Demelza, Hospice Care for Children - Kent

Updated 1 November 2016

We carried out this inspection under Section 60 of the Health and Social Care Act 2008 as part of our regulatory functions. This inspection was carried out to check whether the provider is meeting the legal requirements and regulations associated with the Health and Social Care Act 2008, to look at the overall quality of the service, and to provide a rating for the service under the Care Act 2014. The inspection team included three inspectors and one pharmacist specialist. It was an unannounced inspection.

Before our inspection we looked at records that were sent to us by the registered manager and the local authority to inform us of significant changes and events. This included a Provider Information Return (PIR) which the registered manager had completed prior to our visit. The PIR is a form that asks the provider to give some key information about the service, what the service does well and what improvements they plan to make. This helped us identify areas to focus on during the inspection.

We looked at the premises and equipment. We looked at 12 sets of records that related to children and young people’s care in the hospice and in the community. We looked at children and young people’s assessments of needs and care plans and observed to check that their care and treatment was delivered consistently with these records. We consulted documentation that related to staff recruitment, training and management, and records relevant to the storage, ordering and administration of medicines. We observed the administration of medicines and examined three medicines charts. We looked at checks that were carried out by the provider concerning the monitoring of the safety and quality of the service. We sampled the services’ policies and procedures.

We spoke with five relatives of children who stayed in the Inpatients Unit, a young person who stayed in the hospice for respite care and four of their relatives. We also spoke with relatives of three children who received support from the community team in their own home.

We spoke with the registered manager, the Director of People and Resources, the Lead Nurse, the Community Services Manager, the Family Support Services Manager, the Head of Fundraising, the Clinical Nurse Specialist Governance, the health and safety lead, three nurses, seven care workers, two art therapists, one member of the housekeeping team and a catering assistant. We also spoke with three healthcare professionals who had experience of the service who oversaw children’s care in the community. We obtained their feedback about their experience of the service.

At our last inspection on 31 October 2013 no concerns were found.

Updated 1 November 2016

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 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.