Jen is an IBD patient herself (diagnosed in childhood), parent of a young IBD patient, patient advocate and a NHS Patient Entrepreneur. She is passionate about raising awareness of the impact of chronic disease on young peoples’ mental health, and the importance of educating and supporting young patients who live with a chronic disease.
For the past year, Jen has been an ‘expert by experience’ volunteer with the team, a new role created specifically to encompass her and Seb’s activities. Jen attends weekly outpatient clinics, connecting with families, offering informal support and information, and ensuring optimum communication between families and the team. With Seb, she is working to create a sense of community where families can begin to support each other, a vital addition to the care they receive from the clinical team. To complement the in clinic work, there is a Facebook group which gives families another platform to connect and seek support.
Working alongside paediatric IBD patients, their families and healthcare teams Jen spent two years writing and illustrating Me (and IBD), a colouring journal designed to support young IBD patients through their diagnosis and beyond. The journal now forms part of standard care for younger patients, and is also available to young patients at other PIBD centres and through IBD charities.
Jen co-creates the research newsletter with the team, and co-organised and hosted the team’s first annual family day in April 2024. She is also involved in the annual Young Scientist Days, co-creating the lab books and supporting families on the day.
Away from clinic, Jen has established and hosts a programme of virtual Hangouts, a regular online evening meeting for families in need of support. More recently she has added an Expert Hangout programme, where members of the team give presentations and answer questions on topics nominated by families. These hangouts are well attended, and recordings are made available to families who cannot attend.