Demelza, Hospice Care for Children – Kent, is a local registered charity that provides specialist palliative care to children and young people aged 0-19 with advanced progressive life-limiting illnesses, both within the hospice and in the comfort of their homes. It aims to meet children and young people’s physical, emotional, social and spiritual needs. Its catchment area is Kent & Medway, East Sussex and specific boroughs in South London.

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 principle

We found that the service obtained suitably detailed information about children and young people’s needs to enable staff to provide effective 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”.

Staff communicated with people according to their individual needs and respected their privacy and dignity. Parents said that they had been involved in discussions about the help their child needed. We were told that there were different activities to do and that the children and parents could join in with activities if they wanted to. People said they were happy with the support they received, and that the staff looked after them well. They said they knew who to speak to if they should they have any concerns, but said they had no complaints.

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”.

People said they enjoyed coming to and staying at Demelza House. Parents said they had been visited before the admission of their children took place. They said that they had been involved in discussions about the help their child needed. People said there were different activities to do and that they could join in with activities if they wanted to. They said they were happy with the support they received, that the staff looked after them well. People said they liked the food, there was a choice of menu and that they chose where to eat. People said they knew who to speak to should they have any concerns, but said they had no complaints.