Empowering the inbetweeners: Young adult kidney care and beyond

Holly was diagnosed with chronic kidney disease in her mid-20s, and frequently found herself feeling alone and isolated in dealing with her diagnosis. She vividly remembers sitting in hospital waiting rooms or being admitted to a ward, surrounded by other patients many years older than herself, some of whom were very unwell, and thinking “Is this what my life will be like one day?”.

The thought of having to give up her plans for the future, her career as a teacher and her desire for a family one day was an intimidating prospect, so in an effort to counteract this isolation and reach out to other people in the same situation, she co-founded Young Adult Kidney Group in 2016.

The YAKG fills the gap for “the inbetweeners”; patients who are too old for paediatric kidney care but who still may not fully identify with the issues faced by older kidney patients. It has been part of Kidney Care UK since April 2022 and now has over 1000 members, ranging in age from 18-30.

Our members come from a wide range of backgrounds and medical circumstances and collectively make Young Adult Kidney Group a supportive community of people who really understand what it’s like to be a young person with kidney disease.

Alex is a Consultant in Renal Medicine at the Royal Devon and Exeter Hospital, and Senior Clinical Tutor at the University of Exeter Medical School. In 2014 he undertook the Tony Wing Fellowship, using systematic reviews, survey and routine data to describe the clinical and psychosocial status of young adults on RRT and his work was recognised with the Raine Award from the UKKA. He is involved in SONG-kids and the UKKA Transition and Young Adult special interest group.

Kay has worked as a paediatric nephrologist for nearly 20 years and consequently has seen many patients from early infancy through to adulthood. She is passionate about empowering CYP through shared decision-making during transition and advocating for better provision of services tailored to the needs of young adults. She also has expertise in AKI & haemodialysis. Kay is current Head of School of Paediatrics in Yorkshire and Humber plus Officer for Workforce Planning, RCPCH.