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. It is no surprise then that communication with and access to their healthcare teams received the highest median importance scores from patients in the 2023 IBD Patient Survey.
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 appropriate reassurance and guidance. They should be provided with clear, simple information about what IBD is and what to expect during tests and investigations. Information may also include support to manage stress and signposting to useful, reliable resources. The Patient Toolkit on the What’s Up With My Gut website, for example, includes a guide on tests, referral, and the road to diagnosis. Crohn’s & Colitis UK’s ‘How to Get a Diagnosis’ guide likewise provides detail around endoscopies, mental health, and understanding results. CICRA also have information on how a diagnosis is made for children.
Information should be provided in a range of formats, taking into account factors such as age, literacy skills, fluency in a language, emotional wellbeing, and any learning difficulties or sensory impairments.
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 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.