New checklist to support IBD patients from the Patient Information Forum (PIF)

Guest post by Jane Cox, Patient Information Forum.

Are you happy with the amount of information that you have received, on diagnosis and since, from your IBD department? Has the information you have been given helped you to understand your condition and to take part in decisions about your treatment and care?

We hope the answer is yes. But we know for many people (with all sorts of long-term conditions, not just IBD), the answer is no. 

At the Patient Information Forum, we know that ‘information’ is much more than just a leaflet. You need the right information at the right time, given to you in a way that you understand. Clear information when diagnosed is essential, but you need individualised information as your condition progresses as well ‐ for example, when considering or starting new treatments or surgery, when you have acute bouts of illness or are in remission, or when other aspects of life impacts your condition, such as another illness, travelling or having children. 

We have been speaking to lots of patients, doctors and nurses recently about how NHS services can improve the information flow to people who have long-term conditions.  

There’s lots of things that need to change and one of the things we want to help with is to support patients to ask questions when they have appointments. Hopefully this will reduce those frustrating feelings many of us have after an appointment, such as, ‘argh, I forgot to ask about”¦’, or ‘if only I had been told about”¦’.

With this in mind, we have been working with an IBD service to develop a ‘patient information checklist’. It’s a very straight-forward set of questions for you to have a think about before any appointment you have, to help you make the most of the appointment and to come away with all the information you need.

You can download the checklist here

We’d love to know what you think of it ‐ if you use it, please spend 2 minutes filling in our survey here: . Your feedback will help us make the checklist more useful and reach more people living with IBD.

About the Patient Information Forum

The Patient Information Forum (PIF) is the UK membership organisation and network for people working in, and involved with, healthcare information and support. Visit for more information.

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