LANDMARK REPORT CALLS FOR URGENT INVESTMENT IN BOWEL DISEASE CARE

Rapid diagnosis, shorter waiting lists, personalised care and emotional support will show half a million living with Crohn’s and Colitis they are not forgotten.

The quality of care reported by people with Inflammatory Bowel Disease (IBD) has declined over the past five years, with major resources needed to help overstretched NHS staff deliver the services they want to people with Crohn’s Disease and Ulcerative Colitis. 

That’s one of the key findings of a major new report which gathers the views of more than 17,000 Crohn’s and Colitis patients and 126 adult hospital IBD services. The State of IBD Care in the UK is published by IBD UK, a partnership of 16 professional bodies, royal colleges and patient organisations, including the charity Crohn’s & Colitis UK.

According to the report, no service in the UK meets the standards for care or staffing, and only one in five has enough IBD nurse specialists – often described as a “lifeline” for patients with Crohn’s and Colitis. 

There are more than half a million people in the United Kingdom living with Inflammatory Bowel Disease, with another 25,000 diagnosed with Crohn’s and Colitis every year. To provide an overall assessment of IBD care, patients were asked how they would rate the quality of their care over the past 12 months. Just over a third of adults (35%) rated their care as ‘fair’ or ‘poor’, a higher proportion than in the last survey in 2019. 

The report also showed that:

• People with IBD experience significant delays at every stage of interaction with the health system. This puts pressure on A&E and leads to avoidable hospital admissions and emergency surgery. 
• Only 1 in 5 (20%) people with IBD agreed that they were asked about their mental health. That’s despite Crohn’s and Colitis being lifelong, unpredictable conditions for which there is no cure. 
• Just under a quarter (24%) of adult respondents reported finding it hard to cope regularly, while 14% reported finding it hard to cope most of the time and 7% all of the time.
• One in seven adults with IBD (14%) reported being diagnosed during an emergency hospital admission.
• Workforce pressures are a huge issue. Less than a quarter of adult IBD services met resourcing recommendations for colorectal surgeons, dieticians, psychologists, IBD nurse specialists and pharmacists. These are critical functions that are required for the delivery of timely, safe and person-centred care.

Marianne Radcliffe, Chief Executive of Crohn’s & Colitis UK, said: 

“Although there are incredible doctors and nurses working in IBD teams across the country, we know from patients that accessing care can be frustrating. And the situation is only getting worse. This report sends a clear message: it’s time to prioritise the needs of people with Crohn’s and Colitis, so they are not left behind. We want to see proper emotional support for people with IBD, and personalised care plans that look at patients as people rather than a collection of symptoms. And, of course, we need shorter waits for diagnosis, treatment and surgery. Change can’t come soon enough for people with Crohn’s and Colitis.”

Mareta Greig from Glasgow, who had life-saving emergency stoma surgery for Ulcerative Colitis in 2017, said:

“I just had to keep going back to A&E all the time because my GP didn’t really understand what was happening. Having to keep going back to tell emergency doctors about your symptoms is distressing and it’s embarrassing. For me it did become life-threatening. That shows delays in access to care can become really dire if things are missed. I had no idea what a stoma was until I woke up with one. But my IBD nurse specialist saved my life – no doubt about it. She made it easy for me to reach her, she saw me as a whole person, and she took me and what was important to me into consideration.”

Nishil Saujani from Leicester, who has been living with Colitis for over 20 years, said:

“I was lucky to have been diagnosed quite quickly, but what has happened over time is that because my symptoms change and it’s all so individual, it can be really hard to get help when you need it. So you get in touch with your nurse or consultant when you’re at your worst, but then by the time you see someone, the flare might have calmed down, so there’s nothing to be done. It’s frustrating. It’s so important to have personalised care and people we can reach out to.”

Lisa Younge, an IBD Nurse Consultant at St Mark’s National Bowel Hospital who helps run the Crohn’s & Colitis UK IBD Nursing Programme, said:

“It's important to emphasise that hospital IBD teams want to deliver a great service, but even though it’s all hands on deck all the time, there just aren’t enough of us. A lot of calculations made about the workforce needed are based on previous knowledge about the size of the IBD population in the UK, which is much bigger than we used to think it was. The feedback from more than 17 thousand people who filled in the survey, saying that access, continuity, and communication are all really important, shows that the job we do is important and investment in the workforce is needed to deliver this.”

To read the full report please click here

The launch of the IBD UK Report: The State of IBD Care in the UK webinar will take place on Zoom on 12th December, 6pm-7.15pm. You can view more details here