Why is it important?
Clear information supports and empowers people to feel in control and better self-manage their condition. That's why it's so important for people to know what's happening at every stage of their journey.
Patients should be offered clear information about:
- IBD itself
- The structure of the IBD service
- Patient organisations, including how to contact them and the services they provide.
Giving people accessible information runs from pre-diagnosis, to diagnosis and ongoing care.
It’s important to remember that not all patients will have the same information needs at each stage of their journey. What’s more, they will understand and process varying amounts of information depending on different factors. These include their age and literacy skills, fluency in a language, how overwhelmed or resilient they’re feeling, and any learning difficulties or sensory impairments.
Information should be provided in a range of formats, including face-to-face, written, visual, online and audio/video. This can be given to patients at key points, such as endoscopy, in wards or as part of a service open day.
IBD services should produce information about the structure of their service. For example, ‘who does what and who to contact when’ (including advice line numbers and email addresses). This can be made available with clinic letters, as business cards or as part of a personalised care plan.
Patient organisations, including Crohn’s & Colitis UK, CICRA and the Ileostomy & Internal Pouch Association, all produce high quality, accredited patient information that is peer reviewed and regularly updated. Healthcare professionals can order paper copies of posters, leaflets and guides and signpost to online information.