Demelza, Hospice Care for Children - Kent

The service includes a nine bed In-Patient Unit (IPU), a Day Care, a Community Team, a Family Support Team and a Therapy Team. The Community Team supports children, their parents and siblings with symptom management and end of life care in their own homes. Over the course of our inspection, six children were staying in the hospice, seven to ten children and young people used the day care and 24 children were supported in the community. Services are free to families and the hospice is largely dependent on donations and fund-raising by approximately 1200 volunteers in the community.

This inspection was carried out on 15 and 16 August 2016 by three inspectors and one pharmacist specialist. It was an unannounced inspection.

The provider included a Chief Executive Officer and a board of Trustees. There was a manager in post who was registered with the Care Quality Commission (CQC). A registered manager is a person who has registered with the CQC to manage the service. Like registered providers, they are ‘registered persons’. Registered persons have legal responsibility for meeting the requirements in the Health and Social Care Act 2008 and associated Regulations about how the service is run. The registered manager was also the Director of Care and oversaw the running of the service. They were part of a senior leadership team that included a director of people and resources, a director on income generation and a director of finance.

Staff were trained in how to protect people from abuse and harm. They knew how to recognise signs of abuse and how to raise an alert if they had any concerns.

There were sufficient care and nursing staff on duty, to support and care for children and young people in the In-Patient Unit, the Day Care and in the community. Staffing levels were calculated and adjusted according to children’s changing needs. Staff had appropriate training and experience to support children and young people with their individual needs. There were thorough recruitment procedures in place which included the checking of references.

Risk assessments and symptom management were centred on the needs of the individual. Each risk assessment included clear measures to reduce identified risks and guidance for staff to follow to make sure children and young people were protected from harm. Medicines were ordered, stored, administered and disposed of appropriately as per legal requirements.

There was an effective system in place to ensure people remained as safe as possible from the risk of acquiring an infection. The premises were cleaned to a high standard. Throughout the service, fittings and equipment were regularly checked and serviced.

People said they were extremely satisfied about the way staff gave them the care they needed. They told us, “The staff work with us the family, we work together” and, “The staff understand they have to be flexible and they adapt to us, not us to them.”

Staff knew how to communicate with each person and understood their individual needs.

Consent was sought, obtained and recorded before any aspect of children and young people’s care and treatment was carried out. Staff formed close and positive relationships with children, young people and their families, and often went beyond the scope of their duties to show they cared.

The CQC is required by law to monitor the operation of Deprivation of Liberty Safeguards (DoLS) which applies to hospices. Staff were trained in the principles of the MCA and the DoLS and were knowledgeable in the main principles of the MCA that they applied in practice. They assessed young people’s mental capacity when necessary and when applicable they held meetings to make decisions on their behalf and in their best interest.

Staff protected children and young people effectively from the risks of poor nutrition, dehydration, swallowing problems and other medical conditions that affected their health. A relative told us, “The food is always lovely.”

People were referred to specialists and healthcare professionals when necessary and their advice was sought and acted on.

The premises had been adapted to specifically meet children and young people’s needs. They were well designed, welcoming and well maintained. Relatives described the suitability and adaptations of the building and décor as, “extraordinary” and, “amazing.”

Staff were skilled at giving relatives face to face information and explanations they needed and the time to make decisions. Relatives valued their relationships with the staff team and told us that they often went ‘the extra mile’ for them, when providing care and support.

The service took account of people’s cultural, religious and linguistic needs. The service valued practice that acknowledged diversity and promoted equality. Clear and comprehensive information about the service and its facilities was provided to people, relatives and visitors through a wide range of methods.

Family support was recognised by staff as vital to people’s wellbeing and staff strived to meet the emotional and practical needs of people and their families. The service provided emotional support for children’s families including their siblings, that was continual and beyond the provision of care for children and young people.

All the relatives and healthcare professionals we spoke with told us how they positively appreciated the service that was provided and the manner in which it was delivered. All their comments were overwhelmingly positive in regard to staff in the IPU, the community team and family support team. Children and young people were referred and signposted to appropriate services without delay in order to respond quickly to their needs.

Children, young people and their families were at the heart of the service and were fully involved in the planning and review of care, treatment and support. Individual needs were met and responded to in a way that may exceed people’s expectations. Staff anticipated how children, young people and their relatives felt when planning care and support so people felt valued and understood. Staff delivered support to people according to their unique support plan and responded to their specific needs.

Staff understood how to respond to children and their siblings’ artistic and emotional needs at times that mattered. Innovative activities were provided to stimulate people’s interests and creativity. The lead art therapist had won an award in March 2016, which recognised and paid tribute to those who go above and beyond to deliver the best quality care on a daily basis.

Families and young people took part in discussions with staff to express their views, preferences and wishes in regard to their child’s care, support and treatment, and were invited to take part in ‘advance care plans’. Their views, wishes and plans were respected.

People were actively encouraged to give their views and raise concerns or complaints. Complaints were addressed promptly and followed up with an action plan in order to drive improvement and lessons were learned as a result.

There was an open and positive culture which focussed on children and how to enhance the quality of their life. The service actively sought feedback from children, siblings, parents, grandparents, and healthcare professionals. The feedback obtained was extremely positive. A comment included, “You have been a life line, a shining light in the darkness.”

The service took a key role in the community and was actively involved in building further links. It had the support of approximately 1200 volunteers.

People’s feedback about the way the service was led described it as, “extremely caring” and, “well organised.” The service and the registered manager worked in partnership with other organisations to raise standards of care.

There was a robust system in place to maintain and monitor the quality of the service across all departments that was effective in driving continuous improvement. Comprehensive audits were carried out about every aspect of the service to identify how it could improve. When needs for improvement were identified, remedial action was taken to improve the quality of the service and care.

Care records showed that the children and young people were supported with their care in a way that was individual and in accordance with their wishes. The care records reflected the health and personal care that children and young people needed, and was appropriately checked and agreed with their next of kin and/or other professionals.

Children, young people and/or their representatives who used the service were protected from the risk of abuse, because the provider had taken reasonable steps to identify the possibility of abuse and prevent abuse from happening.

The staff were given appropriate training and support, and had opportunities to develop their own professional portfolios. We saw that they had regular training in relevant subjects, and could discuss the training outcomes together.

We saw that there were monitoring processes in place that ensured that children and young people were protected against the risks of inappropriate or unsafe care and treatment as the service regularly assessed and monitored the quality of the service provided.

Comments from completed surveys undertaken this year included, 'We cannot express how much we relax with X being looked after by the Care Team. They are all so professional yet fun, relaxed and welcoming'; 'We were made very welcome on our first visit and have been made welcome since. Very friendly and professional staff, all of whom work very hard to make everything much less stressful for us and other children and families'; 'We really appreciate the respite and other support from Demelza House. All the staff have been extremely kind and helpful'; and 'X has always been treated with respect and certainly excellently looked after, as are we'.

Comments from people who used the service included 'The staff always ask and explain what they are doing for my child', 'The staff are good', and 'They are kind and caring people'.