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.”