Expert by experience volunteer

After several years of my active but unofficial support of the pIBD team at Addenbrooke’s hospital in Cambridge, in 2023 the team introduced a new role - ‘expert by experience’ patient volunteers. 

The role, which was specifically created for myself and a colleague, allows people who are living with IBD, and/or have first hand knowledge of caring for a young person who has IBD to share their own knowledge and experiences, providing accessible and relevant support to young patients and families in clinic and on the wards. 

The purpose behind this role is to create a sense of community within the hospital’s pIBD cohort, encouraging them to play an active role in their own health journeys, as well as giving and seeking support from each other, relieving some of the burden on clinical staff. Equally, by offering a previously unexplored avenue of communication between the clinical team and patients, the team can gain invaluable insights into the challenges their patients and families face, ultimately driving service improvement and patient care.