accountability and good governance. They used these to manage and deliver good quality, sustainable care, treatment, and support. They act on the best information about risk, performance, and outcomes, and share this securely with others when appropriate.

The senior leadership team remained accountable to the board of trustees, with the chief executive officer and subcommittees presenting regular reports at quarterly board meetings.

Leaders held regular meetings to review performance, quality, and risk. The clinical governance committee met quarterly, whilst the clinical governance team met monthly to maintain oversight. The senior leadership team met fortnightly, with deputy directors attending every six weeks to ensure continuity and shared decision-making.

The service closely monitored community teams. Leaders discussed their work at both board and governance meetings. A governance management group reviewed clinical risk, feedback, audits, complaints, incidents, policies, and training compliance. Policies were reviewed and ratified by the board or subcommittees, and risks were managed through a corporate and clinical risk register with clear mitigating actions.

Staff used clinical audits to assure quality, including audits on medicines management and infection control. The service followed an annual audit plan shaped by significant events such as incidents and feedback. Leaders shared audit results through governance committees, team meetings, and newsletters to ensure transparency and learning.

Staff understood their roles and accountabilities and knew who to report to. They remained committed to maintaining high standards and improving the quality of care. Leaders encouraged collaborative working and involved staff in discussions about performance and service development.

The service also demonstrated a commitment to environmental responsibility. They had a sustainability strategy and policy in place and worked with an external partner to calculate their carbon footprint. Leaders monitored progress with the aim of becoming carbon neutral by 2050.

The evidence showed a good standard. The service understood their duty to collaborate and work in partnership, so services work seamlessly for people. Staff shared information and learning with partners and collaborate for improvement.

The service worked closely with partners, including, NHS tertiary centres, local NHS hospitals, and other charitable organisations, such as Young Lives Vs Cancer.

Leaders worked collaboratively with other agencies nationally, including Hospice UK, Together for Short Lives UK, Business Development Groups, comparable children’s hospices, and various networking groups to share best practice and work towards shared objectives.

The service actively partnered with the South of England Collaborative Paediatric Palliative Care Education Network to develop a dedicated education and training platform for paediatric palliative care.

The service hosted a dedicated event for funeral directors and provided bereavement training to corporate partners, strengthening relationships and expanding community engagement.

The service partnered with the National Centre of Diversity and had adopted FREDIE in line with their framework.

The evidence showed a good standard. The service focused on continuous learning, innovation and improvement across the organisation and local system. Staff encouraged creative ways of delivering equality of experience, outcome, and quality of life for people. Staff actively contribute to safe, effective practice and research.

The service fostered a strong learning culture, and staff were committed to learning and improvement. Staff told us leaders encouraged them to speak up about new ideas and that their ideas were welcomed. For example, the introduction of gaming referrals.

The service had a digital transformation strategy which included making their technology more effective. They intended to use technology to make the service more accessible to those who accessed support.

Leaders were open, honest and had plans in place for gaps in the service, for example, the need for a medical lead and outreach to hard-to-reach communities.

Peer-led programmes and family voice integration were embedded in the design of service delivery, and coproduced with families, an example of this was the Circle of Care model. The provider supported staff to network across their specialty regionally and nationally to build relationships with other providers and set up research.

The service had a ‘grow your own model’ to reduce the vacancy gap by supporting HCAs and Nurse Apprenticeships (NA) through the Nurse Apprenticeship Programme.

The service engaged in collaborative efforts with adult hospices and services throughout the southeast region. They were actively involved in external projects focused on collaboration with young individuals aged 16 to 25 with severe learning disabilities. The aim was to capture patients’ experiences, preferences, and perspectives. The goal was to influence both local and national policies.

The service implemented a new neonatal pathway, and criteria created to provide rapid support for premature babies from 22 to 27 weeks. This was responsive to the Office for National Statistics guidance that suggested that infant deaths were the highest between 22 and 23+6 weeks gestation. Babies born between 22 to 24+0 weeks could access rapid support from the service without having to wait for the referral to be discussed at referral panel.

The service held an EDI accreditation and was proudly named Kent Charity of the Year in 2024, recognising its commitment to inclusion and community impact.