The three-year project, ‘Join Us On Our Journey’, looked at children and young people with type 1 diabetes treated by one of nine healthcare trusts in Yorkshire and the Humber. It also incorporated feedback from patients, their families and the professionals involved in their care.
The research aims to develop a model of care to improve the management of children and young people with type 1 diabetes in England.
Project leader Dr Nicky Kime said inconsistencies were uncovered between and within the type 1 diabetes services and that all nine sites in Yorkshire and the Humber had a different way of working and managing patients. She said: “One of the key things that came out of the research was that children and young people with type 1 diabetes need to be better informed about the transition process. Our research found that some people weren’t even aware that they were in transition, or what it meant. Being in transition can be a confusing time for young people and the care, support and information they receive about the transition process is vital.”
The study found that young people and parents received conflicting information from consultants and diabetes nurse specialists.
“The UK has the worst rate of type 1 diabetes in Europe and the communication between the young people, parents, paediatric and adult diabetes teams is regarded as essential to improving care,” said Dr Kime, adding that in general, psychological support was severely lacking with some services having no support whatsoever.
Anna Morton, Director of NHS Diabetes, added: “All too often we are finding discrepancies between services, particularly in transitional care. Equity of service is the key issue. We are working with the National Paediatric Diabetes Network to ensure that healthcare professionals are supported in improving local services. All children and young people should receive high-quality, cohesive care throughout their diabetes journey.”
One of the key recommendations in the report is that the trusts adopt a holistic approach to diabetes care and all young people and parents are actively involved. The main areas of concern highlighted were treatment, communication, psychological support, education, school and transition.
