The two main types of inflammatory bowel disease (IBD) are Crohn’s disease and ulcerative colitis. IBD is a lifelong condition that causes inflammation and ulceration in the bowels, affecting 500,0001,2 people in the UK. Symptoms include urgent and frequent diarrhoea, sometimes with blood and mucus, extreme fatigue, weight loss and anaemia. IBD can also cause extra-intestinal symptoms in the joints, skin, eyes and liver and the disease can have a significant impact on relationships, work and education.3
IBD is a relapsing-remitting condition, meaning patients can have periods where their symptoms are largely under control and periods of flare-ups where symptoms are often active and debilitating. Around 50% of patients experience at least one relapse a year,3 and it costs the NHS two to three times more to treat patients in a flare compared to those in remission.3 Potentially life-threatening complications can occur during severe flares.
The RCGP and Crohn’s & Colitis UK IBD Spotlight Project was launched in 2017,5 with the aim to increase understanding of IBD amongst primary care clinicians, leading to quicker diagnosis. The project supports primary care clinicians to increase their awareness of Crohn’s and colitis, carry out initial investigations and refer patients appropriately to secondary care with suspected Crohn’s disease or ulcerative colitis. In its third year, the project is now focusing on flare management and how GPs can support their patients to manage their condition in the long-term.
When patients have a suspected flare, they often visit their GP and IBD teams often advise patients to organise blood and stool tests through their primary care clinician. Despite this, 52% primary care clinicians are less than confident or not confident in managing flares according to the Spotlight Project survey of 525 GPs and GP trainees carried out in April 2017. To build confidence and support GPs with flare management, a project group of patients, GPs, IBD nurse specialists and gastroenterologists was set up to co-create pathways based on NICE, BNF, and European Crohn’s and Colitis Organisation (ECCO) guidance.
Flare Pathways for both Crohn’s disease and ulcerative colitis were produced, and they have been endorsed by the British Society for Gastroenterology, the Primary Care Society for Gastroenterology and the Royal College of General Practitioners. They are available to view or download on the RCGP and Crohn’s & Colitis UK IBD Spotlight Project Toolkit.
The Flare Pathways provide guidance for assessment of flare severity using established criteria, warnings when patients may be becoming septic (patients with inflammatory bowel disease, particularly those taking disease modifying drugs, are at increased risk),6 when to seek input from secondary care, investigations to carry out in primary care, initial medication changes or escalation, when to assess response to treatment, and when to revert to their baseline medication regime again. Steroids have a place in the management of flares, but they must be used at an appropriate dose for an appropriate length of time. Overuse of steroids is common and carries with it increased risks of surgical complications and increased mortality.7
What is good care for inflammatory bowel disease?
Alongside the creation of the Flare Pathways, 2019 has seen the launch of new UK IBD Standards, which set out what good care looks like at all stages of the patient journey, from first symptoms to ongoing care. Of the 59 statements in the IBD Standards, 22 have an impact on primary care and the relationship between primary and secondary care, and one of the seven sections of the patient journey is on flare management.
This section outlines that clear pathways and protocols must be used within flare management and explicitly references the importance of guidance for primary care. In addition, patients should be supported to self-manage with advice on early intervention and that there should be rapid access and advice to patients and GPs through an IBD nurse specialist.
In areas of the UK with good access to IBD nurse specialists, and/or clear flare-management pathways, patients and GPs can be empowered to recognise and manage flares of IBD. The Flare Pathways are intended to assist GPs in supporting their patients with established, uncomplicated IBD, promote coordinated working between primary and secondary care and help IBD services work towards meeting the IBD Standards.
Although many patients with IBD receive all the support they need from their IBD teams, GPs need to be aware of the wider impact of IBD. Oral contraception may be less reliable in women with IBD who have malabsorption due to severe small bowel disease or resection, or who have vomiting or severe diarrhoea for more than 24 hours, and is therefore UKMEC Category 2.8
Patients on immunosuppressive therapy (e.g. adults and children on corticosteroids (>20mg prednisolone per day or 1mg/kg/day in children under 20kg) for more than 14 days or adults on non-biological oral immune modulating drugs e.g. methotrexate >25mg per week, azathioprine >3.0mg/kg/day or 6-mercaptopurine >1.5mg/kg/day) should not receive live vaccinations (e.g. Fluenz Tetra, shingles or yellow fever),9 therefore the documentation of drugs issued by hospital teams should be documented in the GP prescribing record. The 2019 IBD Standards requires that changes to relevant medication is communicated to primary care within 48 hours.
In addition to flare management, the IBD Spotlight Project Toolkit provides advice on diagnosis, nutrition, psychological support, anaemia, fatigue, fertility, immunisation, and contraception for patients with IBD. It also signposts to patient organisations including Crohns & Colitis UK and CICRA for further information on all aspects of the disease and support and resources for healthcare professionals and patients.
The Spotlight Project Regional IBD Champions5 are available throughout the UK to promote the Flare Pathways and provide educational sessions on diagnosis, flare management and supporting patients.
Dr Kevin Barrett is a GP, Clinical Champion for the Royal College of GPs and Crohn’s and Colitis UK IBD Spotlight Project. He is also Chair of the Primary Care Society for Gastroenterology. Please contact firstname.lastname@example.org if you would like to find out more and visit the IBD Spotlight Project Toolkit for support and advice.
Hamilton B, Heerasing N, Hendy PF, et al. PTU-010 Prevalence and phenotype of IBD across primary and secondary care: implications for colorectal cancer surveillance. Gut 2018;67:A67-A.
Jones G, Lyons M, Plevris N, et al. DOP87 Multi-parameter datasets are required to identify the true prevalence of IBD: The Lothian IBD Registry (LIBDR). Journal of Crohn’s and Colitis 2019;13:S082-S3.
Mowat C, Cole A, Windsor A, Ahmad T, Arnott I, Driscoll R et al. Guidelines for the management of inflammatory bowel disease in adults. Gut. 60. 571-607. 10.1136/gut.2010.224154
Ghosh N, Premchand PA UK cost of care model for inflammatory bowel disease Frontline Gastroenterology 2015;6:169-174