- What are the 2026 IBD Standards?
The 2026 IBD Standards set out what high-quality care should look like at every point of a patient’s journey. They are an update of the previous set of Standards, published by the IBD UK Alliance in 2019. For the most part, old standards have been edited to bring them in line with new evidence and guidance. However, a small number of standards have also been deleted, and there are also six brand new standards.
We know the Standards may not always match the care you receive. As a charity, we're working towards making the IBD Standards a reality for everyone, regardless of their age or where they live in the UK. The updated Standards give us a clear picture of what IBD services need to be aiming for. As part of the IBD UK Alliance, we’ll now be working harder than ever to support IBD services in meeting those aims.
- How will you be helping IBD services to meet the 2026 IBD Standards?
Crohn’s & Colitis UK are a member of the IBD UK Alliance, the organisation who created and published the 2026 IBD Standards. With the Standards updated, it is now the Alliance’s priority to create a hub of resources for IBD services, aimed at helping them to reach meet the Standards. All resources will be matched directly to at least one statement from the Standards. Resources will include practical tools to be used by healthcare professionals, case studies of best practice, and signposting to existing information, research, e-learning, podcasts, webinars and beyond. Data from the 2023 Benchmarking will also allow the Alliance to focus on areas of priority for patients and services across the UK.
- How were the IBD Standards updated?
All 59 standards from the 2019 IBD Standards were reviewed by a working group consisting of: four people with lived experience, five consultant gastroenterologists, one paediatric gastroenterologist, two colorectal surgeons, one radiologist, four IBD Nurse Specialists, two pharmacists, two dietitians, and a clinical psychologist.
Each of the 2019 standards were assessed as either 1. No change necessary; 2. Minor amendment; 3. Major amendment; 4. Delete. Where amendments, deletion or new standards were required, drafts were written and refined by the working group. A wider consultation was then undertaken of IBD healthcare professionals. The consultation was open for six weeks over May to July 2025, generating 47 responses. Professional backgrounds were as follows: Eleven gastroenterologists, ten IBD nurse specialists, eight dietitians, four colorectal surgeons, three clinical psychologists, two pharmacists, two radiologists, one paediatric gastroenterologist, one paediatrician, one rheumatologist, one dermatologist and three responders did not specify their professional background.
In addition to targeting responses from HCPs, a 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.
- What are the main differences between the 2019 Standards and the 2026 Standards?
There are 60 Standards in 2026, compared to 59 in 2019. Six standards remain unchanged from 2019, with 46 amended, and six entirely new Standards added. There were also seven standards deleted from the 2019 version. Reasons for deletion were predominantly due to repetition within other standards or due to the statement referring to an aspect of clinical guidance already covered by the British Society of Gastroenterology guidelines for the management of IBD. Amendments will have taken place to refine wording and align the standards with contemporary best practice and NHS priorities.
The newly added standards are as follows:
- 1.2 All patients should have a named specialist(s) responsible for their care.
- 5.7 Surgery for IBD should incorporate a pathway for enhanced recovery when appropriate.
- 5.10 Patient safety incidents should be recorded and actioned, including delays in surgical treatment for patients with IBD on an elective surgery list, which subsequently result in emergency surgery due to a disease complication.
- 6.3 For inpatients admitted with an IBD flare, initial management should be guided by an agreed local protocol.
- 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.
- 7.5 Patients should understand how, when and who to contact in the event of clinical queries about their IBD and/or their medicines.
- How do the IBD Standards relate to the IBD UK Benchmarking?
The IBD Standards and the IBD UK Benchmarking work together as two core pillars of the work the IBD UK Alliance do to improve standards of IBD care across the UK. While the IBD Standards provide the framework of what optimal IBD care should look like, the IBD UK Benchmarking measures how well IBD services are meeting the Standards. This is achieved through two surveys: the Patient Survey and the Service Self-Assessment. For both, questions are designed to align with the Standards.
While the Standards inform the Benchmarking surveys, results from the 2023 surveys also helped to inform key themes emphasised throughout the 2026 IBD Standards update. In particular, we knew from the 2023 Patient Survey that timely access, effective communication, personalised care, and overall patient experience were aspects of care most valued by patients. We have therefore ensured to highlight these aspects as key themes throughout the Standards, across every stage of the care pathway, from pre-diagnosis to ongoing management.
This relationship is also part of the reason a complete rewrite of the IBD Standards was deemed inappropriate. By maintaining the core of the 2019 IBD Standards – which was used as the framework behind the 2019 and 2023 Benchmarking rounds – we can ensure that results of future Benchmarking remain comparable to past findings.
You can view local results of the 2023 Benchmarking here, and a report on the overall national picture here.
- How will the 2026 IBD Standards help people living with Crohn’s or Colitis?
With the IBD Standards updated to align with contemporary best practice, IBD services across the UK have a timely framework to evaluate themselves against. Combined with the results from the 2023 IBD Benchmarking, services can clearly identify areas for improvement and respond appropriately. Likewise, it allows patients to measure the reality of their own care against the optimal care laid out by the Standards, supporting self-advocacy at appointments.
An updated set of Standards and Benchmarking data also provides the IBD UK Alliance with a strong foundation to work on targeted quality improvement resources, helping IBD services to raise standards, with a well-informed understanding of where services currently are and where they need to get to. By helping IBD services, we can improve the patient experience.
- How can I see if my service is meeting the IBD Standards?
By using our Local Service Reports Map, you can find your local service. There, you will find their Results Overview Report, which includes information from both the Service Survey and the IBD Patient Survey. The Overview report follows the patient journey from first symptoms to treatment and ongoing care, mirroring the IBD Standards. The key in the report shows which results are from the Service Survey and which are from the IBD Patient Survey. This provides a high-level view of how they are performing against the Standards.
Not every service completed the 2023 Service Self-Assessment, but where enough patients still completed the IBD Patient Survey for that service, they will still have a Results Overview Report, containing relevant Patient Survey data.
Please note that results from these surveys were measured against the 2019 IBD Standards, not the updated Standards.
- My IBD service isn’t meeting the 2026 IBD Standards. What can I do?
We know that not every healthcare team will be meeting all of the IBD Standards at this time. The IBD Standards are aspirational, not a legal requirement. This means that they are about how we would like things to be and not necessarily how they are right now. Your healthcare team should be working towards offering this level of care to all of their patients.
We all have the right to good healthcare. We also have the right to complain if we don’t think we’ve received this. You may want to make a complaint if:
- You’re unhappy with the service you’ve received
- There’s been an unreasonable delay in treatments or investigations
- There’s been a misdiagnosis
- A healthcare professional has made a serious error
- A healthcare professional has acted inappropriately
There’s detailed information on how to make a complaint and what to include in Crohn’s & Colitis UK’s how to get a diagnosis.