Published in September 2022, this national report presents findings of the 2021 Parent and Patient Reported Experience Measure surveys (PREMs). These surveys were developed by the Picker Institute in collaboration with the NPDA, to measure aspects of children and young people's and their parents and carers’ experiences of diabetes care over the previous six months.
The surveys were available online between 2 August 2021 and 2 January 2022. All children and young people receiving care from a paediatric diabetes team, and their parents and carers, were invited to participate. Over 4000 responses were received from children and young people, and just over 6700 responses were received from parents and carers.
Whilst it is important to acknowledge the high levels of satisfaction with care evidenced in the findings, the report also aims to highlight areas for improvement in care, and makes specific recommendations to commissioners of health services, regional diabetes networks, and PDUs to address variation in patient experiences between hospitals and regions.
- With nearly 11,000 surveys returned, participating paediatric diabetes units and families with diabetes have demonstrated strong support for service improvement through user engagement, despite disruptions to healthcare caused by the COVID-19 pandemic.
- Most (89% of parents and carers and 83% children and young people) agreed that they always had a positive relationship with their diabetes team.
- Staff teams were commonly described as helpful, friendly and supportive in comments made by children and young people with diabetes and their parents and carers.
- Both children and young people and parents and carers identified face-to-face appointments, and the help and advice their diabetes team provide, most frequently in their comments about what they found helpful about their clinic visits.
- Lower percentages of children and young people agreed that they always received enough information on managing exercise, illness, ketone monitoring, preparation and administration of glucagon, transition to adult services and new diabetes-related technologies.
- Most (89.1% of parents and carers and 79.% of children and young people) would recommend their clinic to friends and family if they had diabetes.
Individual clinic level reports and posters
Reports and posters have been produced for all clinics with 10 or more responses to the surveys. The reports and posters are 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 - firstname.lastname@example.org.