Long Term Thinking: Crohn’s & Colitis
As part of our series on improving care for people with long-term health conditions, Dods Impact and AbbVie explore how we can reach the Crohn’s disease and Colitis patients ‘going missing’ from the system
In the UK, over half a million people are living with inflammatory bowel diseases such as Crohn’s disease and ulcerative colitis. These debilitating conditions can have a profound impact on quality of life with a range of long-term symptoms and complications.
During Covid, people living with these conditions have had a challenging time. The regular checks and consultations that they rely upon have been disrupted, impacting on their mental and physical health.
“The pandemic has introduced an unexpected level of uncertainty and disruption to the lives of people living with Crohn’s disease and ulcerative colitis,” Burcu Borysik from Crohn’s & Colitis UK tells us. “People living with these conditions faced considerable uncertainty on many fronts, including risk level, shielding, and vaccine access. This uncertainty left many people feeling confused, anxious, and frustrated.”
Worryingly, a new report commissioned and funded by biopharmaceutical company AbbVie suggests that the pandemic has also led to a big fall in the number of referrals to hospital gastroenterology departments that are a critical part of initial diagnosis.
Experts are now warning that this fall has resulted in patients with serious health conditions effectively “going missing” from the system. Finding ways to reconnect those patients to healthcare pathways must now be a critical part of the NHS recovery.
Baroness Young of Old Scone says too many people are not getting the simple tests that could help to provide a diagnosis of IBD so that they can get prompt treatment. “This is bad for people with the condition, costly in terms of increased care needs on the NHS and puts further pressure on already overloaded A&E services,” she says. “These tests need to be mandated across the NHS, not just in a few places, as do standard care pathways for IBD. We know what needs to be done to ensure adequate care for people with IBD, we just need the NHS to adopt agreed standards.”
Belinda Byrne Ph.D., UK Medical Director at AbbVie, explains that finding ways to identify missing patients by accelerating diagnosis is vital, not just for them but for the NHS as a whole.
“Speeding up diagnosis benefits patients by identifying early treatment that can slow disease progression, but it is also good news for the NHS,” she tells us. “Research has shown that 41% of people with IBD visit A&E at least once before diagnosis. This places an enormous strain on frontline healthcare providers. Earlier diagnosis and more effective treatments make a real difference as does creating pathways that have the potential to improve how patients self-manage their condition.”
Delayed diagnosis is not a new issue in Crohn’s disease and ulcerative colitis care, with almost one in five people waiting five years to be diagnosed with the condition.
“Even before the pandemic, there were huge delays in diagnosis and treatment for people with Crohn’s disease and ulcerative colitis ,” Borysik tells us. “The pandemic has exacerbated these problems. Lack of access to specialists, medicines, tests, and procedures have led to flares, complications, and poorer mental health for many.”
A new report commissioned by AbbVie, and carried out by research consultancy Carnell Farrar has now quantified the impact of the pandemic on those with inflammatory bowel diseases.
New research shows there are over half a million people in the UK living with Crohn’s disease and ulcerative colitis, nearly double that previously estimated
This analysis confirms that the pandemic has led to further delays to initial diagnosis. During the first year of the pandemic, first outpatient attendances for gastroenterology plummeted by 19%. Outpatient appointments for those in the process of diagnosis dropped by over half.
There is also concern that delays in diagnosis mean that many people are simply unaware that they are living with the condition and are not accessing care. “New research shows that there are over half a million people in the UK living with Crohn’s disease and ulcerative colitis, nearly double that previously estimated,” Borysik tells us. “Currently, and in part due to the underestimated prevalence, the health service is not equipped to manage the care”
As we have emerged from lockdown, the level of referrals and outpatient appointments has started to recover. However, experts are calling for providers to look beyond traditional approaches, warning that even achieving pre-pandemic levels will not come close to clearing the backlog caused by those missed appointments.
“Crohn’s disease and ulcerative colitis are hugely debilitating conditions,” Byrne tells us. “We need to invest in creating new tools, treatments, and technologies that those living with IBD can use to self-manage their condition more effectively.”
Effective self-management in the community is not just better for patients. It could ultimately save the NHS money and free up capacity in other areas of work. The Carnell Farrar research found that improving community management and length of stay for inflammatory bowel conditions could result in 9000 fewer unplanned hospital admissions and save up to 29,000 bed days each year.
Key patient groups such as Crohn's and Colitis UK have also stated that finding new ways of dealing with the backlog in IBD care must now be a central element of the NHS recovery. This could avoid worsening of conditions, reduce pressure on overstretched A&E departments, and cut costs to the taxpayer. Most importantly, it could improve the lives of the half a million Britons who are living with Crohn’s and Colitis.
How Remote Care is Improving Outcomes for IBD Patients in Surrey
Inflammatory bowel disease (IBD) is a lifelong condition with patients experiencing flare-ups that vary in frequency and severity. Traditional treatment involves routine periodical reviews. For patients who are stable these have limited benefits. The model also leads to increased waiting times and reduces resources available to patients whose condition is deteriorating. This leads to poorer patient outcomes and preventable hospital admissions.
A new model of delivery at East Surrey Hospital is now looking at how to focus face-to-face services on those patients who need them the most. Building on earlier shifts to email and phone consultations, the hospital has developed a portal called Patients Know Best (PKB), which allows patients to record symptoms and communicate with the IBD team remotely. It enables access to timely advice and clinical review, prompting escalation where necessary.
Patients who are stable but have concerns can be reassured without the need for a face-to-face appointment. This has reduced waiting times, releasing appointment slots, and led to a fall in the number of emergency attendances.
The shift has had positive impacts for both patients and the hospital. Patient access to specialist care at time of a flare-up has reduced from 6 weeks to 1 week. The redesign of the service saves around 650 patient hospital attendances each year, including 80 inpatient admissions.
Of 35 patients surveyed, 68% said having remote access to care had a positive impact on their IBD, 77% said it helped them feel more confident in managing their own health, with 57% stating it had improved their quality of life.
This case study is not connected to AbbVie in any way
This article and the Carnall Farrar report has been commissioned and funded by AbbVie. This article is intended for the general public.
Date of Preparation: October 2022 Job No: UK-ABBV-220310
Get the inside track on what MPs and Peers are talking about. Sign up to The House's morning email for the latest insight and reaction from Parliamentarians, policy-makers and organisations.