It is almost six years since Crohn's & Colitis UK launched its nursing programme to help shape the future of inflammatory bowel disease (IBD) care.
I have been an IBD nurse for more than 20 years and I know what a difference having a dedicated IBD nurse makes to people living with Crohn's disease and ulcerative colitis. IBD nurses are responsible for leading services, managing patients and providing continuity of care. We are a key part of any IBD team and people with Crohn's and colitis tell us our services are a lifeline.
There are more than half a million people in the UK living with IBD, the two main forms of which are Crohn's disease and ulcerative colitis. These conditions impact their daily lives and mental health.
State of IBD care
Ultimately, we believe that everyone living with Crohn's or colitis should expect to have access to a suitably qualified IBD nurse to receive high-quality IBD care. Sadly, the IBD UK report, The State of IBD Care in the UK, published in December 2024, showed that is not always the case. In fact, the report found the quality of care reported by people with IBD has declined over the past five years.
While there are pockets of good practice, no IBD service in the UK meets the IBD standards for care or staffing. It is sad to read that when patients are asked about how we measure up to the IBD standards, which exist to guide the delivery of high-quality and personalised care, we are not managing to do that, and a big part of that problem is workforce.
‘One of the biggest issues … is that many conditions present with similar lower gastrointestinal symptoms. This means it can be challenging for clinicians to identify which tests and investigations are needed’
We all want to deliver the best care for our patients, so it can feel a bit like it's all hands on deck – but we just do not have the manpower to do it. We need enough nurses, but we also need investment in other key members of the IBD team, including pharmacists, dieticians and psychologists to help us deliver those services. I also believe tackling the admin shortfall in the NHS might help free up some of our time as nurses.
Not only that, we have to let people know what we are doing and make sure we communicate clearly with patients. I help train nurses to work in IBD services because I am passionate about helping people feel empowered to do their jobs. Admission avoidance, early detection and early intervention can all be delivered by an IBD nurse advice line if it's supported effectively.
We now have 37 Crohn's & Colitis UK IBD nurse specialists working in hospitals up and down the country. Meanwhile, the charity is working hard, lobbying the government for investment in the whole IBD workforce to make sure we have the resources we need to be able to deliver the services we want to our patients.
The IBD UK report's findings were featured on ITV News at the start of December to mark Crohn's and Colitis Awareness Week. I spoke about the frustrations of working in an overstretched service and the need for investment in IBD care as part of the Labour government's NHS reforms. In response, an NHS spokesperson said: ‘We know how important timely diagnosis and access to expert, personalised care is for people living with Crohn's disease and ulcerative colitis, as these conditions can have a major impact on their everyday lives.
‘While NHS staff are diagnosing and treating more people than ever before for inflammatory bowel disease, we are also working with patient charities to improve assessments and bring down wait times.
‘Local health systems are also looking at how they can provide more personalised care to patients in the community, helping to reduce the need for hospital admissions by supporting people to manage their conditions, and live a better quality of life.’
As well as looking at the services we provide in secondary care, we know we can play a key role for patients in primary care. It is taking too long for people to be diagnosed with Crohn's and colitis and that has to change, as we know that earlier diagnosis leads to better outcomes.
A co-ordinated approach in primary care
Crohn's & Colitis UK has worked hard to combat the stigma associated with many of the symptoms of inflammatory bowel disease, encouraging people to pay attention to their toilet habits and seek help if something isn't right. However, we also know that even when a patient goes to see their GP, getting a diagnosis for gut problems can be far from simple.
One of the biggest issues, in primary care in particular, is that many conditions present with similar lower gastrointestinal (GI) symptoms. This means it can be challenging for clinicians to identify which tests and investigations are needed. Someone may have Crohn's, colitis, coeliac disease or irritable bowel syndrome, for example. Much of the available support and guidance is condition-specific, which means joining the dots can be a challenge.
A co-ordinated approach is essential. Crohn's & Colitis UK recognised that unmet need and set about developing a solution with help from a broad group of healthcare professionals, other patient organisations and people with lived experience. The result was the National Primary Care Diagnostic Pathway for lower GI symptoms. It is a concise and informative tool designed to empower both patients and their healthcare practitioners. The website (www.whatsupwithmygut.org.uk) features two diagnostic pathways to be used in primary care – one for children and one for adults.
It is there to support busy GPs who are making important decisions about secondary care referrals, while working under time constraints. There is guidance for healthcare professionals on the screening and testing of lower GI symptoms across the UK. There is also a patient toolkit to make the process of diagnosis less overwhelming for those with symptoms. The whole idea is to make patients feel empowered, by giving them information on what to discuss with clinicians and which tests are available.
Patients are the experts at dealing with the reality of their conditions every day. That's why lived experience was such a key part of this project. People who live with lower GI conditions were involved in developing and testing the pathway, to help improve patient understanding and experience of pre-diagnosis in primary and community care settings.
This initiative has now been endorsed by the Royal College of General Practitioners (RCGP), the Royal College of Nursing (RCN), the Royal Pharmaceutical Society (RPS) and the British Society of Gastroenterology (BSG). The paediatric pathway has also been endorsed by the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN).
It is a hugely exciting step forward in bridging that gap between primary and secondary care. We really hope this pathway will increase early diagnosis and improve patients' diagnostic journeys, too. Being part of this at its inception has been fantastic, and the sooner we can make sure that patients are on the right path to the treatment they need the better.
We hope this project will make a difference to thousands of people every year, and this is just the start.