Practical steps to help ensure that every child and young adult living with diabetes in England receives high-quality care and support, regardless of where they live, are outlined in GIRFT’s latest national report.
The new GIRFT national report for diabetes: children and young adults (CYA) offers the most comprehensive national picture to date of how diabetes services for CYA aged 0-25 are organised, how care and outcomes vary, and what systems can do to adopt best practice and deliver equitable, modern care.
The report brings together the findings from a far-reaching national review of all 42 Integrated Care Boards (ICBs); a joint initiative between GIRFT and the NHS Diabetes Programme. GIRFT clinical advisor Dr Dita Aswani (a consultant paediatrician at Sheffield Children’s NHS Foundation Trust specialising in diabetes and weight management) authored the report following meetings with clinical leaders, managers, commissioners, regional network teams, charitable partners and patient advocates in each ICB, to interrogate their data together and agree local priorities.
Around 56,000 0-25-year-olds have type 1 diabetes in England and another 9,000 have early onset type 2 diabetes. The management of diabetes in childhood and young adulthood shapes future health, so providing high-quality care can support a person’s safety, emotional wellbeing, independence and outcomes throughout their life.
Children and young adults living with diabetes make hundreds of daily decisions about insulin, food and activity, supported by their families and caregivers. This continual self-management makes reliable access to high-quality clinical care and psychological support fundamental to maintaining safety and preventing deterioration. Young adulthood (19-25) is recognised as a particularly vulnerable time, when reduced support from caregivers and increased expectation of independence can lead to rising HbA1c levels, more hospital admissions and a loss of confidence in self-management.
GIRFT’s 138-page national report presents the findings of our review, highlighting areas of significant variation nationally, and featuring examples of best practice from teams across the country.
Overarching recommendations for ICBs
Three overarching recommendations are made for ICBs to help achieve a significant reduction in unwarranted variation:
- Leadership and accountability: create a clear, ICS-wide governance and accountability framework for the 0-25 diabetes pathway, with explicit clinical leadership at ICB level and across all commissioned services.
- Data, intelligence and insight: commission and govern a unified ICS-wide data and intelligence function for the 0-25 diabetes pathway, providing a single, shared and accessible version of the truth that generates actionable insight.
- Standardisation of care: define and implement nationally agreed, minimum standards of care for children and young adults with diabetes, grounded in evidence and clinical consensus.
Actionable steps for ICBs, trusts and clinical teams
The overarching recommendations are supported by specific actions for quality improvement in six areas where unwarranted variation is most pronounced and where improvement can have the greatest impact on outcomes, safety and equity. Clinical teams and ICBs can select the actions that best fit their priorities and context to take forward. The six domains of unwarranted variation are:
- diabetes health outcomes (HbA1c);
- essential health checks;
- emergency admissions;
- access to hybrid closed loop (HCL) technology;
- young adult care (19-25 years old);
- systems governance and workforce.
Read the full report for more detail on the six domains of unwarranted variation >
Dr Dita Aswani, who led the national review, said:
The level of engagement from stakeholders in all 42 system reviews has been admirable. Despite pressures of financial instability and organisational change, colleagues discussed and interrogated the data with interest and played an active role in shaping their own local recommendations.
What came through was optimism, drive, compassion, and a sincere desire to improve patient care and outcomes.
I thank everyone for their time and preparation, honesty, engagement, and – now that the findings are shared and the report published - their energy in addressing their local ICB priorities.
Colette Marshall, chief executive of Diabetes UK, said:
Children and young adults with diabetes require support that is adapted to their individual needs and life stage and can meet them where they are.
The findings in this report show how timely, co-ordinated care is essential to improving health outcomes and quality of life. This is true for all children and young adults with diabetes, and especially so for those who are at higher risk of experiencing poorer outcomes, such as those making the transition between paediatric and adult services and the rising number of young people with type 2 diabetes.
We look forward to continuing to work with the NHS, partners and communities to support the implementation of these recommendations and to ensure that every child and young adult with diabetes is supported to live well now and in the future.
