Co-designing community-based diabetic services responsive to the needs of children and young people

Diabetes control in UK children and young people is poor compared with other EU countries, and many young people disengage from diabetes services. This study aimed to tackle this challenge with a community-based, collaborative approach.

The study recruited and worked with a group of young people living with diabetes in Newham, East London, training them in research skills so they could:

• run community workshops
• interview other young people living with diabetes, their families and healthcare professionals
• analyse feedback on how to improve local diabetes services.

The young people involved co-designed the methods and approaches that led to the development of the Young Commissioners model.

This model is a practical example of how to involve young people in commissioning health and social care services. Involving patients and service users in commissioning and designing services makes for more appropriate care, which is more likely to be taken up by those who need it.

This approach can be used by other commissioners and service providers to guide their work on service improvement, including the Young Commissioner webinar series.

The Young Commissioner Webinar Series

Researchers also conducted a qualitative study, exploring how to enhance services to support the self-care of children and young people, clinically considered ‘disengaged’ by diabetes services. 

Two diabetes clinics in an ethnically diverse and socially disadvantaged urban area in the UK participated in the study. Eligible participants were young people between 10 and 25 years, living with Type 1 or Type 2 diabetes, who did not attend their last annual hospital appointment.

The development of the innovative and co-designed Young Commissioners model.

The model provides a framework to recruit, train and upskill young people to work with health professionals and commissioners, and to train healthcare professionals on how to work with young people, to design improved services that young people engage with and use.

Researchers also found that an holistic approach to young people's services and care was needed. Healthcare professionals should also focus on young people's interests, life goals and priorities during appointments, to increase engagement with diabetes care and services.

This is especially important for those from disadvantaged or ethnic minority communities, who are most likely to miss appointments and be considered ‘disengaged’ by their clinician. 

The Young Commissioners model has been identified by the National Institute of Health Research (NIHR) and NHS England Patient and Public Participation Team as best practice for its novel way of working with young patients and for producing tangible and meaningful impact in the field of health service design.

The study has produced a step-by-step guide, accredited eCPD, webinar series and expert support for commissioners and service providers to implement the model.

The findings have provided a resource for Newham Clinical Commissioning Group and local health care teams (e.g. Barts, Royal Free and Barnet hospital) to make informed decisions and act immediately to improve the delivery of services.

The model has been adopted by Dudley Council Integrated Commissioning Hub (2018-19) to help to achieve the Dudley Children’s Services Active Involvement Strategy 2017 in involving young people in commissioning functions/mechanisms across the whole system.

University of East London

Diabetes UK

NHS North East London Commissioning Support Unit (NEL CSU)

UCLPartners

Barts Hospital

Chase Farm and the Royal Free hospitals

NHS Newham Clinical Commissioning Group (CCG)

Dudley Metropolitan Borough Council