The 2026 IBD UK Standards of healthcare service design and delivery for adults and children living with Crohn’s disease and ulcerative colitis

Abstract

Objective

Inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, requires consistent high-quality care to reduce variation in patient experience and improve outcomes. The IBD Standards previously published in 2009, 2013 and 2019 have provided an aspirational framework for best practice. Since 2019, two rounds of national benchmarking with patient engagement, healthcare professional (HCP) consultation and new evidence have highlighted areas for quality improvement (QI). We aimed to develop the 2026 IBD UK Standards of healthcare for adults and children, ensuring they reflect current and aspirational best practice and to support future QI initiatives.

Methods

A multidisciplinary working group of 18 HCPs and 4 people with lived experience assessed the 59 IBD standards from 2019, categorising them as needing no change, minor or major amendment or deletion. New standards were developed through iterative drafting and consensus review, with feedback incorporated from 47 external HCPs and a patient workshop. The 2026 standards remain aspirational, structured across seven domains: the IBD service, pre-diagnosis, newly diagnosed, flare management, surgery, inpatient care and ongoing care.

Results

The 2026 IBD UK Standards comprise 60 statements: 6 unchanged from 2019, 48 updated, 7 deleted and 6 new. Key themes include multidisciplinary, coordinated care with defined leadership; age-appropriate transition pathways; timely referral from primary care, access to diagnostic tests, treatments and surgery; patient-centred care, including better communication, personalised care plans, shared decision-making and support for self-management; holistic assessment and management of physical, nutritional and psychological need; QI and audit supported by electronic systems; research participation and innovation.

Conclusions

The 2026 IBD UK Standards provide a contemporary aspirational framework to drive consistent, high-quality, personalised care across the UK. They aim to reduce inequality, improve experience and outcomes through support for patient-centred shared decision-making, national benchmarking, service development, patient involvement and QI.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Previous UK inflammatory bowel disease (IBD) Standards in 2009, 2013 and 2019 were a key reference point for IBD quality improvement and audit cycles, providing an aspirational framework to reduce variation in patient experience and improve outcomes.

• IBD UK is a partnership of patient organisations, charities, specialist societies and royal colleges working to improve the quality of care delivered to people living with IBD.

• National benchmarking led by IBD UK in 2019 and 2023 has generated over 26 000 patient responses and metrics from 154 IBD services, highlighting ongoing disparities in care quality and a need for updated standards aligned with contemporary best practice and National Health Service (NHS) priorities.

WHAT THIS WORK ADDS

• The 2026 IBD UK Standards comprise 60 statements across 7 domains: 6 unchanged, 48 updated, 7 deleted and 6 new.

• The standards emphasise multidisciplinary leadership, structured transition pathways and patient involvement in service development. The standards also include defined timelines for diagnostics and treatment initiation, encourage improved communication, use of personalised care plans (PCPs), shared decision-making, holistic assessment (physical, nutritional and psychological), requirements for quality improvement, audit supported by electronic systems and research participation.

HOW THIS WORK MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• The 2026 IBD UK Standards provide a contemporary aspirational framework to drive consistent, high-quality, personalised care across the UK. They will underpin future national benchmarking and local audit, enabling identification of systemic variation and deficiencies in service provision to drive targeted quality improvement locally and nationally. The standards actively promote research participation and innovation, provide a robust framework to inform commissioning decisions and support policy alignment with NHS strategies across all UK nations.

Introduction

Crohn’s disease and ulcerative colitis are the two principal forms of inflammatory bowel disease (IBD). These chronic immune-mediated inflammatory conditions require long-term and often lifelong management, exerting a profound impact on all aspects of daily life, including education, employment, personal relationships and travel. For healthcare providers, IBD presents significant challenges: high-cost investigations and treatments, involvement of multiple specialties, unpredictable disease trajectories that can be interspersed with hospital admissions, surgical interventions and complex monitoring requiring close coordination between primary and secondary care.¹ Despite advances in treatment, disparities in the quality of IBD care remain.² This underscores the need for clear, measurable standards to define excellence and drive continuous service improvement.^{3 4}

Quality standards provide objective benchmarks against which service performance can be measured and compared. They define the characteristics and outcomes of high-quality care and differ fundamentally from clinical guidelines: standards articulate the ‘what’, the desired quality outcomes and generally high-level descriptors, while guidelines describe the ‘how’, specific actions to achieve those outcomes, tailored to individual patients’ needs. Standards typically encompass measures of structure, process and outcome,⁵ yet defining outcomes in chronic conditions such as IBD can be challenging, and their perceived importance may vary widely among those with lived experience.⁶

In the UK, IBD Standards were first produced in 2009,⁷ following the national IBD Audit initiated in 2005 (figure 1), which revealed wide disparities in care delivery.⁸ Developed collaboratively between clinical groups and the National Association of Crohn’s and Colitis, later becoming Crohn’s & Colitis UK, these standards aimed to ensure safe, effective and consistent high-quality care. Subsequent IBD Standards updates in 2013, ongoing rounds of the national IBD Audit and the formation of IBD UK in 2017, a coalition of professional bodies and patient charities (https://ibduk.org/about-ibd-uk), further reinforced the importance of lived experience in quality improvement (QI).

Figure 1. Timeline of IBD quality improvement and IBD Standards in the UK (parentheses to highlight the focus for each round of national audit). IBD, inflammatory bowel disease; NHS, National Health Service.

The 2019 IBD UK Standards were structured around seven domains of the patient journey⁹ and accompanied by a national benchmarking tool to evaluate adult and paediatric care against these standards.¹⁰ A key innovation was the inclusion of data from both patients and IBD services, ensuring the patient voice remained central to quality assessment.¹¹ Two rounds of benchmarking, conducted in 2019 and 2023, generated over 26 000 patient responses and data from 154 IBD services (with 177 services operating in the UK by 2023).^{12 13}

The benchmarking process provided a globally unique and robust evidence base combining healthcare service metrics and patient-reported experience measures (PREMs), revealing persistent variation in care delivery and identifying new priorities for QI. In response, we aimed to develop the 2026 IBD UK Standards to ensure they reflect contemporary best practice, remain fit for purpose as the benchmark for service quality and to drive future national and local QI initiatives.

Methods

Membership of the 2026 Standards development group

The IBD UK Board nominated members for a working group to take forward the update of the IBD UK Standards. The 16 current IBD UK member organisations representing professional groups and patients are shown in online supplemental box 1. Membership of the Standards development group was representative of people with lived experience and all healthcare professional (HCP) groups providing care to people with IBD. Where expertise was missing from the IBD UK Board, additional members were recruited. Membership consisted of four people with lived experience of IBD (DA, GBe, CB and VB), five consultant gastroenterologists (CAL, IA, CT, CS and ABH), one paediatric gastroenterologist (RM), two colorectal surgeons (SBan and VC), one radiologist (GBh), four IBD nurse specialists (PA, SBay, GM and LY), two pharmacists (FR and RR), two dietitians (AG and KK), a clinical psychologist (RD) and a commissioned project lead (CP). Standards development support was provided through Crohn’s & Colitis UK (MR, JT, CW and NW).

Principles and scope of standards development

The update of the IBD UK Standards for 2026 was guided by several key principles. The standards would be designed to remain aspirational of excellent care, driving QI and innovation while continuing to serve as the benchmark for audit and service evaluation. They were to recognise new evidence since the 2019 Standards and to align with the evolving NHS landscape, including priorities outlined in the NHS England 10-year health plan: Fit for the future,¹⁴ the Scottish Government Health and Social Care Service Renewal Framework,¹⁵ the Welsh Government long term plan for health and social care: A healthier Wales,¹⁶ and the Northern Ireland Strategic Framework for Public Health: Making Life Better.¹⁷ A complete rewrite was not considered necessary; indeed, iterative development, maintaining consistency and integrity and enabling longitudinal benchmarking and audit was determined as beneficial.

A continued principle was alignment with UK specialty guidelines for diagnosis and treatment of IBD, avoiding duplication of clinical management recommendations already addressed in the 2025 British Society of Gastroenterology guidelines.^{18 19} Each standard was intended to function as an independent statement, allowing services to use them flexibly for business case development, audit and QI initiatives across broad or discrete areas of practice.

The revision process was further informed by extensive 2019 and 2023 benchmarking data, which captured the lived experiences of over 26 000 patients and service-reported metrics from 154 IBD services.¹³ Particular emphasis was to be placed on aspects of care most valued by patients: timely access, effective communication, personalised care and overall patient experience across all stages of the care pathway, from pre-diagnosis to ongoing management.

Standards development process

Working group members reviewed all 59 of the 2019 IBD Standards. Each was assessed by all members with reasons documented for any proposed changes. Each of the 2019 standards was assessed as (1) no change necessary; (2) minor amendment; (3) major amendment and (4) delete. Where amendments, deletions or new standards were required, revised or new statements were drafted by CAL and ABH, then further refined by the working group. A wider consultation was then undertaken of IBD HCPs. The consultation was open for 6 weeks from May to July 2025. It was promoted using the professional societies within both IBD UK and working group members. In addition, Crohn’s & Colitis UK used their social media platforms and contact lists for further promotion. More specifically, an advertisement was placed in the British Society of Gastroenterology Live annual conference programme and promoted during the conference in June 2025. The consultation generated 47 responses. Professional backgrounds were as follows: 11 gastroenterologists, 10 IBD nurse specialists, 8 dietitians, 4 colorectal surgeons, 3 clinical psychologists, 2 pharmacists, 2 radiologists, 1 paediatric gastroenterologist, 1 paediatrician, 1 rheumatologist, 1 dermatologist and 3 responders did not specify their professional background.

In addition to targeting responses from HCPs, a call was put out by Crohn’s & Colitis UK to people with lived experience of IBD to provide feedback on the updated IBD UK Standards at an online evening engagement session. This was both to inform the standards update and to support future work by Crohn’s & Colitis UK to convert the standards into a patient-facing document. The patient engagement event was attended by 13 people with lived experience who were asked to review the updated Standards ahead of the meeting.

Following the consultation and the patient engagement event, all responses were reviewed over two meetings of the working group. All agreed changes were made, and the working group agreed the final Standards in September 2025.

The working group made a deliberate decision not to introduce a hierarchy or importance grading for the statements. While prioritisation approaches may be valuable within local QI frameworks, the Standards were intended to function as a coherent set of requirements that collectively define high-quality, patient-centred care. We recognised the limitation of a fixed hierarchy when service needs are locally variable and dynamic over time, as a standard may represent a critical risk in one service yet be fully met by another. The relative importance of different statements may vary between patients and through the course of a patient’s journey. The working group also considered the risk that lower ranked statements may receive reduced attention in QI efforts that could result in important areas of care receiving little or no implementation effort.

Results

The 2026 IBD UK Standards retain an aspirational focus to drive optimal care and promote QI by hospital services and in primary care. Communication and information provision are highlighted throughout as they are of central importance to patients. As in 2019, the 60 standards are organised around seven domains with key themes for care in each (figure 2). Six standards remain unchanged from 2019, 46 standards were amended (this includes both major and minor amendments, and of these, two standards were split giving 48 in total) and there were six entirely new standards (online supplemental table 1). Seven 2019 standards were deleted (online supplemental table 2). Reasons for deletion were predominately repetition within other standards statements or due to the statement referring to an aspect of clinical guidance covered by the British Society of Gastroenterology guidelines for the management of IBD.¹⁸

Figure 2. 2026 IBD UK Standards domains and associated themes. IBD, inflammatory bowel disease; MDT, multidisciplinary team; PIFU, patient-initiated follow-up.

Domain 1: The IBD Service

The IBD service Standards (box 1) form the core of the design and delivery of care. At the centre of this is a defined MDT. The core team members should all have a specialist interest in IBD and include the following professional groups: consultant gastroenterologist, consultant colorectal surgeon, IBD nurse specialist, stoma care nurse, dietitian, pharmacist, psychologist, radiologist and histopathologist. The team should include a named co-ordinator to support MDT meetings, clinical database management and service audit (figure 3). Core members of the MDT should collaborate with wider services as needed, for example, dermatology, rheumatology, occupational therapy and obstetrics. Communication and collaboration with primary care is emphasised.

Box 1. IBD Service Standards.

Statement 1.1: Patients should be cared for by a defined multidisciplinary team (MDT). For children and young people, this must include a paediatric gastroenterologist.

Statement 1.2: All patients should have a named specialist(s) responsible for their care.

Statement 1.3: MDT meetings should take place regularly to discuss appropriate patients and be organised by a named coordinator. Patients should receive appropriate feedback from MDT meetings.

Statement 1.4: A structured transition programme should be in place to support teenagers and young people with IBD, led by a paediatric and/or adult gastroenterologist.

Statement 1.5: The IBD service should have a leadership team that includes, as a minimum, a gastroenterologist and/or a paediatric gastroenterologist, colorectal surgeon, IBD nurse specialist and manager, who have responsibility for managing, monitoring and developing the service.

Statement 1.6: The IBD leadership team should work with or include an expert pharmacist in IBD to ensure good medicines governance, including medicines optimisation and cost-effectiveness; an expert dietitian to ensure appropriate oversight of dietetic assessment and intervention; and a psychologist with an interest in IBD to coordinate psychology provision within the service.

Statement 1.7: IBD teams should engage with continuous QI and participate in local and national audit. This should include feedback from patients on outcomes and experiences.

Statement 1.8: Patients and parents/carers should have a voice and direct involvement in the development of the service.

Statement 1.9: All patients with an IBD diagnosis should be recorded in an electronic clinical management system.

Statement 1.10: In their clinical encounters, patients should receive personalised signposting to easily accessible information about IBD, the local IBD service and patient organisations in a variety of formats that meet all needs.

Statement 1.11: Where clinically appropriate, radiological investigations should aim to prioritise the use of MRI and ultrasound as they do not use ionising radiation. These should be accessible within 6 weeks of referral for routine care, within 2 weeks for urgent IBD referrals and within 24 hours for patients requiring admission.

Statement 1.12: Endoscopic assessment should be available within 6 weeks of referral for routine care, within 2 weeks for urgent IBD referrals and within 24 hours for patients requiring admission.

Statement 1.13: Histological processing and reporting should take place routinely within 1 week or within 2 working days for reporting of urgent biopsy samples.

Statement 1.14: A locally agreed policy should be in place for immunomodulators, targeted small molecules and biologics, including pretreatment tests, vaccinations, prescribing, administration and monitoring.

Statement 1.15: Patients should be fully informed about the benefits and risks of all treatments including medical therapy, diet and surgery.

Statement 1.16: Appropriate nutritional therapy should be available to patients with IBD, including exclusive enteral nutrition for Crohn’s disease and parenteral nutrition where required.

Statement 1.17: All members of the IBD team should be trained and supported to develop competencies and be educated to a level appropriate to their role with access to professional support, supervision and funded study leave.

Statement 1.18: IBD services should participate in research. Patients should have the opportunity to participate in observational or interventional studies.

Figure 3. The IBD multidisciplinary care team. IBD, inflammatory bowel disease; MDT, multidisciplinary team.

The 2026 IBD Standards reinforce the central importance of patient-centred care, underpinned by timely communication with patients and their general practitioner (GP). To achieve this, MDT meetings should occur regularly, with feedback provided to patients. All patients should have a named specialist responsible for their care, and the service should have a leadership team to oversee delivery and continuous service development. Statement 1.2 was separated from 1.1 to emphasise the value patients placed on having a clearly identified lead clinician.

Optimal care requires a comprehensively staffed MDT. The suggested whole-time equivalent staffing for the core MDT was not reviewed in this update and so remains the same as referenced in the 2019 Benchmarking surveys.¹⁰ Structured transition services for children and young adults remain a priority, with age-appropriate membership of the MDT including a paediatric gastroenterologist, IBD nurse specialist and surgeon as indicated.

Well-being support is a critical component of holistic care. Despite being recognised as of high importance to patients in 2023 benchmarking,¹³ only 20% (2539/12 631) of patients were asked about their mental health or emotional well-being and questions about pain were raised in only half of consultations.¹² Prompt assessment and intervention should be available as required by a psychologist with a specialist IBD interest or via IBD staff with psychological training who can provide initial support and triage. Lived experience members of the IBD Standards group emphasised the importance of having access to psychological support throughout the patient journey.

Timely access to investigations remains essential. Statements 1.11 and 1.12, previously a single statement, now distinguish between radiology and endoscopy, emphasising avoidance of ionising radiation where possible and setting clear timelines for urgent and routine care.

Unfortunately, 82% (11 964/14 636) of the 2023 IBD benchmarking adults reported not being given the opportunity to give feedback about their care in the last 12 months and patient feedback is a powerful tool in driving QI.¹² Continuous QI should be supported through digital tools, including online surveys.

Finally, all services are encouraged to be research-active and participate in local and national audit, for which the 2026 Standards will form the benchmark. Research engagement by services is associated with improved patient-reported care quality.²⁰

Domain 2: Pre-diagnosis

The updated pre-diagnosis Standards (box 2) reinforce the need for timely referral of patients with suspected IBD through clearly defined pathways from primary to secondary care. This is critical given that 2023 benchmarking data indicated that approximately a quarter of patients waited for over a year from symptom onset to diagnosis.¹² Diagnostic delays are associated with negative impact on treatment outcomes.²¹

Box 2. Pre-diagnosis Standards.

Statement 2.1: There should be locally agreed adult and paediatric policies and pathways for referral of suspected IBD between primary and secondary care that include the availability of faecal biomarker testing—calprotectin and/or faecal immunochemical test.

Statement 2.2: Patients who are referred with suspected IBD should be seen in clinic or attend a ‘straight to test’ procedure within 4 weeks of referral, or more rapidly if clinically necessary.

Statement 2.3: Patients presenting with acute severe colitis should be admitted to a centre with medical and surgical expertise in managing IBD that is available at all times.

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.

Universal access to faecal calprotectin testing in primary care is essential for early identification of gastrointestinal inflammation. However, availability remains inconsistent, with 32% (1005/3145) of patients with IBD in 2023 benchmarking stating they were not offered stool testing before diagnosis.¹² To address this, primary care providers should have equitable access to faecal biomarker testing.

In many localities, direct referral for diagnostic procedures such as colonoscopy may be more efficient than an outpatient clinic appointment. Where this approach is adopted, transparent guidance and defined waiting times must be communicated to patients. Additionally, expert emergency care should always be available for those presenting with acute severe disease.

Domain 3: Newly diagnosed

Communication of a diagnosis should be personalised and delivered in a manner that meets patient preferences. While face-to-face consultations remain the most common approach, the availability and convenience of virtual consultations can facilitate access to specialist expertise, particularly for patients in rural or island communities. Rapid communication to GPs is essential to ensure integrated care across primary and secondary care services.

The newly diagnosed Standards (box 3) emphasise specialist-led care and prompt initiation of treatment following a comprehensive assessment of all aspects of the patients’ disease activity, nutritional status, mental health and patient priorities. Shared decision-making is central to this process.

Box 3. Newly diagnosed Standards.

Statement 3.1: All newly diagnosed patients with IBD should be seen by appropriate specialists from the IBD MDT.

Statement 3.2: Following diagnosis, all patients should have a full assessment of their disease activity, nutritional status, mental health, fatigue and extraintestinal manifestations. This should include growth status for children and teenagers and an infection screen for patients likely to require immunomodulators, targeted small molecules or biologics.

Statement 3.3: Patients should be supported to make informed, shared decisions about their treatment and care to ensure these take their preferences and goals fully into account.

Statement 3.4: After diagnosis, all outpatients with IBD should have a treatment plan.

Statement 3.5: After a confirmed diagnosis, treatment should be started immediately where clinically appropriate, for example, oral mesalazine, oral corticosteroids or topical therapies. If treatment with an immunomodulator, targeted small molecule or biologic is required, this should be started within 2 weeks of completion of the necessary pretreatment screening tests.

Statement 3.6: Once a diagnosis has been confirmed, patients and GPs should be informed within 2 days.

Statements 3.4 and 3.5 have been separated to distinguish between formulation of a treatment plan (which may require pretreatment investigations) and initiation of therapy. These steps now have defined waiting time standards. Even when diagnosis occurs during colonoscopy by a non-IBD specialist, immediate treatment should be offered where appropriate, for example, oral or topical mesalazine therapy for ulcerative colitis. For therapies requiring pretreatment tests, such as immunomodulators, targeted small molecules or biologics, treatment should commence promptly once results are available with bridging therapies, for example, enteral nutrition in Crohn’s disease, considered where appropriate.

Following diagnosis, patients should have rapid access to surgical, dietetic, nursing and psychological support as indicated. Rapid communication of diagnosis and treatment plans to primary care remains a priority to support continuity and coordination of care.

Domain 4: Flare management

In the 2023 IBD benchmarking survey, 56% (8644/15 375) of patients reported experiencing a flare within the previous 12 months.¹² Although patients with recent flares may be more likely to participate in such a survey, these data nonetheless suggest substantial symptom burden. The 2026 IBD UK Standards, therefore, emphasise the need for robust pathways and protocols to support prompt flare management across primary and secondary care (box 4).

Box 4. Flare management Standards.

Statement 4.1: Local primary and secondary care treatment pathways and protocols should be in place for the management of patients with IBD experiencing flares.

Statement 4.2: All patients with IBD should be given advice about what to do in the case of a flare and who to contact.

Statement 4.3: Access to specialist advice should be available to patients to guide early flare intervention, including access to a telephone/email advice line with response by the end of the next working day.

Statement 4.4: Following initial advice-line response for a flare, further review should be planned at a clinically indicated interval and communicated to the patient. Where a treatment plan is agreed, it should be initiated within 2 days.

Statement 4.5: Steroid treatment should be managed in accordance with guidelines and audited on an ongoing basis, with clear guidance to primary care and patients.

Some patients will need rapid advice when they suspect a flare. In the 2023 benchmarking survey, 41% (3535/8523) of patients contacted a specialist IBD nurse for advice, yet 32% (1707/5257) waited more than two working days for a response (https://ibduk.org/reports/ibd-uk-2023-benchmarking-survey-results). Updated flare management standards highlight the importance of rapid access to expert advice, ideally on the same day and no later than the end of the next working day. Protocols should be available to support such advice in both primary and secondary care.

While corticosteroid prescribing remains common, it may not always represent the most appropriate intervention. The standards promote the development and adherence to evidence-based protocols in secondary and primary care, ongoing audit and stewardship to minimise inappropriate use. Clear contact details for the IBD team should be available to all patients, ensuring continued specialist support where this is needed following initial contact.

Domain 5: Surgery

The updated surgery Standards (box 5) continue to emphasise the importance of comprehensive information and support for patients before and after surgery, delivered through coordinated multidisciplinary care. Surgical management should be undertaken by teams with specialist expertise in IBD to ensure optimal outcomes.

Box 5. Surgery Standards.

Statement 5.1: Patients should have access to coordinated surgical and medical clinical expertise preoperatively and postoperatively, which should include regular combined or parallel clinics with a specialist colorectal surgeon (paediatric colorectal surgeon where appropriate), IBD gastroenterologist and clinical nurse specialist.

Statement 5.2: Elective IBD surgery should be performed by a colorectal surgeon with expertise in IBD (paediatric colorectal surgeon where appropriate) who is a core member of the IBD team in a unit where such operations are undertaken regularly.

Statement 5.3: In the absence of relevant local expertise in complex IBD, paediatric patients or adult patients requiring complex surgery should be referred to a specialist unit.

Statement 5.4: Patients with IBD being considered for surgery should be provided with information in a format and language they can easily understand to support decision-making and informed consent. All patients should have access to stoma nurse support preoperatively where indicated. Psychological support should be available where needed.

Statement 5.5: Prior to elective surgery, a full assessment and optimisation of medical treatment, physical condition and nutritional status should be undertaken to minimise the risk of complications and aid postoperative recovery.

Statement 5.6: Patients should be counselled about minimally invasive options (eg, laparoscopic, robotic surgery), when appropriate, in accordance with clinical guidelines.

Statement 5.7: Surgery for IBD should incorporate a pathway for enhanced recovery when appropriate.

Statement 5.8: Patients and parents/carers should be provided with information about postoperative care before discharge, including wound care. Stoma care and psychological support should be available where needed.

Statement 5.9: Planned surgery for IBD should be performed within 4 weeks from the decision to operate or as soon as the patient’s clinical status has been optimised.

Statement 5.10: Patient safety incidents should be recorded and actioned, including delays in surgical treatment for patients with IBD on an elective surgery list that subsequently results in emergency surgery due to a disease complication.

Shared decision-making is essential to high-quality care, and patients should have access to parallel or combined clinics that enable joint consultations with medical and surgical specialists. However, 2023 benchmarking data reveal that only 27% (34/126) of hospitals offer regular joint clinics, while 52% (66/126) provide ad hoc joint appointments, leaving the remainder of patients without this support.¹² Where local expertise in complex surgical IBD management is lacking, timely referral to specialist centres is essential for both adults and children.

The surgery standards also emphasise preoperative optimisation and timely access to surgery, which should be minimally invasive where appropriate. Robotic surgery has been incorporated into statement 5.6, and statement 5.7 introduces enhanced recovery after surgery protocols to improve postoperative outcomes. In line with National Confidential Enquiry into Patient Outcome and Death (NCEPOD) recommendations,²² elective surgeries should be performed within 4 weeks of the decision to operate or within 4 weeks after the patient’s clinical status is optimised. Given the superior outcomes associated with elective procedures, delays that result in emergency surgery must be recorded and addressed as patient safety incidents, as mandated in the 2023 NCEPOD report.²² An audit should be undertaken to monitor patient safety.

Domain 6: Inpatient care

The updated inpatient care Standards (box 6) underscore the importance of timely, comprehensive and holistic specialist assessment at the point of hospital admission. In 2023 benchmarking, 22% (3400/15 296) of patients reported an IBD-related hospital admission within the previous 2 years (https://ibduk.org/reports/ibd-uk-2023-benchmarking-survey-results), highlighting the need for consistent inpatient pathways to minimise inequalities in care provision.

Box 6. Inpatient care Standards.

Statement 6.1: Inpatients should be seen by a specialist gastroenterologist or colorectal surgeon within 24 hours of admission and transferred to a specialist ward area within 2 days of admission to ensure regular specialist review.

Statement 6.2: Where ensuite rooms are not available, inpatients with IBD should have a minimum of one easily accessible toilet per three beds on a ward.

Statement 6.3: For inpatients admitted with an IBD flare, initial management should be guided by an agreed local protocol.

Statement 6.4: Children and adults admitted as inpatients with acute severe colitis should have daily review by appropriate specialists.

Statement 6.5: On admission to hospital, nutritional status, mental health, pain and extraintestinal manifestations should be assessed using validated tools, where available. Pathways should be in place for onward referral as appropriate.

Statement 6.6: All inpatients with IBD should have access to an IBD nurse specialist who should be notified of all IBD admissions.

Statement 6.7: Pharmacists reviewing inpatients with IBD should have access to an expert IBD pharmacist for advice. A locally agreed policy should be in place for the perioperative management of IBD medicines.

Statement 6.8: Before discharge, patients should be provided with clear, written information about follow-up care, including a telephone number/email address to contact in the event of clinical queries. Patients should be counselled on discharge regarding new medications and appliances.

Prior to surgical admission, patients should receive clear, accessible information about operative options in suitable media to allow informed decision-making and consent. Post-discharge, surgical patients should be provided with information about wound care and have access to ongoing support from stoma nurses and psychology services where required. Information about postoperative medication should be communicated effectively, supported by the involvement of pharmacists with IBD expertise.

Statements detailing specific treatment protocols have been removed from the 2026 Standards as they are covered in IBD treatment guidelines¹⁸ and replaced with statement 6.3 stressing the importance of adherence to evidence-based guidelines on management of emergency in-patients. Hospitals admitting patients with IBD must be able to ensure transfer to a medical or surgical ward with appropriate IBD expertise within 24 hours of admission, where they should have daily expert review, particularly for acute severe colitis. Close liaison between medical IBD specialists and surgeons is particularly important. Practical considerations, including adequate and easy access to toilets, remain a priority for patient dignity and comfort. Unfortunately, only 40% (1282/3238) of patients see a specialist IBD nurse during admission (https://ibduk.org/reports/ibd-uk-2023-benchmarking-survey-results), representing a significant gap in specialist nursing provision.

Pharmacists play a central role in optimal inpatient care supporting perioperative medications management and providing counselling on medications at discharge. Clear communication channels must be established, so patients know who and how to contact for advice following discharge, ensuring continuity of care and reducing the risk of complications.

Domain 7: Ongoing care and monitoring

The updated ongoing care and management Standards (box 7) address all aspects of long-term follow-up, reinforcing the principle of personalised care. As in 2019, a PCP is recommended for all patients, to support self-management, improve integration between primary and secondary care and ensure individualised support of IBD management.

Box 7. Ongoing care and monitoring Standards.

Statement 7.1: A personalised care plan (PCP) agreed by the patient, communicated and accessible to primary and secondary care should be in place for every patient with IBD.

Statement 7.2: Patients should be supported in self-management, as appropriate, through referral or personalised signposting to education, groups and support.

Statement 7.3: Clear shared care protocols should be in place for the monitoring, prescribing and supply of IBD medicines across primary and secondary care settings with a clear pathway for advice or referral back to the specialist team where necessary.

Statement 7.4: Arrangements should be in place to monitor and review patients started on nutritional therapies and supplements to assess their ongoing needs across primary and secondary care.

Statement 7.5: Patients should understand how, when and who to contact in the event of clinical queries about their IBD and/or their medicines.

Statement 7.6: Full consideration should be given to identifying and managing symptoms of most importance to the patient, for example, pain, fatigue, comorbidities, extraintestinal manifestations, continence and sexual function. Patients with IBD should be investigated and managed using a multidisciplinary approach including pharmacological, non-pharmacological, dietary and psychological interventions where appropriate.

Statement 7.7: Any reviews and changes of treatment in primary or secondary care should be clearly recorded and communicated to all relevant parties including GPs, patients and parents/carers within 2 days.

Statement 7.8: Review frequency should be agreed with the patient on an ongoing basis, including access to supported self-management and patient-initiated follow-up (PIFU) pathways.

Statement 7.9: A mechanism should be in place to ensure that colorectal cancer (CRC) surveillance is carried out in line with national guidance and that patients and parent/carers are aware of the process and their individual risk factors for CRC.

New additions strengthen holistic care. Statement 7.4 highlights the need to monitor and review all forms of nutritional therapy once initiated, in the same way as should be undertaken for drug therapy, across both primary and secondary care. Statement 7.5 emphasises the importance of clearly signposted routes for patients to access advice or information about their condition or treatment. Statement 7.6 expands the scope of assessment to include extraintestinal manifestations, continence and sexual function, alongside pain and fatigue. These issues are often overlooked in routine consultations.

The standards also stress proactive planning of outpatient reviews, endoscopic surveillance and the use of PIFU pathways to enhance flexibility and patient empowerment. Collectively, these standards aim to deliver comprehensive, patient-centred care that addresses clinical, psychological and lifestyle needs throughout the disease course.

Discussion

The 2026 IBD UK Standards directly address persistent variation in patient experience and service delivery identified through two rounds of national benchmarking generating over 26 000 patient responses and metrics from 154 IBD services, plus extensive stakeholder engagement.^{10 12 13} By integrating this evidence, the 2026 Standards aim to tackle systemic deficiencies and promote equitable, high-quality care within the context of evolving NHS priorities.14,17

Objective and comprehensive standards are essential to define what excellence looks like in IBD care. Continuous cycles of service assessment and targeted QI are critical, given the dynamic nature of disease mechanism understanding, therapeutic innovation and healthcare delivery.^{18 23} PREMs remain central to this process, as lived experience should be the ultimate measure of success and a driver for codesigned QI initiatives.²⁴ The UK’s 20-year history of national audit and standard-setting in IBD provides a strong foundation for this work (figure 1), and the 2026 IBD UK Standards represent the next step in that journey.

Persistent disparities in IBD care revealed by benchmarking^{10 12 13} highlight an ongoing need for standards that are embedded within a QI framework in order to drive improvements in care quality.^{3 10} In under-resourced health services, it is important to have powerful incentives and, where possible, inexpensive solutions to drive this work, both at a national and local level. Local services can leverage resources such as business case templates, available on the IBD UK website (https://ibduk.org/resources-for-ibd-services), and benefit from enhanced patient involvement to codesign service improvement. Importantly, many standards, particularly those related to communication and information provision, both areas of high patient priority, require minimal financial investment yet are associated with significant improvements in patient outcomes and experiences.^{10 13}

The UK nations’ strategic NHS policy documents promote integrated, partnership working with community-based care, digital transformation through wide-scale collection of patient-reported outcome and experience measures, unified digital health records and registries to facilitate continuous audit and service development, as well as patient empowerment in order to reduce care inequalities.14,17 These initiatives align with 2026 IBD Standards on timely access, coordinated primary and secondary care management, communication, personalised care and monitoring. The national strategic policies also emphasise proactive, prevention-focused care, workforce development and investment in innovation, supporting several principles within the IBD Standards such as multidisciplinary collaborative working, adoption of robotics and enhanced recovery protocols in surgery as well as promotion of self-management.

Other national strategies, including the NHS England Quality Strategy (https://www.england.nhs.uk/long-read/quality-strategy-december-2024/) GIRFT (https://gettingitrightfirsttime.co.uk), NHS RightCare (https://www.england.nhs.uk/publication/hannahs-story-inflammatory-bowel-disease) and public health campaigns (https://www.whatsupwithmygut.org.uk),²⁵ further endorse patient engagement, data-driven QI and partnership working that are central to the IBD Standards. In Scotland, the Centre for Sustainable Delivery has established an IBD workstream focused on driving sustainable improvement through innovation, collaboration and clinical leadership. In Wales, the IBD Implementation Network works to reduce variation, inefficiency and inequality in care. The All Wales IBD Report 2025 assessed services against the 2019 Standards and outlined a 10-year transformation plan aligned with the National Clinical Framework, with progress tracked via the Values in Health programme. The 2026 IBD Standards also align with National Institute for Health and Care Excellence quality standard 2015, which contains four statements covering time to specialist assessment, MDT support, surgery and monitoring of drug treatment.²⁶ Internationally, the European Crohn’s and Colitis Organisation (ECCO) has launched the Quality of Care Project (E-Quality; https://ecco-ibd.eu/science/e-quality). In the 2019 ECCO position paper, there are 111 quality standards,⁵ and while notably these standards are predominantly clinician devised and assessed, the E-Quality project demonstrates a global momentum towards standardised, patient-centred care.

The 2023 benchmarking survey identified information, communication, empowerment and well-being support as priorities for patients.¹³ The 2026 Standards embed these principles across all seven domains and position the PCP as a cornerstone of holistic, shared, long-term management. Despite this, only 6.7% (976/14 617) of patients reported having a PCP in 2023 benchmarking,¹² highlighting both limited implementation and poor understanding of how an effective PCP should be developed and what it should encompass. A PCP should be highly individualised, reflecting patient-specific need and preferences. It may be broad or focused on discrete issues, and in time-limited consultations could be developed iteratively as a living document.

To support wider adoption of PCPs in clinical practice, box 8 summarises key components that may be incorporated. These components are illustrative and aspirational rather than exhaustive, and it is neither expected nor appropriate for every PCP to include all elements. This flexibility reflects the principle that IBD services should operate as MDTs, ensuring the most relevant professional provides input on the aspect of the PCP that aligns with the patient’s needs at any given time. The PCP should focus on what matters most to the patient and may include symptom monitoring, flare management strategies, nutritional and psychological support and pathways to re-access specialist care when needed. An example may be documenting a flare plan to empower a patient to self-manage and reduce unnecessary consultations or admissions. Similarly, patients with stable disease or following definitive surgery may not require regular secondary care review, but clear criteria for re-entry or re-referral to specialist services could be defined in the PCP. Once established, the PCP should be reviewed regularly, updated when needed and integrated into routine care. While paper versions may be acceptable, digital formats can enable real-time access and editing by patients, primary care teams and the IBD MDT. Linking PCPs to electronic healthcare records and clinic letters can enhance continuity, shared decision-making and proactive planning tailored to individual and changing need. Further development, implementation and formal evaluation of PCPs are needed to determine their impact on patient experience, clinical outcomes and service efficiency.

Box 8. Components that can form a personalised care plan (PCP).

Self-management examples:

• Education about inflammatory bowel disease (IBD) symptom/flare recognition/side effect awareness.

• When and how to undertake a faecal calprotectin check.

• When to self-increase mesalazine dosage in ulcerative colitis.

• Initiation of topical therapies during a flare of proctitis or left-sided colitis.

• How to contact the IBD team for advice and when to attend hospital as an emergency.

• Engagement in hobbies, sleep, regular physical activities and social activities including spending time with family and friends.

Secondary care examples:

• Timing of monitoring bloods and next colonoscopic disease assessment and/or surveillance.

• When to undertake therapeutic drug monitoring.

• Criteria for therapy dose escalation or switch to a new treatment and which choice(s).

• Referral to psychological services or peer support.

• Outpatient follow-up interval and options for patient-initiated follow-up.

• Proactive treatment alterations, planning and vaccination in anticipation of travel or relocation.

Primary care examples:

• Shared-care agreements.

• Commencement of medications on repeat prescription.

• Initiation of therapies, for example, folic acid, B12 loading and maintenance injections.

• When to prescribe steroids or topical therapies and how to inform the IBD team of actions.

The PCP may be documented as an action plan in clinic letters or could be a living document within the electronic patient care record accessed by the patient, secondary and primary care. The availability of a PCP is intended to support patients in understanding their IBD and for proactive management, which may avoid unnecessary disease flares, primary care or Accident and Emergency (A&E) attendance, early flare recognition and intervention. It can support the multidisciplinary team and on-call teams with how to manage anticipated flares or disease complications should they happen.

Conclusions

The 2026 IBD Standards have directly responded to national variation in care identified by benchmarking. They provide a contemporary aspirational framework to drive consistent, high-quality, personalised care across the UK and are a valuable measure of service quality. They aim to reduce care inequality and improve experience and outcomes through support for patient-centred shared decision-making, PCP, national benchmarking, promotion of key targets, service development, patient involvement and QI.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.