New report on how to improve Inflammatory Bowel Disease (IBD) care

Baroness Young of Old Scone | AbbVie

6 min read25 October Partner content

Half a million people across the UK, of whom I am one, live day in day out with Inflammatory Bowel Disease (IBD). IBD is a term used to describe chronic inflammatory conditions of the gastrointestinal tract, including Crohn's disease and ulcerative colitis.¹

This article has been commissioned and funded by AbbVie. Baroness Young has authored this article, with editorial support from AbbVie, but has not been paid for doing so.

This article is intended for UK parliamentarians and policy makers.

When I was first admitted to hospital 20 years ago as an emergency and was diagnosed with ulcerative colitis, one of the IBD conditions, I entered into a previously hidden world of people, dealing with what can be an extremely debilitating and sometimes life threatening condition. I met fellow sufferers who were bravely coping with symptoms like pain, rectal bleeding, fatigue, disastrous diarrhoea, nausea and vomiting on a chronic basis. Some had to face gut surgery, many were unable to work or study properly and the impacts of IBD for most are not just physical but also impact on mental health, social relationships and self esteem.

IBD costs the NHS around £900m a year.¹ Many people are diagnosed in their late teens to early twenties, and lifetime costs are comparable to diabetes or cancer,² yet it is not a national priority. Even though IBD is a serious condition, many patients are not promptly diagnosed and end up in A and E in crisis.¹ It should not be right that people have to struggle with these challenging symptoms for on average over a year before they get a diagnosis and access to treatment. Even once diagnosed, there are barriers to accessing the multi-disciplinary care that they require to ensure their condition is managed and doesn’t deteriorate. There is ample research evidence to catalogue these issues and the disparity of care across the country.¹

The IBD community, healthcare professionals, patient organisations and involved pharmaceutical companies, have worked together for a number of years to define a clear vision for appropriate standards for IBD care, most recently through the publication of the IBD UK 2019 Standards.³ But more needs to be done to ensure that such standards are implemented effectively, enabling people living with IBD to access the care they need and deserve no matter where they live.

Ever since I was diagnosed 20 years ago, I have been keen to help the IBD community to secure improvements across the IBD care pathway and to make sure the standards, which are accepted as the right ones, are effectively implemented. That’s why in the spring, I hosted an event to launch a report, commissioned and funded by AbbVie “Securing the consistent implementation of IBD Standards in the UK” - the full report can be read here. The report brought together the IBD patient community, healthcare professionals and policy makers to deliver expert insights on the barriers to good care and to suggest strategies for overcoming them to ensure consistent and effective implementation of the IBD Standards.

So, what needs to change?

The approach to diagnosis should be standardized

There are now simple steps towards swift diagnosis. In alignment to the report, NHS England should develop a best practice pathway for the diagnosis of IBD, to be implemented across all Primary Care Networks and Integrated Care Systems. We need to get the N back into NHS and local departure from best practice must become unacceptable.

Patient awareness should be improved, supporting those in need of diagnosis to ask for help.

Often people who are living with these challenging symptoms but have not received a formal diagnosis can sometimes be sent away with an imprecise and incorrect labelling of “irritable bowel syndrome”^.4 People don’t know what they should be entitled to in terms of tests and investigations to identify IBD. As outlined within the report, NHS England should support campaigns to increase patient awareness of IBD symptoms and what help patients should ask for.

People living with IBD should be empowered to share decision-making in their own care.

People living with IBD do so 24/7 and are key managers for their own care. The report highlights that Integrated Care Systems (ICSs) should adopt and implement the IBD model of care to include patient involvement in education and support, fostering self management and reducing pressure on clinical resources. A key player in this is the IBD specialist nurse who can support the patient in self care, advise at times of crisis and act as the important link between the patient and the NHS. Many health economies don’t have the recommended level of specialist nurse support even though that improves the efficiency of use of NHS specialist resources.1 In 2021, only 14% of Multidisciplinary Teams (MDTs) had enough IBD nurse specialists to meet the recommended IBD standards of 2.5 IBD nurses per 250,000 population.1

Best practice and innovative approaches to care should be shared and implemented more widely, allowing patients nationwide to benefit from expert knowledge and experience

It is wasteful for each local health system to reinvent the wheel. The IBD community can work closely with Integrated Care Systems to bring attention to new approaches and innovative models of care which improve patient access and outcomes, as well as reduce burdens on the NHS system.

The IBD community, including people living with the condition and many committed and knowledgeable health professionals and patient organisations, are already taking the lead to drive progress towards implementation of high quality, patient-centred, swift care nationwide. But more must be done to ensure that this hard work is backed up by policy makers and decision makers throughout the health system, nationally and locally. IBD is a big, expensive, serious condition. We know what needs to be done to transform the care landscape for the half million people living with the condition, to critically enhance the quality of their lives and reduce the burdens on the NHS. Let’s do it.

Job number: UK-IMM-240159

Date of preparation: October 2024

IBD UK (2021) Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change. Available at: https://s3.eu-west-2.amazonaws.com/sr-crohns-craft/documents/CROJ8096-IBD-National-Report-WEB-210427-2.pdf [Accessed August 2024]
Harrogate and District NHS FT (2016) Specialist Inflammatory Bowel Disease service created. Available at: https://www.hdft.nhs.uk/news/ibdservice/ [Accessed August 2024].
IBD UK (2019) IBD Standards. IBD UK. Available at: https://ibduk.org/ibd-standards [Accessed August 2024].
Card TR, Siffledeen J, Fleming KM (2014). Are IBD patients more likely to have a prior diagnosis of irritable bowel syndrome? Report of a case-control study in the General Practice Research Database. United European Gastroenterology Journal. 2: 505–12.
AbbVie (2024) Securing the consistent implementation of IBD standards in the UK. Available at: https://online.flippingbook.com/view/869006487/#zoom=true [Accessed August 2024].

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