A new report, Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change, has exposed the stark reality of Inflammatory Bowel Disease (IBD) care across the four nations.

The report was produced by IBD UK (which is chaired by Crohn’s and Colitis UK) and represents all the major stakeholders in Inflammatory Bowel Disease.

IBD is often described as a “hidden” condition, which the general population know little about. However, the report has revealed that there are more than half a million people living with IBD in the UK; that’s one in every 133 people.

Despite the vast number of people suffering with IBD, services have been built around a much lower prevalence figure of around 300,000 (the figure previously measured). This means that IBD services are now under a huge amount of strain and are unable to meet the IBD Standards set out in 2019.

Before Covid hit, there were already major gaps in IBD care. These gaps have now widened, which has impacted diagnoses and services, including investigations and surgery. Delays in care will hugely contribute to the cost of IBD, which is rapidly becoming comparable to that of heart disease, diabetes and cancer.

Unless something changes quickly, this will only worsen. To make the system change, IBD UK are calling for governments across the UK to make IBD an NHS priority and communicate a clear strategy of how they are going to improve care over the next five years.

Improvements to diagnosis and information

Crohn’s and Colitis are complex, fluctuating and debilitating conditions. An early diagnosis is vital for patients to receive proper treatment and support, and avoid flares and emergency care. However, of the 10,222 people who responded to the survey, a quarter (26%) of respondents said they waited over a year for their diagnosis, 41% visited A&E at least once before diagnosis, and 12% visited three times.

These statistics are shocking and should not be the norm for people with IBD. Delays in diagnosis and treatment not only have a detrimental impact on the physical and mental health of the patient, but are also extremely costly to the NHS. As the report found, the cost of managing someone during a flare up is up to six times higher than when they are in remission.

A lack of understanding about the condition, among the general public and healthcare professionals, is thought to contribute to these delays. It appears there is a real gap in awareness and understanding of the condition and its impact, with 79% of respondents saying they felt the public had little to no understanding of IBD.

For this reason, IBD UK are calling for a public health campaign to raise awareness. The campaign hopes to provide widely available information and better support to quash any stigmas about the condition and improve public awareness.

Rachel Ainley, Health Services Manager at Crohn’s & Colitis UK said: “People with Crohn’s and Colitis are waiting too long for diagnosis. To change this, we need a public health campaign to raise awareness of the conditions and training for community healthcare professionals, such as GPs, pharmacists and nurses, so everyone can recognise the symptoms and refer appropriately, including consistent use of faecal calprotectin tests. The government must provide the resources services needed to investigate and diagnose suspected IBD quickly, so people do not have to face unacceptable delays to treatment and care.”

Personalised care and support for self-management

The report found some excellent examples of care, but unfortunately, these are few and far between. IBD UK wants to make sure that care across the UK is safe, consistent, high-quality and personalised, no matter where you live.

Currently, care is often reactive and focused on medication. However, Crohn’s and Colitis affect more than just your gut. These conditions can cause serious fatigue; swollen joints; eye, skin and liver problems; and importantly, can take a serious toll on your mental health. If these issues are not addressed, patients can be left struggling with these debilitating symptoms, making it difficult to manage and live well with their condition.

Despite these symptoms occurring in many patients with IBD, during follow-up medical appointments 29% were not asked about pain, 48% were not asked about fatigue and 60% were not asked about mental health.

To improve the current state of care, IBD UK suggest each patient has a personalised care plan from diagnosis, based on a holistic needs assessment, detailing specific multidisciplinary support and flare management. Patients must also receive information and support in order to deal with their condition, as a third (32%) said they were not offered any information about their condition when diagnosed.

Healthcare professionals must ensure that IBD care involves those with the condition, considering all aspects (including race, gender and ethnicity) on an individual basis.

Faster access to specialist care

Crohn’s and Colitis sufferers need fast access to professional advice, particularly when having a flare. Fast treatment can reduce the effects of a flare and/or ensure the worst effects are avoided. A lack of access to support and advice will lead to more emergency admissions, which are both costly and distressing for the patient.

However, too often this doesn’t happen, as the findings from the survey reveal that almost three quarters (72%) of admissions to hospital were an emergency. For this reason, all IBD services should ensure that everyone with Crohn’s or Colitis has a plan in place for when they have a flare and has access to an advice line with a quick response time.

Commissioners and managers should also ensure that rapid access clinics and prompt access to investigations are in place. This is important for ensuring that surgery takes place when it needs to and that any delays are avoided, as currently, 22% of patients are waiting more than 18 weeks for their planned IBD surgery.

Effective multidisciplinary team working

Currently, people with Crohn’s or Colitis don’t have access to the full range of specialist care they need. Because the conditions have such wide-ranging symptoms and impacts, patients will need a wide range of expertise in order to get the care they need.

This makes care coordination difficult, with less than half (48%) of respondents saying they received care coordinated with other specialist services. Patients need support from psychologists, dieticians and pharmacists in order to meet the IBD Standards. However, only 7% of IBD services reported having enough dieticians and just 2% reported having enough psychologists.

Anisha Gangotra, who lives with Ulcerative Colitis, said: “I’ve needed to access dietitians, mental health professionals and rheumatologists linked to my IBD but I’ve struggled when services haven’t been joined-up or easy to access. I’ve rarely been asked about my mental health or fatigue, although these have been hugely debilitating. Over the years, I’ve played the middleman, managing my care between my GP and consultants.”

The report found that one of the biggest gaps is specialist IBD nurses. IBD nurse specialists are central to high-quality care as part of the complete multidisciplinary team. For this reason, IBD UK are calling for fully resourced and educated teams to deliver personalised care plans. This includes creating training programmes, so that everyone with Crohn’s and Colitis has access to an IBD nurse specialist and where you live is not a barrier to getting the care you need.

Governments across the UK must step-up and make IBD an NHS priority

This coalition of experts in IBD care, wants political decision makers across the four nations to ensure that IBD is recognised as an NHS priority and to communicate a clear strategy of how they are going to improve Crohn's and Colitis care over the next five years.

Given the cost and impact, and an ageing population, this is a timebomb for the NHS and a condition that needs to be recognised and prioritised.