Capturing children and young people’s experiences to help improve care

In this new blog, Julie Stanborough, Director of Data and Insight, explores the results of the recently published Children and young people’s survey, focusing on the value of this new data and its insights about acute care for children and young people.

Last month, we published the results of the 2024 Children and Young People’s Patient Experience Survey. This survey provides new insights about acute hospital care for children and young people, based on the experiences of nearly 26,000 children and young people who were discharged from hospital in March, April and May 2024.

We first ran the Children and young people’s survey in 2014. Over the past decade, this has provided insights about how tens of thousands of children and young people experience hospital care. This England-wide survey is unique because it gives children and young people themselves the opportunity to tell us what they thought of their care.

A lot has changed since the last iteration of the survey, which ran in 2020, including a full redevelopment of survey content and methodology. This year, for the first time, participants could respond either online or by post.

As well as addressing a need for up-to-date statistics, the findings add to the bigger picture around care for children and young people. While broadly positive, they support concerns raised in our 2023/24 State of Care report that many children and young people are not getting the support they need when they need it.

The new data was gathered through 3 questionnaires. These were redesigned based on feedback from children and young people, their parents and carers, and a range of professionals, who helped inform what we should be asking and how we should be asking it.

The questionnaires were completed by:

• parents of children aged 0 to 7 years
• children aged 8 to 11 years and their parents or carers
• young people aged 12 to 15 years and their parents or carers.

Overall, children, young people and their parents were positive about the care they received. When asked how well they (children and young people aged 8 to 15) or their child (parents and carers of those aged 0 to 7) were looked after in hospital, 71% of parents and carers and 73% of children and young people said ‘very well’. A further 25% of parents and carers and 23% of children and young people said ‘quite well’.

The survey also revealed that most children and young people, and their parents and carers, felt involved in decisions about care and treatment, staff provided information to most parents and carers in a way they could understand, and most children and young people were given enough privacy.

But there were also areas for improvement. More than half (59%) of parents and carers raised a concern about their child’s care and treatment. But only 6 in 10 (62%) of those who raised a concern felt staff had ‘definitely’ taken those concerns seriously, while 3 in 10 (28%) felt they were taken seriously ‘to some extent’ and 1 in 10 (10%) were not taken seriously. NHS trusts need to do more to ensure parents and carers’ voices, concerns, and observations are listened to and acted on.

The survey also found that 68% of parents and carers said staff ‘definitely’ accounted for their child’s needs, which could include things like language support or physical adaptations. The data provides detailed insight about people so we can investigate inequalities in care in areas such as this. Our analysis showed that, among others, children and young people with a mental health condition, autistic children and young people, and disabled children and young people were all significantly less likely to have their existing needs ‘definitely’ accounted for. These groups of children and young people also had worse experiences in several other areas.

These findings highlight that, not only are children and young people with a mental health condition not getting the care they need in the community for their mental health, but they are also more likely to have poorer experiences in hospital for their physical health care.

These are valuable insights about children and young people’s healthcare experiences across 120 NHS acute and specialist trusts in England. But our methodology also helps build a detailed picture at the local level. All trusts that took part are scored individually on each question across the survey. This allows us to apply a robust statistical technique to identify where trusts are performing better or worse than others. These results are accessible to the public, and we urge trusts to look at the insights this can provide to ensure they are providing the best possible care for all children and young people.

CQC uses the results from the survey in the regulation, monitoring and inspection of NHS trusts in England. Survey data is used in CQC’s monitoring tools, which provides inspectors with an assessment of how trusts are performing, with survey data providing the patients’ perspective on this. The survey data will also be used to inform our inspections and as a key source of evidence to support the judgements and ratings for trusts.