Derian House Children's Hospice

On this page

• Overview
• Person-centred Care
• Care provision, Integration and continuity
• Providing Information
• Listening to and involving people
• Equity in access
• Equity in experiences and outcomes
• Planning for the future

Responsive – this means we looked for evidence that the provider met people’s needs.

At our last assessment we rated this key question outstanding. At this assessment the rating has changed to good.

Good: This meant people’s needs were met through good organisation and delivery.

Children and their families were at the centre of how care was planned and delivered. The health and care needs of children, their families and communities were understood. There was partnership working to make sure that care and treatment met the needs of the children.

This service scored 79 (out of 100) for this area. Find out what we look at when we assess this area and How we calculate these scores.

We scored the service as 4. The evidence showed an exceptional standard. The service was exceptional at making sure people were at the centre of their care and treatment choices and they decided, in partnership with people, how to respond to any relevant changes in people’s needs.

Staff enabled children and young people living with learning disabilities and long-term conditions to receive the necessary care and support for all their needs. Staff supported children living with complex health care needs by using ‘All about me' documents to record children’s likes, dislikes, routine, and their communication style. We reviewed 3 patient records and found these were completed consistently. The service had information leaflets and signage available in languages spoken by the children, young people, their families, and local community. Managers made sure staff, children, young people, and their families could get help from interpreters or signers when needed. Staff had access to communication aids to help children, young people and their families to become partners in their care and treatment such as Makaton.

The hospice was designed to meet the needs of children, young people, and their families. For the children the service had a light sensory room, a soft play area, hydrotherapy pool and a disability friendly outdoor play area with wheelchair accessible swings. The service had a Sunflower suite which was a cool room for children to rest after death. This room had suitable decorations in, and families were encouraged to bring special items in to personalise the suite for their child. There was a family room next to the Sunflower suite, where families could go for privacy which had kitchen facilities, toys, and comfortable furnishings. The manager told us they wanted to make sure these spaces felt like a home and not a clinical area.

The service also had accommodation in the building for families to stay if their child was on end-of-life care or was resting in the Sunflower suite. Children, young people, and their families were given a choice of food and drink and items and facilities to meet their cultural and religious preferences. Families were informed of the religious artefacts and prayer books so they could be provided with what was meaningful to them.

We scored the service as 3. The provider understood the diverse health and care needs of people and their local communities, so care was joined-up, flexible and supported choice and continuity.

When more than one service was involved in the child or young person’s care the service worked in a collaborative and flexible way to ensure the care was joined up. Staff worked as a multidisciplinary team that included parents and carers and other specialty teams, such as the Community Children’s Nursing Teams.  

Staff made sure children, young people and their families understood their care and treatment. We observed staff communicating appropriately with children and their families and records we reviewed showed children had their communication needs assessed on referral to the hospice and documented in their records for staff to follow. The service had a variety of leaflets to support families to understand different conditions and treatments. Children’s families told us that they had been involved in planning and organising their children’s care. Children, young people, and their families could give feedback on the service and their treatment and staff supported them to do this.

Feedback was continually positive about the service and about the way staff treated people. Children’s families said that their care and support was “excellent, friendly and supportive”.

The service organised events and trips for families and siblings of patients, such as summer and winter parties, meals, and theme park trips. Siblings had their own activities and events they could attend, so that they could have time where the focus was on them, and they could make friends with other patient’s siblings to have peer support. Parents we spoke with told us how beneficial these family and sibling days were in engaging the whole family.

The service held bereavement days for families to come together to celebrate their loved ones and get support from the community and the staff. This provided families with continued emotional support after the death of their child and a chance to offer each other mutual support. The reflection garden had a memorial feature of the names of children engraved within the stones around the water feature and on the paths. The garden was open to visitors on days of their choosing.  

We scored the service as 3. The provider supplied appropriate, accurate and up-to-date information in formats that were tailored to individual needs.

The service had developed appropriate, accurate and up-to-date information for parents and families. The service provided leaflets and noticeboards which gave information about services available to families.  

The Derian House Children's Hospice website had information about services and support available. The website had accessible formats available which included a ‘read aloud’ function and the option to translate into different languages.  

We scored the service as 3. The provider made it easy for people to share feedback and ideas, or raise complaints about their care, treatment and support. Staff involved people in decisions about their care and told them what had changed as a result.

The service had posters in the building and a section of their website for giving feedback or making a complaint. The family engagement team contacted families after using the service for feedback about their last visit in order to learn and improve the service for future visits. Feedback was used to improve the service and staff worked with families to co-design areas of the hospice, such as the play park.

Young people who used the lodge within the hospice were encouraged to feed back their ideas for change and improvement via the young person’s forum group. The forum met 4 times a year and actioned ideas, such as adjustments to the kitchen, designed a graffiti wall in the patio area and created a young persons section on the provider website.

The service had a complaints process and had not received any complaints in the last 12 months.

We scored the service as 3. The provider made sure that people could access the care, support and treatment they needed when they needed it.

The aim of the service was to provide respite care for children with life limiting conditions. Respite care provided caregivers with a break from caring for their loved ones and stays of up to 10 days a year could be arranged. Care stays were planned in advance which meant families and carers could not access care at short notice. However, leaders told us they would always try and meet the needs of children and young people known to the service at short notice and if they were not able to offer an inpatient stay the child or young person could be supported in the community. End-of-life care could be accessed 7 days a week.

Staff were alert to discrimination and inequality that could disadvantage different groups of people in accessing the service. The service and staff worked together to remove barriers to care and accessible environmental risk assessments had been undertaken to promote accessibility.

We scored the service as 3. Staff and leaders actively listened to information about people who are most likely to experience inequality in experience or outcomes and tailored their care, support and treatment in response to this.

The service had a referral policy containing inclusion and exclusion criteria in line with up-to-date guidance and an eligibility assessment tool to assess whether Derian House Hospice was the most appropriate environment to meet the child’s individual needs. The service cared for children and young people under the age of 26. The service created tailored admission plans for families and children’s needs such as day visits for children prior to overnight stays and giving parents the option to stay in the parent’s suite at the beginning of their child’s overnight stays to alleviate anxiety and allow children and families to settle into the hospice.

Staff supported children, young people, and their families when they were referred or transferred between services. The service had systems in place for planning for transition to young people’s services. Managers monitored patient transfers to hospital and investigated these to ensure best practice and identify potential learning. The service had an urgent access pathway in place so that people can be transferred to die in their preferred place if this was required.

3. People were supported to plan for important life changes, so they could have enough time to make informed decisions about their future, including at the end of their life.

People who use the service were supported to make plans for their future. We saw care records were personalised and took account of the patient’s needs, wishes and feelings.

The service has built strong relationships with adult services to support the transition of care in a way that ensures the young person’s complex health care needs and their wishes are met.

All staff involved in the care of children and young people receive training and development in compassionate communication and advanced care planning.