Meet Jen and Seb, our Expert by Experience volunteers!
Our unique Expert by Experience volunteer role was created specifically for our service nearly two years ago. It gives people who are living with inflammatory bowel disease (IBD) or have experience caring for a young person with IBD the opportunity to share their extensive knowledge and experiences. This lived experience is incredibly valuable in providing meaningful and relevant support for our young patients and their families, both in the clinic and on the wards. Jen and Seb work hard to support families, directing them to reliable, trustworthy information and resources. They provide a listening ear at times when families can feel over whelmed and stressed, and allowing our families to speak with people who really ‘get it’.
At the heart of this role is the desire to build a sense of community within our families under the care of the paediatric IBD group, encouraging children, young people, and families to actively and positively engage in their health journey. Our volunteers are promoting peer support, where patients and families can both give and receive advice from each other, helping to ease some of the pressure on our clinical staff.
The role has also opened up a new way for the clinical team to better understand the challenges that patients and their families face. Improved two-way communication is providing insights that are directly leading to improved services and ultimately better care.
The best decisions usually come from bringing together different perspectives; our volunteers’ lived experience and better communicated patient needs, alongside the professional viewpoint, now plays a crucial role in shaping our healthcare services, truly benefitting our children, young people and families.
Out team feels incredibly lucky to work alongside our volunteers, and to be able offer this service to our young people and their families truly adds value to the care of our young people and families at CUH.
And our patients and families agree!
“It was nice to speak to a parent that totally understands what you are going through.”
“Jen was very understanding and empathetic about the situation as she has been through it herself so she knows how I’m feeling and gets my point of view.”
“Loved meeting the volunteers on the day we received diagnosis. They were brilliant at reassuring us and giving my child bite size information.”
“Lovely to chat to the volunteers. As we are still learning their input is great.”
“Lovely to talk to someone that had the same illness as my son and he could very clearly see she was getting on with life and it didn’t affect her every day.”