Recent research has shown that there are over half a million people in the UK living with Inflammatory Bowel Disease – of which the two main forms are Crohn’s and Colitis.1
A new report from IBD UK – a coalition of leading health specialists in Crohn’s and Colitis care, including Crohn’s & Colitis UK,17 professional organisations and Royal Colleges – reveals a UK-wide picture of Inflammatory Bowel Disease (IBD) care which was already stark prior to the Covid-19 pandemic.
‘Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change’2 shows the results of the most comprehensive assessment of UK care ever undertaken. We look at the key findings and offer advice for community nurses and practice nurses.
Be aware of the symptoms
The report showed there is a lack of public understanding of IBD, meaning people can struggle to get a diagnosis. Lifetime costs for IBD are comparable to heart disease and cancer, yet it is not as well-known or understood.3 The main symptoms that a community nurse should be aware of are:
- Diarrhoea, sometimes with blood, mucus and pus.
- Cramping pains in the abdomen. These can be severe and often occur before passing a stool.
- Fatigue, sometimes the illness itself, from anaemia or possibly due to lack of sleep if someone is regularly waking up with pain or diarrhoea.
- Feeling generally unwell. Some people may feel feverish.
- Weight and appetite loss. Weight loss can be due to inflammation of the gut meaning the body struggles to absorb nutrients from food.
- Mouth ulcers.
By being alert to the full range of symptoms, community nurses can play an important part in putting patients on the path to a diagnosis.
Aim for a faster diagnosis
The report found that it is taking too long for people with IBD to be diagnosed, delaying their treatment and support and resulting in potentially avoidable flares and emergency care. Of over 10,000 people responding to the survey, a quarter (26%) waited over a year for their diagnosis, 41% visited A&E at least once before diagnosis, and 12% visited three times. For everyone with IBD, almost three quarters (72%) of admissions to hospital were an emergency.
This should not be the norm for people with IBD. Not only does this have a human health impact, but it is incredibly costly to the NHS as the report showed that the cost of managing someone in a flare is up to six times higher than when they are in remission. Community nurses can play an important part in getting people diagnosed in a timely way. When people present with symptoms, an early referral could prevent someone needing emergency care. If you suspect someone could have Crohn’s or Colitis, you’d want to do an FBC (Full Blood Count) and CRP (C-reactive protein, which is a measure of inflammation) as a minimum. You can find more information in the RCGP IBD toolkit – a user-friendly guide to IBD for GPs and other primary care professionals.
Jacob is 19 and lives with Crohn’s. His experience of diagnosis is an example of how a lack of awareness can lead to potentially preventable surgery. ‘Over one to two years before I was diagnosed, I went to the GP several times. My diagnosis was sudden and scary. At 4am one morning, I was in terrible pain and couldn’t move an inch. I felt like something inside was going to pop, so an ambulance was called. I had a CT scan which showed that my bowel was perforated and I had contracted sepsis. I needed emergency surgery, which resulted in a stoma being formed to allow my bowel to rest… It had a big impact on my mental health.’
Consider the bigger picture
IBD doesn’t just affect the gut. It can affect almost every part of the body and every aspect of someone’s life: from digestion and joints to energy levels and mental health. IBD is a complex, fluctuating and often debilitating condition requiring multidisciplinary care. The report found that people do not have access to the full range of specialist care they need, with most services falling far short of meeting the 2019 IBD Standards4 recommendations for crucial roles, including IBD nurse specialists, dietitians, and psychologists. Less than half (48%) of people felt their care was coordinated with other specialist services.
The report also found that once diagnosed, care for people with IBD is not proactive and is focused on medication, rather than the wider impact of the conditions. People are often left struggling with severe pain, extreme fatigue, anxiety, and problems outside the gut, with 89% of people reporting they found it hard to cope with having IBD over the previous year. Moreover, only 1 in 10 people (10%) said they were assessed for how they had been coping emotionally. Left unchecked and unchallenged, these effects can have a huge impact on a patient’s quality of life.
Community nurses may be seeing IBD patients for routine blood tests, or for monitoring of other chronic conditions, which can be an important check-in point to understand how a patient is managing their condition and the effects beyond the gut.
Don’t let people with IBD be left behind
Covid-19 has exacerbated issues which were already stark prior to the pandemic, such as delays in diagnosis, long waits for elective care, surgery, and investigations, and, in some cases, reduced access to multi-disciplinary teams due to redeployment of key members of the team. As the Covid-19 backlog is tackled, it is critical that people with IBD are prioritised and not pushed to the back of the queue. The consequences of a failure to do so would be profound for those facing potential life-changing complications.
The report shows that IBD care needs to change, with IBD recognised for the serious and debilitating condition it is. Lisa Younge, IBD Nurse Consultant at St Mark’s Hospital and Project Manager, IBD Nursing at Crohn’s & Colitis UK says: ‘Nurses have a vital role to play when it comes to supporting those living with IBD. Community nurses can be instrumental in helping people with symptoms access diagnosis faster, and help those with the conditions to thrive, not merely survive once a diagnosis is made.’
The report identifies what is going wrong. By taking on board the recommendations above, there is an opportunity to make a big difference. Community and practice nurses can be a catalyst for change.
1. Jones G, Lyons M, Plevris N, et al. (2019). IBD prevalence in Lothian, Scotland, derived by capture recapture methodology. Gut. 68: 1953–1960. 10.1136/gutjnl-2019-318936; Crohn’s & Colitis UK (22 January 2021). Study shows over 50% more people in Wales have Crohn’s or Colitis than previously recognised. www.crohnsandcolitis.org.uk/news/study-shows-over-50-more-people-in-wales-have-crohns-or-colitis-than-previo. Hamilton B, Green H, Heerasing N, et al. (2020). Incidence and prevalence of inflammatory bowel disease in Devon, UK. Frontline Gastroenterology. Online: 24 June. doi:10.1136/flgastro-2019-101369
2. IBD UK, Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change, 2021.
3. Study on lifetime costs of IBD care: Luces C, Bodger K. (2006). Economic burden of inflammatory bowel disease: A UK perspective. Expert Review of Pharmacoeconomics & Outcomes Research. 6: 471–482. doi:10.1586/1473722.214.171.1241. 70% figure taken from IBD UK report.
4. IBD Standards, IBD UK, 2019. <https://ibduk.org/ibd-standards>