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OC5 Mind the gap: the ever-widening chasm between UK IBD standards of care and UK Paediatric IBD service provision

flgastro · 2026-06-29 · canonical JSON source

6 visible annotations · policy: published · automated confidence ≥ 75.00%

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The IBDUK Standards, published in 2019, 1 define the key parameters for delivering high-quality healthcare for IBD patients. Lengthy delays in recognising, diagnosing and instigating treatment for children and young people with suspected IBD not only results in a deterioration in physical health at initial presentation but also increased psychological distress due to prolonged uncertainty. With an ever-rising paediatric IBD incidence and significant post-pandemic operational delivery challenges, getting it right first time for children and young people with suspected IBD has never been more crucial.In 2023 IBDUK designed and distributed surveys2 to patients and their families as well as all UK Paediatric IBD services, with the aim to benchmark current UK Paediatric IBD care to the 2019 standards. Tabulations assessed the proportion survey responses to each standard question and categorical outcomes were compared using frequencies (%) and Chi -square test.In 2023 the UK had 6786 Paediatric IBD patients, of which 651 patients (9.6%) responded. Twenty-six tertiary IBD services, with a mean of 260 IBD patients per centre and 76 new IBD patients annually, provided feedback. The mean diagnostic age was 12.4 years with IBD classification of 60% Crohn’s Disease, 32% Ulcerative Colitis and 8% IBDU. Service governance was adequate in most units. 92.3% of services had a named IBD lead consultant but only 65.4% had a formally established IBD leadership team. Locally agreed policies and protocols were established for steroids (70.9%), immunomodulators and biologics (95.9%) and shared care immunomodulator monitoring (75%). The mean whole time equivalent (WTE) workforce in the core Paediatric IBD MDT is demonstrated in figure 1.Only 50% of patients with suspected IBD had an initial clinic appointment within the 4-week target. Diagnostic endoscopic evaluation was performed within the 4 weeks in just 54.2% patients and merely 8.3% of histopathology reports were available to IBD clinicians within 5 working days. Completing phenotypic classification with small bowel imaging within 4 weeks, thus allowing risk stratification to optimise upfront treatment, was achieved in only 16% of patients. The majority of new IBD patients, 70.2%, wait up to 3 months for completion small bowel imaging. However, 100% of patients started treatment within 1 week of confirmed IBD diagnosis. Of those with an established IBD diagnosis, 46% reported to have had an IBD flare in the last 12 months. Most patients (74%) received a response with a flare action plan within the 48-hour target, yet 25% are waiting more than one week to start treating a flare.The Paediatric IBDUK data reflects that most services are failing to meet key diagnostic and treatment targets, with many clinicians locally evidencing that in the intervening time since the survey the chasm has further grown. It remains a call to all UK Paediatric IBD centres to advocate at a national level for increased investment to improve resources and thus rapid access to diagnosis and treatment if we are to shape a better future for our vulnerable patients.References IBD UK Standards 2019. Published online at https://s3.eu-west-2.amazonaws.com/sr-crohns-craft/documents/IBD-Standards-Core-Statements.pdfIBD UK report 2024. Published online at https://s3.eu-west-2.amazonaws.com/sr-crohns-craft/documents/IBD-UK-National-Report_7OCT_v9_WITH-HYPERLINKS_compressed.pdfAbstract OC5 Figure 1Multi-disciplinary team workforce whole time equivalents (WTE) per UK PIBD service