Information for patients

Information for patients

Statement 2.4

All patients should be provided with a point of contact and clear information about pathways and timescales while awaiting the outcome of tests and investigations.

Why is it important?

Awaiting a diagnosis while you are suffering from new and often debilitating symptoms – including rectal bleeding, change of bowel habit, pain and fatigue – can be a very stressful time.

Patients may have no or limited knowledge of IBD and may worry about their long-term prognosis.

As well as fears for the future, untreated symptoms may affect daily life very severely. For example, patients may have to take time off work, school or college. Without a clear diagnosis, employees can be at risk of disciplinary action for repeated absences or poor performance.

Before referral to an IBD specialist – when IBD is suspected and a patient is awaiting the outcome of blood or stool tests or is on the endoscopy waiting list – the GP is the main point of contact.

At this stage, the patient should be given contact information for relevant patient organisations and given appropriate reassurance and guidance. This should include clear, simple information about what IBD is. It may also include support to manage stress and what to expect during tests and investigations.

Once the GP has referred the patient, they should also advise them that the IBD Standards and NICE quality standard on IBD state they should have a specialist assessment within four weeks, or more rapidly if clinically necessary.

Not all services are currently able to manage meet this standard, but it should be possible by implementing a local referral pathway. If local timescales exceed four weeks, the patient should be kept informed.

The IBD Standards also set timeframes for access to endoscopy and imaging (MRI/CT) and for histopathology reporting.

Further information

Information and support for patients: