Proud to introduce the IBD Standards

Rukshana Kapasi is Chair of IBD UK, Director of Health Service Development at Crohn's & Colitis UK and Chair of the IBD Registry.

I’m excited and very proud to be writing the first blog as Chair of IBD UK. The launch of the IBD Standards, the IBD Patient Survey and the IBD Benchmarking Tool marks a momentous point in the journey of IBD UK since its inception in 2017 and is testimony to the hard work and dedicated commitment of 17 professional bodies and patient organisations to reach a consensus on ‘what good should look like’ in IBD services.

Quality improvement in Inflammatory Bowel Disease (IBD) is not a new concept and many of you may have participated in the Inflammatory Bowel Disease Quality Improvement Programme, led by the Royal College of Physicians from the first IBD Audit in 20061 which ran until 2016. Yet, we know that despite a plethora of quality measures in IBD, there continues to be variation in practice with few realised improvements2.

So how will the 2019 IBD Standards be different? This time, over 700 patients and 200 healthcare professionals have been involved in shaping the Standards.

A service IBD Benchmarking Tool has been developed based on the IBD Standards, allowing healthcare professionals, and for the first time, patients to capture how well the service is doing against the same Standards. The tool follows the patient journey from referral through to ongoing care and long-term management and all IBD services and patients in the UK will be able to participate in benchmarking their services. Patients will have the opportunity to complete a survey from 8th July 2019 and services will be able to carry out a self-assessment using the tool from 1st October 2019. Patients and carers are the only people who experience the IBD pathway from beginning to end and their perspective on where improvements can be made provide a powerful and unique insight, particularly from a holistic perspective of the impact of IBD on their lives.

Personalised care and shared decision making are essential to effective management of Crohn’s and Colitis. Symptoms experienced by patients and their clinical journey is highly individual as I’m sure you are reminded daily through your work with patients. Certainly, in the UK, the IBD community is just beginning to realise the potential of patients as partners in improving the quality of their care through self-management. More and more apps are entering the market, offering patients the opportunity to input data and be active in their symptom management.

The individual impact of IBD and patient experience of IBD services, together with an increasing focus on personalised care in the NHS3 across the UK, underlines the need for a new quality improvement approach in IBD. We know, for example, from the National Cancer Patient Experience Survey 2017 that this type of approach can lead to key improvements, highlighting the potential benefit of if used to shape future IBD care4.

So, I urge you to read the new 2019 IBD Standards, where you will notice more focus on surgery, primary care, paediatrics and patient empowerment, and sign up your services to participate in the IBD Benchmarking Tool.

Your services will benefit greatly from everyone in your IBD team, and supporting services such as endoscopy units, surgery, dietetics, pharmacy and psychology, promoting this unique opportunity to patients and in participating in the multidisciplinary team tool. Together, we can drive up the quality of IBD services to improve the experience and outcomes for patients.


2 Strohl, M., Gonczi, L., Kurt, Z., Bessissow, T. and Lakatos, P. L. (2018) ‘Quality of Care in Inflammatory Bowel Diseases: What Is the Best Way to Better Outcomes?’ World Journal of Gastroenterology, Vol. 24, No.22, pp 2363–2372

3 See, NHS Long Term Plan, accessed 11th May: https://www.longtermplan.nhs.u... Quality Health, 2017, National Cancer Patient Experience Survey,, Date accessed April 2019