Rainbows Hospice for Children and Young People

Rainbows Hospice provides care for children and young people up to the age of 30, with life threatening or life limiting conditions. Services include specialist respite, palliative, end of life and bereavement care. The service provides support to families of children and young people both within the hospice and the wider community. The hospice supports families across the East Midlands.

Rainbows provides a residential respite facility for up to 14 children and young people at any one time, within designated areas of the hospice, within individual bedrooms. At the time of our inspection there were nine children and young people accessing respite care. The hospice is located on the edge of a housing estate on the outskirts of Loughborough. The facilities provided by the hospice include, a multi-sensory room, computer room, soft play room, hydrotherapy pool, music therapy room, separate lounges for children and young people, an art and crafts room and day care facility. Accommodation is also provided for parents and their families should they wish to stay. The grounds of the hospice incorporated a range of facilities for children to play, and distinctive areas of landscaped gardens for relaxation and a separate remembrance garden.

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.

The provider had employed staff to undertake specific roles, which had a positive impact on the experience of children, young people and their families. For children and young people it presented opportunities for them to take part in activities and experience everyday activities, including play, Whilst for the families of children and young people, the provider recognised the impact of a child’s health on the wider family and had created staff roles who led support groups for siblings and parents, the groups provided support through information, counselling and social events, and were well received by those who participated.

The inclusive approach of the provider, in response to feedback from parents had established the ‘transitions project’ and group, facilitated by a member of staff who had considered as part of its work the impact of the Mental Capacity Act 2005, (MCA) and its implications for young people who used the service as they transitioned to adulthood. The transition co-ordinator worked with young people and their parents, providing support as they transferred to adult services.

The provider worked in partnership with children, young people and their families by providing opportunities for everyone to comment and influence the care and treatment provided. This enabled staff to deliver person centred care, with staff supporting children and young people throughout the day, providing all aspects of their care and treatment along with play and the taking part in recreational activities. Parents valued their relationships with staff who felt that the support they received had a positive impact on their life and that of their child’s. Staff focused on the wellbeing of children and young people, and their families and worked together to share information for the benefit of the child or young person.

There were excellent recreational facilities, for which children and young people could access, and a range of holistic therapists were available to them and their parents. There was a commitment shown by all staff with regards to the quality of life of children and young people, with staff providing support so that they could take part in activities and play. Children and young people were observed playing, with other children, which included face painting, planting seeds, soft play and interactive games and relaxation in the multi-sensory room.

The provider and staff’s commitment to the delivery of high quality care has been recognised by organisations external to Rainbows Hospice. Staff in a range of roles from the hospice have worked and continue to work with a range of organisations, which include NICE, Together for Short Lives and East Midlands Children/Young People’s Palliative Care Network. Using their experience and knowledge to develop good practice, this has included their contribution as authors in publications. The Medical Director is the author of the Paediatric Symptom Control Manual, widely used within the field of palliative care.

We found the provider and staff promoted the safety of children and young people and their parents told us they were confident of their safety whilst at Rainbows. Any safeguarding issues were clearly identified in children’s and young people’s care plans. 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 and their wishes and expectations of care.

Young people who used the service and a parent we spoke with said medicine was managed safely and staff provided support where needed. We found nurses gave children and young people their medicine when they needed it and not at set administration times. This was a child centred approach. Medicine was stored safely within the service and staff responsible for the administration of medicine had their competency regularly assessed.

We found improvements were needed in some aspects of medicine management; however a majority of the improvements required would not directly impact on children and young people’s safety, but would make the system of medicine management more robust. We spoke with the registered manager who told us they would make the necessary improvements. We received an action plan following the inspection detailing how the provider would implement changes, of which some action had already been implemented.

There were sufficient highly qualified and experienced staff, from a range of disciplines to meet the needs of the children and young people who used the service, reflective of their health, therapy and activity needs. Staff received regular training in areas relevant to their practice. Safe recruitment practices were followed when recruiting new staff.

People we spoke with were positive about the meals and the quality of the food and told us that choices were always available, which included special requests. Mealtimes were family oriented with hospice staff, children and their families eating together. Any special dietary requirements were noted in the care plan, which included where children and young people were artificially fed.

A child or young person approaching the end of life, and their family, could stay at Rainbows hospice. Anticipatory symptom management plans and medicines were in place in order to respond rapidly to escalating symptoms at the end of life to keep the child or young person as comfortable and as pain free as possible.

Children and young people who died at Rainbows hospice and some who died elsewhere could access the ‘The Quiet Room’. The provider had taken measures to ensure people’s spiritual, religious and cultural needs were recognised and supported. The facility could be personalised for each child or young person by their family. Following the death of a child or young person bereavement support was provided to the family, for as long as they wished.

Bereaved families were invited to an annual remembrance day where all children and young people were remembered. Upon the death of a child or young person, the provider had a plaque engraved with the child’s name, which with the parents’ consent, was placed in the remembrance garden or taken by them to a place of their choosing.

Parents told us they accessed a range of services provided by Rainbows hospice, which responded to their individual circumstances, offering support and information and in some assistances additional respite care. Parents and health and social care staff could refer a child or young person to the service. Regular admission panels ensured that all referrals were dealt with in a timely manner.

A complaints policy and procedure was in place. Where parents had raised a concern we found their concerns had been robustly investigated with the parent being kept informed at all stages of the investigation. Parents attended meetings to discuss their concerns. Parents told us that the outcome of investigations had been shared with them in writing, which included details as to how any changes to practices were going to be made as a result of the investigation and included an apology.

The Board of Trustees has a parent representative and includes people with a clinical and non-clinical background. The service works in partnership with other organisations to share and promote good practice, on a local, national and international level, which has included visits from health care professional from a range of countries.

The service was managed well led. The staff team learnt from any mistakes and were constantly striving for excellence. An effective system was in place to monitor and audit the quality of the service being provided. There was a homely, friendly and open culture in the hospice.

We asked if they felt the service respected and involved their relative in their care, they told us that staff were friendly and helpful and included their relative in planning their care. We looked at people's support plans and these showed how they involved people in the creation and up date of plans.

We looked at people's nutrition and we saw that the service had records showing what people needed to maintain their nutrition. A visitor spoken with said that the chef had spoken with them to check what sort of things their relative liked to eat.

We asked if their medication was handled safely, the visitor we spoke with said they were confident in how their relative's medication was handled. We saw that the service had a robust system in place for monitoring medications ensuring people received their medication safely.

We were told that staff were competent in their role and we saw training that confirmed they received regular training and support.

We were told that the complaints were handled well by the service, we saw records that indicated how the service dealt with any complaints it received.

We did observe care taking place in communal areas and saw that staff were kind and caring with people. They provided care according to care plans and were able to explain why they provided care in a particular way.

We saw that systems were in place and followed to ensure that people were safe and protected from abuse and that there were effective systems in place to ensure suitably qualified and experienced people were recruited to work in the service.

There are robust systems in place to ensure that the quality of the service is monitored and reviewed to ensure that people using the service can be confident they are receiving the best possible care.