Demelza, Hospice Care for Children - SE London

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• 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

We assessed 1 quality statement in the responsive key question and found areas of good and outstanding practice. The scores for these areas have been combined with scores based on the rating from the last inspection, which was outstanding. The assessment of these areas showed outstanding practice since the last inspection, and our rating for responsive remains Outstanding. Staff included health, social, and spiritual requirements in ongoing assessments, which allowed for recognising and planning changes in their conditions and preferences. Families believed various therapies, such as play, art, and music, benefitted their children. The therapies facilitated communication, and the children enjoyed the sessions, which helped their sense of wellbeing. The programme encouraged family-centred care, and the team designed plans with his goal in mind. Staff had created sibling support groups to help them get assistance from others in a similar situation. Demelza SEL worked in partnership with neonatal intensive care units to support families whose unborn babies had life-limiting conditions. People were aware of the complaint's procedure and felt confident about using it.

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

We did not look at Person-centred Care during this assessment. The score for this quality statement is based on the previous rating for Responsive.

The service had suitable facilities to meet the needs of service users. This included bereavement suites, family accommodation, a lounge, a music and sensory room, an art room, a quiet room for families, a kitchenette/living area, a training room, a laundry room and an outdoor play area. The building had several artworks chosen to appeal to a range of children, including those with sensory needs. There was a number of play spaces, including a garden with equipment, including a swing, roundabout and climbing frame. Indoor activities included an art room, a music room, and a sensory room, which offered children a safe and colourful environment to play for therapy and relaxation. The therapeutic space has a variety of equipment to stimulate and develop a person's senses through special lighting, music, and objects. Families had access to stay for up to seven days for respite care. Respite care consisted of one long break for seven days or short breaks for two to four nights. Deceased children could stay in the bereavement suite for up to five days post-death. Families were positive about their experience of using the facilities offered by the service. We spoke to parents who attended the bereavement café that staff had set up for 10 am on the date of our visit. All parents were overwhelmingly positive about the support provided to them following the loss of their child. One parent said, "Being in the room, having a coffee morning with mums in similar circumstances is extremely valuable." Some of the parents had used the service for respite before the loss of their child, and one had a referral following the loss of their child.

The service went the extra mile to support bereaved families. One parent said they opened the centre for them during Christmas, and the whole family stayed when their child was at the end of life. They said staff supported them emotionally and checked on them periodically. The service referred families to partner organisations for support where necessary. The service arranged transport for family members to attend the centre. Joint working arrangements between the service and hospitals facilitated support for neonates (babies less than one-month-old) who had a short life expectancy and their families. Where this had been identified before the child's birth, the service worked with parents and health care professionals from the neonatal intensive care unit. They were part of the team supporting families in making informed decisions about their child's end-of-life care. During our inspection, the service provided a supportive environment for a parent and neonate child. The service put up a butterfly projection on the ceiling in the main reception area to make staff aware that a child had passed away. Families were involved in care plans for children, which took cognisance of individual dietary needs and cultural requirements. The service had several provisions for bereaved families, including the book of remembrance (with each child's details), memory boxes, and remembrance packs for parents and siblings. The service organised events for bereaved families three times a year, and this was open to every family on the caseload. Families engaged in memory-making activities, including creating keepsakes for the family. Families could provide feedback using feedback cards, forms, voting counters and online polls. Families could also provide feedback on social media pages, one for families on the caseload and another for bereaved families. Feedback from staff and leaders Staff understood the diverse health and care needs of the families they cared for.

There were different pathways, programs and provisions to address the particular needs of individual children, young people and their families. The service worked with partner organisations to meet people's needs. For example, the service received hospital referrals to admit children with life-limiting conditions. The service liaised effectively with community teams, including health visitors, midwives, social workers and local GPs. On this inspection we did not look at feedback from partners.

The service had clear admission criteria for life-limiting or life-threatening conditions. Staff carried out assessments of patients' conditions and vulnerability. The service had a referral panel, which met monthly to review the referral forms sent in from healthcare providers and parents. Children who did not meet the admission requirements were signposted to another suitable service. The service had clear systems for prioritising care. Staff informed us they prioritised end-of-life care over respite care. The service made provisions to accommodate children, young people, and their families for end-of-life care. The service had robust arrangements for supporting bereaved families, including providing bereavement cafes (including online cafes), creative writing groups, newsletters, and grandparents' monthly groups. The service had a bereavement steering group, including bereaved family members.

We did not look at Providing Information during this assessment. The score for this quality statement is based on the previous rating for Responsive.

We did not look at Listening to and involving people during this assessment. The score for this quality statement is based on the previous rating for Responsive.

We did not look at Equity in access during this assessment. The score for this quality statement is based on the previous rating for Responsive.

We did not look at Equity in experiences and outcomes during this assessment. The score for this quality statement is based on the previous rating for Responsive.

We did not look at Planning for the future during this assessment. The score for this quality statement is based on the previous rating for Responsive.