St James's University Hospital

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 service met people’s needs. At this inspection we rated this key question as requires improvement.

Health and care needs of babies and their families were understood, and care was accessible for those with protected characteristics. However, we did not always see proactive engagement of people in driving service improvement to fully meet the needs of families and babies using the service.

This service scored 61 (out of 100) for this area. Find out what we look at when we assess this area and How we calculate these scores.

The service did not always make sure people were at the centre of their care and treatment choices and they did not always work in partnership with people, to decide how to respond to any relevant changes in people’s needs.

Child and family assessments at admission supported tailoring communication needs to individuals. This supported the provision of person-centred care.

There was an application that families could download to an electronic device which supported families in keeping up to date with their baby’s progress when they were not on the unit. This provided an opportunity for family involvement in individual care provision. There was no data available to demonstrate the uptake of this option and this was not routinely monitored.

There was a document called ‘Our Neonatal Journey’ for use with families either in paper or electronic format. We reviewed staff feedback and scoping documents and saw that this was not consistently used or promoted by staff. It was not always accessible for all families.

There were some shortfalls in how the service understood the diverse health and care needs of people and their local communities, so care was not always joined-up, flexible or supportive of choice and continuity.

There was continuity in care from early identification of concerns by the foetal medicine team through to discharge from the neonatal services. Care was provided in a joined-up way across multi-disciplinary teams. Specialist teams were involved as required. There was a neonatal outreach team that were actively involved in care provision for neonatal babies. They were integrated into the wider neonatal services and would meet babies and families at appropriate times in the journey prior to discharge home to ensure continuity of care.

We reviewed feedback and service reviews and saw that families were not consistently supported to be integrated into the provision of care for their baby. For example, we saw inconsistencies noted around encouraging and supporting families to be involved in the ‘wrapped bathing, transfer and weighing techniques’. The service recognised the inconsistencies and used a tracker document to identify required actions with review date.

The service supplied appropriate, accurate and up-to-date information in formats that were tailored to individual needs.

Information was available in a range of ways to support meeting baby and family needs. The families accessing the neonate service had equal access to the trust website information through an application that allowed for translation into 99 different languages or through, for example, text resizing.

There was an admission information pack that met required standards and BLISS baby charter silver accreditation had been achieved for this in July 2021. Information was provided for siblings in age appropriate sibling packs.

Translation services were readily available to support providing information appropriately according to individual need and preference.

Communication plans were agreed as required for individuals who needed additional support in understanding information.

The trust had made a series of podcasts available on their website for families and carers. The podcasts shared lived experience of families using the neonatal services.

The service did not always make it easy for people to share feedback and ideas, or raise complaints about their care, treatment and support. Staff did not always involve people in decisions about their care or tell them what had changed as a result.

Staff and families were invited annually to provide feedback through a regional survey. We reviewed the annual parent and staff feedback survey for 2024. We saw that only two parents and five staff members had responded to this survey. There was a risk that the service was not doing all that it could to involve people in providing feedback for service improvement and celebration of positive work.

We reviewed a family engagement scoping document for the unit and saw that there was a recognition that feedback had not always been sought proactively from diverse and harder to reach communities. This had been identified as an action to ensure that all people were able to provide feedback.

Patient experience feedback was gathered. Response rates for three months leading up to the inspection were consistent at 43%.

The service did not always make sure that people could access the care, support and treatment they needed when they needed it.

There was a well established chaplaincy team that worked closely with the neonatal units. This team worked to identify cultural differences and provided support including rites and rituals for all faiths. The team would work closely with families and had a daily presence on the neonatal units across the trust. The team would ensure that support from the most appropriate member of the team was matched to the family and to their individual needs whether this was for end of life support or ongoing pastoral support for families facing longer admissions facing complex and traumatic experiences.

We reviewed the staff and parent feedback survey for 2024. There were limited responses to this, however most staff who did respond were aware of travel costs support available for families. We heard that the family care team supported with financial issues.

Some staff felt that not all families were offered the opportunity to ‘room in’ on the neonatal unit or had enough space around cot areas for prolonged comfortable stays. We observed one bedroom to be in use on one night during our inspection. We saw there was a board for bedroom availability in a small, seated area near the entrance to the unit. However, there was no indication of dates or that this was actively used at the time of inspection. Staff also felt that sitting room facilities for families were poor. Meal provision for families was also identified as being rated poorly by staff. This meant there was a risk that families were not supported as much as possible to integrate themselves as part of the team into the care of their baby.

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.

Staff were aware of the needs of people with protected characteristics and the need for reasonable adjustments. We heard examples of care provision that had been adapted within transitional care to support a mother with additional needs. Staff worked to achieve equity and address barriers where possible.

We heard examples from the outreach team regarding meeting the needs of individual families in the community. This included meeting families prior to discharge, arranging appropriate appointment times for the family considering, for example, other siblings needs, fasting families, translation requirements.

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.

The family integrated care team became involved with families at the earliest opportunity and would support decision making and planning taking into consideration the whole families needs. For example, we heard that families would be supported to complete letters for siblings to take into school to make sure teachers were aware of family circumstances that might impact on siblings wellbeing.

Processes were in place to support future planning. Processes started in the earlier stages of pregnancy. The foetal medicine and foetal cardiology teams were active in ensuring referrals were made to a perinatal palliative MDT.

Staff supported families through times when significant decisions had to be made, for example advanced decision making and planning for babies born with life shortening conditions. This work was supported by joined up working with local children’s hospice services. Active parallel planning was in place where this had been identified as a need.

End of life care guidance was in place. This guidance was evidence based and included links to local support services.