Summary
Supporting people with diabetes to effectively self-manage their condition is key to reducing their psychological distress, improving self-management and achieving long-term health outcomes that benefit both the person living with diabetes and their wider healthcare and social systems. For vulnerable young people, the addition of youth work allows services to provide bespoke interventions that are tailored to the individual needs of young people, while working at a population level to increase education and management confidence through the use of resources that are developed for, and with, the young people who will use them.
Innovation
Many people struggle to manage their type 1 diabetes, with adolescents and young adults demonstrating the highest levels of difficulty and worst management because of psychological distress, interpersonal problems, plus social and environmental stressors. Putting processes and support in place to protect young adults as a priority group can improve short- and long-term health outcomes, as well as reducing burdens on the NHS. BCUHB had already invested in psychological support for young adults with type 1 diabetes, but many young people continued to struggle, owing to their complex needs, which often led to disengagement with services. The pilot project trialled expanding the role of an existing youth worker from the Wrexham paediatric diabetes team on a temporary basis and had three aims: to investigate whether the youth worker could positively impact population health though promotion and use of digital information platforms; to find engaging ways to deliver diabetes education, and to support a small population with complex needs in individual youth work interventions. In 2006 Wrexham County Borough Council, in partnership with Wrexham Maelor hospital (WMH) Paediatric department, gained Big Lottery funding for a five-year project working with young people attending hospital with self-harming behaviours. The Inspire (Youth Work in Hospital) team secured ongoing grant funding once that finance had ended. Over time, the team started to work with a small number children and young people who were struggling to manage their type 1 diabetes. The paediatric diabetes youth work service has consistently delivered excellent outcomes for children with diabetes, and was identified as an area of excellence in a 2023 RCP peer review. However, funding restrictions meant youth work input ceased when the young person turned 18. Health-board wide adult diabetes services, paediatric services, psychology services and Inspire discussed ways to commission the pilot project. Using slippage monies from an underspend in the Adult Diabetes Psychology budget, a youth worker with significant experience of working with children with diabetes was seconded from Inspire for 12 months at 0.8 whole time equivalent to the young adult diabetes service at WMH. Project oversight and clinical supervision was provided by the diabetes psychology team, with overall line management responsibility with Inspire.
Equality, Diversity and Variation
Young adults aged 17-25 are at high risk of poor diabetes self-management, with suboptimal glycaemic control and a higher incidence of emergency admissions due to diabetes mismanagement. Psychological issues including depression, anxiety, eating disorders and suicidal ideation are consistently found at higher levels in those living with diabetes and, as increased psychological distress reduces diabetes management and increases Hba1c, this creates a toxic ‘vicious cycle’. Many also have physical, psychological and social issues that interact with, and further compound, their difficulties in self-managing diabetes. Young adults rely on adult diabetes services, yet barriers include differences in the service they experience after transition, a lack of preparation for these differences, plus a lack of tailoring of adult services to their individual needs. Further, despite having psychology provision in the young adult diabetes team, local data indicates that young men are less likely to engage with ongoing therapy. The need for specialist services and clinic models has been recognised in Wales.
Results
Having the youth worker meant resource was focused on improving self-management for young adults. The youth worker made changes at a population level by increasing uptake of a digital diabetes information and communication app (‘Digibete’) and developing an online version of a group diabetes education programme (‘Seren Connect’) across the health board. All resources created by the youth worker were co-produced with a young adult advisory group. The youth worker also held an individual caseload of young adults with complex needs who were struggling to manage their diabetes. Many had long histories of disengagement with diabetes services despite additional input from the diabetes MDT, and were already starting to experience significant diabetes complications as a result. A bespoke approach to support was taken with each young person, based on what mattered to them personally. The project significantly increased pan-BCUHB uptake of digitally delivered diabetes information for young adults and identified strategies to improve uptake of education on a population basis. It showed that youth work intervention work was well received by young adults and effective, with overwhelmingly positive patient ratings. The individualised approach allowed the youth worker to support them to reach their goals, re-engage with the diabetes team and enjoy improved outcomes in many areas of life. Further, as the youth worker worked as a co-therapist with the psychology team, supporting the most vulnerable individuals, the burden on overstretched diabetes staff and the wider healthcare system was reduced. The individual youth work resulted in reductions in the number of emergency attendances to hospital, improved attendance rates for clinic appointments and increased engagement with the specialist psychology service. This was especially significant for those who had never attended clinic previously. There are likely to be great cost savings to the NHS, society and the young people.
User Feedback
The positive experiences of the young adults were echoed by the reports of the healthcare professionals within the young adult diabetes team.
Dissemination and Sustainability
A service evaluation report is being circulated to heads of service, the BCUHB diabetes board and the All Wales Diabetes Network, with recommendations that the pilot is scaled up across the wider health board, and commissioned as an 11-25 service to offer seamless transition. Further promotion will be through conference presentations and publishing outcomes in peer-reviewed journals.
