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Inspection carried out on 20 and 26 January 2015

During a routine inspection

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.

Inspection carried out on 13, 14 November 2013

During a themed inspection looking at Children's Services

We inspected the Jessie May Trust agency over two days. During our visit we met with parents and children at a family group which was held quarterly at the agency office. Parents had absolute praise for the staff and the way in which the service was delivered. One parent told us "I couldn't do without them�.

The agency offered nursing care from qualified nurses who were employed by the University Hospital Bristol. In addition the service offers respite care, end of life care, bereavement support and practical and emotional support to parents with a child with a life-limiting condition. Services are delivered in the family home.

We found that children's needs were assessed and reviewed in order that they received appropriate and timely support. Staff were highly motivated, caring and skilled professionals. The agency provided appropriate training, supervision and appraisals for the staff.

The agency provided social activities and many other opportunities for parents to get together. We looked at the quality assurance system which evidenced that the agency consulted with children, families/carers and other stakeholders in the evaluation of the service.

Inspection carried out on 10, 11 January 2013

During a routine inspection

During our visit to the homes of the children being cared for we observed interactions between the children and the nurses to help us understand their experiences. We saw that the children were being well supported with their nursing and care needs. It also helped us to see that the children (and their parents) were being respected and that strong relationships built on trust and professionalism had been established.

We spoke with ten staff during our inspection. All staff were very motivated, committed and positive about working for The Jessie May Trust. Staff praised the training,teamwork and supportive atmosphere.

Complaints were not commonplace but a complaint that had been made was been handled and responded to effectively. Parents knew how to make a complaint if they had any concerns.

Comments made by parents included �The staff are exceptional, when the service came into our lives we felt as if a great weight had been lifted from our shoulders, the service provided is amazing�.

The staff we spoke with were extremely knowledgeable about the nursing and support needs of the children in their care. Staff were friendly and professional. We saw that appropriate recruitment checks had been undertaken before staff began working for The Jessie May Trust.

Records about support provided to the children had been extremely well written, involved the required people, had been kept under review and updated where required.

During a check to make sure that the improvements required had been made

In order to check if improvements had been made we spoke to the nominated individual, who is also the registered manager. They told us about the steps that had been taken. Actions taken by the provider included a review of the procedure for the use of control or restraint. The nominated individual also told us that staff had attended restraint training, that this had been undertaken to ensure staff were given the support and knowledge needed in this area. As well as regular case reviews, support for staff included hypothetical discussion during supervision sessions to check staff understanding.

Inspection carried out on 2 March 2012

During a routine inspection

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.