Summary
The challenges of caring for very young children with diabetes are well recognised. Dinky-Betes is an innovative diabetes service providing valuable peer support to children aged under 7 years and their families. A multidisciplinary team (MDT) comprising a health play specialist, a clinical psychologist, specialist nurses, dietitians and doctors work collaboratively to offer a friendly and supportive environment to optimise diabetes care, access to advanced technology and deliver developmentally appropriate targeted education. Dinky-Betes also nurtures emotional well-being through providing a safe space for children and their families to share experiences with positive clinical and psychosocial impact.
Innovation
In 2023, there were 45 children aged under 7 years in Leeds Children’s and Young Person’s (CYP) service accessing an under-12s’ clinic with a health play specialist and psychology support. A micro-MDT explored ways to improve support for them and their families. To improve access to technology, health outcomes and peer support, an under-7s first year of care (FYOC) pathway was introduced, as well as a dedicated under-7s clinic with activities organised by a diabetes health play specialist. Families requested support with procedural preparation, play and stories around diabetes, plus emotional well-being resources, alongside non-diabetes activities. Children also wanted to practise skills on their teddies. In July 2023, the monthly, play-based Dinky-Betes clinic launched. A clinical psychologist provides parallel support for caregivers. Children contribute to their MDT clinic appointment or play with peers. A diabetes nurse specialist supports diabetes care and carbohydrate-counted snacks are available. Clinical outcomes are collected alongside child and parental quality of life (QoL) scores. The team believes this is the UK’s first dedicated under-7s clinic.
Equality, Diversity and Variation
A total of 83% of 45 families within the service surveyed in April 2023 regarding a dedicated under-7s service said they wanted one. Clinic planning considered multiple factors, including school-age patients coming earlier in the morning, avoidance of toddler nap times, spoken languages, ethnicity, length of diagnosis and observed developing relationships. Reasonable adjustments are made for children with special educational and developmental needs. Children’s individual interests are explored with appropriate toys and activities. Primarily, Dinky-Betes is for children with type 1 diabetes, but a patient with monogenic diabetes has also benefitted. A total of 33 patients have accessed Dinky-Betes since July 2023, 52% of whom are male. Six ethnic groups are represented, although most are White British. Over a third live in the most socially deprived areas of Leeds. The FYOC pathway aims to provide hybrid closed loop (HCL) technology within 12 weeks of diagnosis. HCL technology is offered to all children using tailored educational resources, targeted play involving teddies, consideration of family preference and opportunities for peer support. Donated phones with data have helped six families to date. All Dinky-Betes patients are using CGM. Only three are on multiple daily injection (MDI) therapy, two of whom plan to commence HCL.
Results
The holistic and friendly environment has benefitted children, siblings and caregivers. MDT staff actively participate in play activities and provide opportunistic education. Children fearful of pump therapy have seen their peers wearing devices and wanted to try them, resulting in enhanced uptake of HCL systems, with positive impacts on glycaemic control and QoL for families. The health play specialist has normalised medical play using a pedagogical approach. Children have participated in tailored education, including procedural preparation for pump and sensor changes and carbohydrate counting under supervision. Themed story times have created opportunities to explore emotional well-being. Parents value meeting others in similar circumstances, with support fostered through careful consideration of appointment scheduling. Of the 33 patients, five transitioned to the older clinic at age seven and two can no longer attend. Ten patients are in their FYOC and have accessed Dinky-Betes since diagnosis. All children are using CGM, with all but three on HCL technology and two of these planning to start HCL. Seven children are participating in the Medtronic LENNY research study. Clinical outcomes, including HbA1c and CGM data, are collected alongside child and parental QoL scores using an adapted Likert scale and T1DAL measure, respectively. Clinical data is collected at three-monthly intervals, with preliminary six-month data demonstrating an overall reduction in median HbA1c from 57 mmol/mol (excluding FYOC data) to 53.5 mmol/mol, improved median TIR from 50.5% to 66.5% and stable time below range (TBR) at 3.0% and GV at 3.5. FYOC patients have a lower median HbA1c at six months compared to non-FYOC patients (47 mmol/mol cf. 59 mmol/mol), influenced by a higher TIR (67.5% cf. 56.5%), highlighting the challenges of maintaining clinical targets over time. Qualitative QoL data is collected with children. They fill in an adapted Likert Scale to identify positive and challenging experiences. A total of 57% of children one year or more post diagnosis noticed an improvement in their diabetes experiences since joining the clinic.
User Feedback
The Dinky-Betes clinic has been enjoyed by children, their families and the wider diabetes MDT. Positive feedback was gathered through questioning and direct observation and positive outcomes have been noted by HCPs. Dinky-Betes received the 2023 Leeds Children’s Hospital Kite Award for Innovation of the Year and the 2024 Peg Belson Award by the Society of Health Play Specialists.
Dissemination and Sustainability
As a tertiary service, Dinky-Betes has sufficient patient numbers for a dedicated monthly clinic. Access to an education space enables play-based activities to run alongside a standard MDT clinic appointment, with a diabetes health play specialist and a clinical psychologist. Educational and emotional well-being resources have been donated or funded by the families. Staff have secured £3,500 for Dinky-Betes and wider peer support activities across the age ranges from the Leeds Hospitals Charity. The aim is for all newly diagnosed under-7 patients to access Dinky-Betes. A dedicated under-7s FYOC pathway and parallel peer support activities, including teddy bear clinics and group activities, complement this model. Dinky-Betes has enhanced diabetes health outcomes, access to technology and psychosocial well-being for children and caregivers. The model could be adapted to smaller services with support from MDT members. The team would support any service wanting to implement a similar clinic.
