Background Delivering the “right care, at the right time, in the right place, by the right people” is a challenge for all healthcare services , but particularly so for subspecialties such as paediatric and adolescent rheumatology, where inequities in access to specialist care are known to exist . In the United Kingdom (UK), to help address this there is support for the development of clinical networks. A number of paediatric and adolescent rheumatology clinical networks are now evolving across the UK: their effect and role in the transition process between paediatric and adult services is unknown.
Objectives We explored the experiences of those involved to try and understand this further.
Methods Health professionals, young people with Juvenile Idiopathic Arthritis and their families were recruited via five National Health Service paediatric and adolescent rheumatology specialist centres and networks across the UK. Seventy participants took part in focus groups and one-to-one interviews. Data was analysed using coding, memoing and mapping techniques to identify features of transitional services across the sector
Results Variation and inequities in transitional care exist. Although transition services in networks are evolving, development has lagged behind other areas with network establishment focusing more on access to paediatric rheumatology multidisciplinary teams. Challenges include workforce shortfalls, differences in service priorities, standards and healthcare infrastructures, and managing the legacy of historic encounters
Conclusions Providing equitable high quality clinically effective services for transition across the UK has a long way to go. There is a call for more protected time, staff and resources to develop transition roles and services, as well as streamlining of local referral pathways between paediatric and adult healthcare services. In addition, there is a need to support professionals in developing their understanding of transitional care in clinical networks, particularly around service design, organizational change and the interpersonal skills required for collaborative working.
RCPCH. Facing the Future: Standards for Paediatric Services. Secondary Facing the Future: Standards for Paediatric Services 2011. http://www.rcpch.ac.uk/system/files/protected/page/FTFFull.pdf (accessed 21 Nov 2014).
Foster H, Rapley T. Access to pediatric rheumatology care - a major challenge to improving outcome in juvenile idiopathic arthritis. The Journal of rheumatology 2010;37(11):2199-202 doi: 10.3899/jrheum.100910.
Acknowledgements Our thanks go to patients and their families, and healthcare professionals who have participated in the project, without whom this work would not have been possible.
This work was supported by Arthritis Research UK Educational Research Fellowship Grant (number: 20123)
Disclosure of Interest None declared