Information & support at diagnosis

Information & support at diagnosis

Statement 3.5

Patients should be signposted to information and support from patient organisations.

Why is this important?

Being told you have IBD can be an incredibly stressful time. But there are clear benefits when newly diagnosed patients are well informed about their condition and how it can be treated. Not only are they in a better position to adapt to the physical, social and psychological impact of IBD, but they also show improved ability and confidence to manage their condition.

When they get their diagnosis, people should have their condition explained clearly, understand the service being offered to them and know how to access ongoing support from the IBD team. Clinicians should be prepared to repeat this information as the person comes to terms with their new diagnosis.

It’s also important to give clear written information about IBD to people at the time and place of diagnosis, which reinforces what they are being told by clinicians. This information should be appropriate to the age, understanding and communication needs of the patient and carers.

Often, people feel much more able to take in the details of their condition, and the support available, once the initial anxiety surrounding diagnosis has passed. That’s why it’s also important to share with them the many other sources of information, which they can access at their convenience.

There are lots of voluntary organisations which can support people with IBD and their carers or family, both at the point of diagnosis and afterwards. They frequently offer many valuable services, tools and support – from practical, high quality information, including packs specifically designed for people who are newly diagnosed, to helplines and local networks of people in a similar situation. They can be a highly valued source of support throughout someone’s life with IBD.

When I was diagnosed, the Crohn’s & Colitis UK website made me feel less scared and was incredibly helpful. I’m now a member and feel welcomed and part of something massive - I am definitely not alone!

Daisy, diagnosed with Ulcerative Colitis