Why is it important?
Many people are waiting too long for an Inflammatory Bowel Disease (IBD) diagnosis. In the 2023 IBD Patient Survey, roughly one in seven (14%) of adults reported waiting more than a year to be referred to a hospital after speaking with a healthcare professional. In addition, almost a third of adults did not receive a stool test for inflammation prior to hospital referral. In terms of diagnosis, 67% of adults reported waiting for more than four weeks between being referred to hospital and a diagnosis being made, with 13% waiting for more than a year.
This is distressing for patients, who face painful and debilitating symptoms without a name – or effective treatment – for their condition, whilst also damaging the NHS. Delayed diagnosis results in higher likelihood of surgery, more expensive treatments, and a poorer prognosis1.
Primary care can find it difficult to identify potential IBD, as the symptoms often overlap with other conditions, such as Irritable Bowel Syndrome (IBS) and can be atypical, especially in children2. This is where referral pathways can help. Clear pathways and protocols, including the use of faecal biomarkers in adults, can speed up diagnosis and lead to better patient outcomes. Children should be referred to the nearest specialist children's service.
Universal access to faecal calprotectin testing in primary care is essential for early identification of gastrointestinal inflammation. However, availability remains inconsistent, with 32% of IBD patients in 2023 benchmarking stating they were not offered stool testing before diagnosis. To address this, primary care providers should have equitable access to faecal biomarker testing.
The National Primary Care Diagnostic Pathway for Lower GI Symptoms is also a useful resource that can help create smoother join-up between primary and secondary care. Guiding primary care clinicians from symptoms to potential diagnoses and recommended investigations, the pathway ensures the right tests are done at the right time, leading to quicker and more appropriate referrals.