The inspection took place on 9 July 2015 and was unannounced. Claire House Children's Hospice provides care for babies, children, and young people up to the age of 23, with life-threatening or life-limiting conditions. Services include specialist respite, palliative, end of life and bereavement care. The hospice supports families from across Merseyside, Cheshire, North Wales, West Lancashire and the Isle of Man. It is mainly funded by charitable donations.

The hospice describes its purpose as ‘To reach out to every child with a life-limiting or life-threatening condition and their families, making sure they can get the very best support when and where they need it.’ At the time we visited, 191 families were receiving support from the hospice, either by the in-house care team or the ‘Hospice to Home’ team, a specialist group of nurses who take the care of the hospice out into the community and into the family home. The service also supported 179 bereaved families.The service had a ‘Mums and Tots’ group that met fortnightly.

The service had a registered manager. 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.

We found that every effort was made to ensure that children and young people were kept safe when receiving services from Claire House. Safeguarding policies and procedures were in place and the staff we spoke with had received training and were aware of their responsibilities. Any safeguarding issues were clearly identified in children’s care plans. Robust risk assessments were in place for all clinical areas, equipment, activities, and outings, with risk assessors and reviewers in every department. Each child and young person had a personalised care plan which assessed and balanced the risks associated with activities against the individual’s quality of life.

Security of the building had been enhanced as part of a recent refurbishment. Records showed that arrangements were in place to ensure that premises and equipment were well-maintained. Infection prevention and control policies and procedures were in place and staff received training on induction and annually.

There were enough highly qualified and experienced staff to meet the needs of the children and young people who used the service. Staff received regular training in areas relevant to their practice. Safe recruitment practices were followed when recruiting new staff and new staff had a structured programme of induction training.

People told us that mealtimes, the quality of food, and the choice offered were exceptional. Their individual needs were met and staff went out of their way to meet their preferences. Mealtimes were family orientated with hospice staff, children and young people and their families all eating together if they chose. Any special dietary requirements were noted in the care plan and the kitchen plan so that staff could cater accordingly. A nutritional assessment was undertaken on each admission and reviewed according to the length of stay and the child’s care needs. The hospice team liaised closely with specialist hospital and community dieticians for specific children’s nutritional requirements.

In the records we looked at there were up to date consent to care and treatment forms and consent for activities. During our visit we observed that staff sought consent for all care interventions. The care plans we looked at included personal care preferences, specialised care needs, and any cultural or spiritual needs and choices. Care plans and risk assessments were reviewed on every visit, and daily for those approaching the end of life. Each child had a full annual review of their care needs.

The service employed four play specialists who developed and planned individual and group activities both inside and outside Claire House. There were excellent recreational facilities. A range of holistic therapies were available for children and young people and for family members.

Each child was allocated to a specific team of staff who built up a relationship with the child and their family and identified their specific needs, likes, and dislikes, and acknowledged birthdays and anniversaries. The team made regular contact with the family and the other services involved in their care in between planned stays. All of the care interactions we observed were caring, respectful and age appropriate and met the needs of the individual, for example use of communication boards and Makaton signs. There were multiple communal recreational areas that catered for different age groups and abilities.

End of life care could be provided at the child’s home by the hospice to home team or at Claire House. A child or young person approaching the end of life, and their family, could stay at Claire House for as long as needed. Anticipatory symptom management plans and prescribing were in place in order to respond to rapidly escalating symptoms at the end of life and keep the child or young person as comfortable and pain-free as possible.

Children and young people who died at Claire House, and some who died suddenly elsewhere, could use a ‘Butterfly Suite’ at Claire House. These were special bedrooms that operated on a cooling system allowing the child or young person to lie at rest often until the time of their funeral. The Butterfly Suite could be personalised for each child by their family, the care team or both. Families and others with consent could spend as much time as they wished with the child and the child could go directly to their funeral from Claire House. During this time the family were offered one to one support by an appropriately skilled member of the care team. Following the death of a child or young person, the family support team continued to support the family for as long as needed, or for as long as they wished.

At every stage, parents could self-refer and a service could be provided. A fortnightly multi-disciplinary referral panel ensured a prompt response to all referrals. The referral process also included rapid response to referrals for end of life care at home or hospice. The hospice to home service provided end of life care, symptom assessment and management, emotional and psychological support, bereavement support, and specialist respite care for crisis management, which may be a family crisis rather than one connected with the child’s health. There was a weekly meeting each Monday morning involving the hospice team, the hospice to home service, physiotherapy and family support, to discuss care scheduled and identify children requiring additional support.

A complaints policy and procedure was in place and this was included in the information pack for families. The records we looked at showed how complaints were dealt with, whether the complainant was satisfied, any other agency that had been involved, and any action taken.

Service development took account of feedback from children, young people and their families, and from staff, commissioners and healthcare professionals. We saw evidence of regular clinical audits, for example of care plans, infection prevention and control, medicines management and the care environment. These resulted in action plans for improvement where appropriate.

The registered manager had relevant and up to date experience and expertise to lead the service. During our visit we found that the seniors and managers were visible within the day to day service.

The Board of Trustees had a parent representative and there were two consultant paediatrician trustees. The service worked in partnership with other organisations to make sure they were following current practice and provided a high-quality service. They strove for excellence through consultation, research and reflective practice.

Following our visit to the service, the specialist professional advisor commented “People receive outstanding care from exceptional staff who are compassionate, understanding, enabling and who have distinctive skills in this aspect of care. Staff also care for and support the people that matter to the person who is dying with empathy and understanding.”

At the time of this visit Claire House was undergoing major refurbishment work, which meant that only three of the ten beds were available. These were being used for emergency respite and end of life care only. The refurbishment work included upgrading six bedrooms, the milk kitchen, a new teenage den, reception area and counselling/holistic therapies suite and some communal areas. The work is scheduled to be completed on the bedrooms by April 2014 and the reception and counselling suite to be completed by the end of May 2014. At the time of this inspection no patients were present at the service.

We spoke on the phone with five parents of people who used the service and a number of other professionals who the service regularly worked with. We also spoke with three staff members during the inspection. People we spoke with confirmed they were satisfied with the service.

We looked at five support plans and other care records for people who used the service and they all had an assessment of their health and social needs completed. The documentation was up to date and reviewed on a regular basis. People confirmed they were involved in the development of their support plans and that these were reviewed with them at each visit.

We looked at the nutrition that was available to people who visited Claire House and found that this was tailored to each person’s individual need. There was a milk room and another kitchen available for the preparation of meals. Meals were also provided for the parents and siblings of people who used the service during their visit.

Parents of people who visited Claire House said: “It’s a fantastic place”, “My daughter loves it there”, “The staff are excellent” and “The aftercare has been superb.”

Staff commented: “The training is very good here”, “We have regular meetings”, “We have good links with parents and community professionals” and “My job satisfaction is amazing.” All the staff said they got good support from the management team and that they had no concerns about the welfare of the people they supported.

We looked at staff recruitment and saw that appropriate processes were in place and that people who used Claire House were protected by robust recruitment processes and practices.

We spoke to two patients and two parents when we visited. They all told us how satisfied they were with the service and could not fault them. They told us:

“We are always treated respectfully, they listen to our views and act on them”,

“The care is second to none”

“It is wonderful, an invaluable service”

“It is a high quality service; they are always welcoming, warm and friendly”.

We found that the hospice had systems in place to gain and review consent from people who used the service and those responsible for them. We found that people were fully informed and involved in their care and choices and preferences were acted upon. Complaints and comments were dealt with appropriately and improvements made where necessary.

Patient's care was assessed, planned and implemented effectively and safely. Care and treatment plans were individualised and took into account people’s wishes. End of life care was planned and delivered with respect and support involving the family as a whole. There were suitable numbers of experienced and qualified staff to look after the patient’s and their varying needs.

The premises were purpose built and conducive with the needs of the patients, families and friends. Maintenance was planned and carried out according to requirements. We found that risk assessments were in place however some of these needed reviewing.

We visited the hospice and spoke to parents of children who were patients. They all told us they were extremely satisfied with the service given at the hospice. They said they were extremely satisfied with the way they were able to be involved in the care and choices for their child. We were told “You can change the care plan at any time as needed” “Your views and feelings are totally respected”.

Those we spoke to praised the staff and care given at the hospice saying “ They are lovely, they can’t do enough for you”, “They are one in a million and worth their weight in gold” , "Its fantastic- like home from home”. We were told the hospice had helped them greatly as families over the years their children had been patients. We were told they care for the whole family including siblings, parents, family members and friends. They told us the care was very individualised and carried out on a one to one basis. People whom we spoke to told us staff were “Lovely” and “Worth their weight in gold”. They also told us they felt very safe with the experience and skills of the staff.