We visited children in their own homes to observe the way the agency staff provided personal care and to speak with their parents.

We observed staff using appropriate methods to engage with the children. These methods included speaking to the child at eye level, using assistive technology to help children to play with toys and undertaking activities that the children enjoyed. The smiles and vocal noises showed us that the children enjoyed the interaction with the agency staff.

Parents told us that the staff were good and at the beginning of each visit they discussed the care already provided. We were told that following these discussions the agency staff then carried out treatment programmes, for example feeding their child, administering medication and playing with their child.

We asked parents about what actions they would take if staff told them that their child’s preference differed from theirs. We wanted to know how they would respond, when staff supported their children to make choices. Parents told us that their child’s happiness was most important and both parents said that they would respect their child's choice.

One parent told us that agency staff had supported them to devise an end of life plan. This discussion was difficult but it was complete and could be “put” away.

The Jessie May Trust is a registered charity which offers respite and support to parents and nursing and personal care to children with life limiting illnesses in their own homes. They provide respite care visits for children and young people aged 0 to 19 years of age. Qualified nurses specialising in children’s health care or nursery nurses provide the care and support due to the complexities of the children’s health care needs.

We last inspected the service in November 2013 and no concerns were found.

There was a registered manager in post. A registered manager is a person who has registered with the Care Quality Commission 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.

Parents told us they were very happy with the care and trusted the nurses to support their child safely. Comments included “it is an amazing service we receive, all the nurses are exceptional and we trust them with our child” and “I cannot fault the service, the staff are friendly and my child enjoys the visits from Jessie May Trust” and “they spend time with my child playing and interacting which is positive as usually the focus is health appointments, it is a fantastic service”.

At the time of our inspection there were 83 children registered with The Jessie May Trust. Support varied depending on the assessment of the child and the requirements of the family. Each child had been assessed and a care plan drawn up involving the child, the parents and other professionals. Parents had been involved in a self-assessment of their needs which provided a score on the frequency of visits and support. Parents confirmed this was kept under review as the needs of their child changed. Care plans included both short and long term goals and wishes on the event of an admission to hospital and end of life care. Parents described to us how this was done sensitively taking into consideration the needs of the child and their wishes.

Clear records were kept of the visits and support delivered to each child. Parents and the nurses shared important information about how to keep the child safe and what was required on each visit. This included any medicines that may be required. The staff had received training in the safe administration of medicines. This included training on oxygen therapy.

Staff understood the needs of the children and young people they supported. They had received appropriate training to enable them to support the children in their care. Staff were aware of the importance of safeguarding children and their role in sharing information with other professionals. Suitable arrangements were in place to ensure only suitable staff were employed to work for The Jessie May Trust. The nurses were employed through the United Bristol Hospital Trust which provided additional support to the nurses in respect of clinical training and support.

There were systems to regularly review and monitor the quality of care. Feedback was gained from children, young people and their families at regular intervals to drive improvements. Parents were invited to attend regular meetings about the running of the service with some being a parent representative on the board.

Staff from the Jessie May Trust work with other professionals and participate in local networking groups to ensure they were working in partnership and following current good practice guidelines.