Background
Published in November 2024, this national report presents findings of the 2024 Parent and Patient Reported Experience Measure surveys (PREMs). These surveys assessed various aspects of children and young people's, and their parents’ and carers’, experiences of diabetes care within the first year of care.
The surveys were available online from 24 July 2023 to 23 January 2024. Children and young people receiving care from a paediatric diabetes team, and their parents and carers, with a diabetes duration of 6 to 18 months were invited to participate. This round of PREM surveys received a total of 2712 responses, with 726 responses from children and young people, and 1986 responses from parents and carers.
While it is important to acknowledge the high levels of satisfaction with care reflected in the findings, this report also highlights areas for improvement in care following diagnosis, offering specific recommendations to commissioners, regional diabetes networks, and paediatric diabetes units (PDUs) to address variations in patient and parent experiences.
Key messages
- 15% of respondents were unsure if they or their child had DKA at diagnosis, while 44% reported DKA at diagnosis—significantly higher than the 23.3% reported in the NPDA 2022/23 Care and Outcomes Report.
- Parents/carers and children and young people are happy with the age appropriateness of the clinic waiting area.
- 82% of parents and carers can always reach their diabetes team during core hours, and 71% have 24/7 access. Nearly all respondents received face-to-face support, with 85% of parents/carers and 60% of young people receiving phone support. Over half of parents/carers also received support via hospital, home, or school visits.
- Most parents and carers could see a diabetes doctor and specialist nurse at every visit, but access was lower for dietitians and psychologists. Access to a psychologist varied widely across regions.
- Nearly a quarter of respondents weren’t offered an insulin pump or hybrid closed loop but would like to use one. Additionally, 2.7% were not offered any glucose monitoring device, and 6.6% were not using one.
- The vast majority of parents and carers and children and young people felt that schools and colleges were kept well informed with information about diabetes.
- Almost all respondents (99%) have positive relationships with their paediatric diabetes team.
- Diabetes care impacts parents’ employment, with 30% reducing hours and 11% leaving work. Only 29% were asked by the diabetes team about financial challenges affecting their child’s care.
- 64% of parents/carers experience weekly sleep disruptions due to stress about their child’s health, with those of younger children affected more frequently.
Individual clinic level reports and posters
Reports for the 2024 First Year of Care PREM will be published soon.
The reports and posters from the 2021 PREM are still available to download
Additional data files
As part of our commitment to open data, we have made PREM quantitative data files available on our data files page.
If you have any queries please contact the NPDA team - npda@rcpch.ac.uk.