Success story - the IBD Patient Panel

Andrea is the Secretary of the IBD Patient Panel at the Royal London Hospital and was diagnosed with IBD when she was 13. Lisa is the Lead IBD Nurse Specialist at the Royal London Hospital. She represents the Royal College of Nursing in IBD UK and is the Project Manager for IBD Nursing at Crohn's & Colitis UK

The IBD Patient Panel at the Royal London Hospital in East London formed in 2017. We are a group of volunteers living with Crohn’s or Colitis and staff who meet every 6-8 weeks to discuss hospital services and how we can work together with the medical teams and hospital management to make changes to improve patient services and experiences. I have been a patient at the Royal London Hospital since I was 13 and diagnosed with IBD.

I joined the Patient Panel to help give something back to the hospital community and support the staff team who have supported me so amazingly since day one.

Andrea, Secretary of the IBD Patient Panel

The service provides excellent care but there is always room for improvement and ensuring the patients have the very best experience.

As a Panel we have already started making a huge difference to patients through our projects based on a Patient Experience Questionnaires that we drafted as a group, and gave out to fellow patients in outpatient departments, on the ward and in our infusion unit, asking for their views on the service and what could be improved. We have played a large part in getting the ‘Not Every Disability is Visible’ signs installed on accessible toilet doors. This will have a huge positive impact not only for people with Crohn’s or Colitis who feel stigmatised for needing the toilet facilities urgently but also for others with invisible disabilities. We have presented at the Hospital’s Learning and Teaching Day and our current project includes working together with the Outpatients Patient Panel to install self-check in systems in outpatients. With the support of the Crohn’s & Colitis UK East London Network we have also provided our Crohn’s and Colitis inpatients with a freezer to help make Enteral Nutrition more palatable.

We are always looking for new members to come and join us so whether you’re a patient, family member or member of Royal London Hospital staff from any department get in touch at ibdpatientpanel.rlh@outlook.com

Andrea, Secretary of the IBD Patient Panel at the Royal London Hospital

Our Patient Panel has developed into a really valuable resource for the IBD team. Having a group of service users who are able to comment on service delivery and provide us with feedback on areas of care including outpatient clinics, infusion services and inpatient experiences is a great way to make sure the patient voice is heard.

This has been my third attempt at setting something like this up at my trust, and I am therefore aware of many of the challenges which can get in the way of getting something like this off the ground. Finding motivated patients and working together to a common goal has proved the solution. Our Patient Panel developed a survey for our service users to encourage them to identify areas for the group to focus on, ideas including raising awareness of the conditions among ward staff and improving outpatient facilities were identified. This provided the group with purpose and I think helped to get us started.

Our Panel members have delivered education sessions to ward nurses, spoken at trust board level meetings, and helped run several open days and awareness stands over the last couple of years. They have also been a fantastic source of feedback for initiatives including the development of a patient app, updating patient information leaflets and acting as advisors for research applications and service developments.

Working with patients in this way has been really rewarding for me, I look forward to our meetings and enjoy being in a position to be able to say that we are now finding ways to develop our IBD service with a greater understanding of what is important to our users.

Lisa Younge, IBD Nurse Specialist

This way of working will be essential when we look to build on the results from the service self-assessment & IBD Patient Survey.

Lisa Younge, IBD Nurse Specialist at the Royal London Hospital