Consensus standards of healthcare for adults and children with inflammatory bowel disease in the UK

Self Cite

ObjectiveTo determine the challenges in diagnosis, monitoring, support provision in the management of inflammatory bowel disease (IBD) patients and explore the adaptations of IBD services.MethodsInternet-based survey by invitation of IBD services across the UK from 8 to 14 April 2020.ResultsRespondents from 125 IBD services completed the survey. The number of whole-time equivalent gastroenterologists and IBD nurses providing elective outpatient care decreased significantly between baseline (median 4, IQR 4–7.5 and median 3, IQR 2–4) to the point of survey (median 2, IQR 1–4.8 and median 2, IQR 1–3) in the 6-week period following the onset of the COVID-19 pandemic (p<0.001 for both comparisons). Almost all (94%; 112/119) services reported an increase in IBD helpline activity. Face-to-face clinics were substituted for telephone consultation by 86% and video consultation by 11% of services. A variation in the provision of laboratory faecal calprotectin testing was noted with 27% of services reporting no access to faecal calprotectin, and a further 32% reduced access. There was also significant curtailment of IBD-specific endoscopy and elective surgery.ConclusionsIBD services in the UK have implemented several adaptive strategies in order to continue to provide safe and high-quality care for patients. National Health Service organisations will need to consider the impact of these changes in current service delivery models and staffing levels when planning exit strategies for post-pandemic IBD care. Careful planning to manage the increased workload and to maintain IBD services is essential to ensure patient safety.

Section: What This Study Addsmentioning

confidence: 99%

Organisational changes and challenges for inflammatory bowel disease services in the UK during the COVID-19 pandemic

Kennedy

Hansen

Younge

et al. 2020

Self Cite

“…Across all four UK countries, and within both adult and paediatric services, there is a need to continue to work towards meeting the recommended minimum number of 2.5 full time IBD CNSs per 250 000 population, with a maximum of 500 patients per full time nurse. 1 Feedback from both our survey and within the IBD community itself has been positive toward the impact of the 'More IBD Nurses, better care' campaign, with use of online resources developed to assist in business case planning and of the Facebook peer support and networking opportunities. The Crohn's & Colitis UK 'Find an IBD Nurse Map' resource demonstrates good coverage nationally, and continues to be accessed regularly, both by patients and IBD services, averaging just over 2500 unique views per quarter.…”

Section: Professional Mattersmentioning

confidence: 93%

“…Cost and lack of time are often cited by nurses as barriers to undertaking study and this needs to be addressed if we are to develop a workforce which offers comparable standards of care to patients with IBD wherever they live in the UK, as recommended by the 2019 IBD Standards. 1 While recognised as of great importance and benefit to both individuals living with Crohn's and Colitis, and IBD services, advice lines have been identified by many IBD CNSs as a source of stress and anxiety due to 'unseen workload' and increasing numbers of contact. [12][13][14] Explanations for the increasing stress levels associated with advice line provision include lack of dedicated time within job plans and clarity as to the purpose of the service, resulting in potentially unrealistic expectations about what the advice line can deliver.…”

Section: Professional Mattersmentioning

confidence: 99%

“…An estimated 500 000 people in the UK live with inflammatory bowel diseases (IBD) with numbers affected rising. 1 Often diagnosed younger in age, these conditions are lifelong, relapsing and remitting and cost the National Health Service (NHS) in the region of £1 billion annually. service, where their role includes provision of costeffective patient education, disease management and therapy monitoring, patient support, continuity of care, audit and rapid access for advice and review during disease flares.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Specialist inflammatory bowel disease nursing in the UK: current situation and future proofing

Younge

Mason

Kapasi

2020

Self Cite

ObjectiveTo determine the impact to date of the ongoing Crohn’s & Colitis UK inflammatory bowel disease (IBD) clinical nurse specialists (CNS) campaign.MethodsA survey-based design was used. 2 questionnaires were sent to the UK IBD nursing community and promoted via nursing and clinical networks. Respondents were asked to provide data at both an individual and trust level about their nursing services.Results394 IBD CNS posts were identified across the UK, with a 32% increase in posts since the start of the campaign. 27% felt the campaign had been influential in securing new posts. Greater numbers of posts were reported in England when compared with the devolved nations. Most services remain below the UK standards recommendation of 2.5 IBD CNS per 250 000 patient population. Cross site working was reported in 59% of services. 45% of respondents were non-medical prescribers, with 13% educated to MSc level. High levels of stress were reported by IBD CNS associated with managing advice line services.ConclusionsCrohn’s & Colitis UK’s ‘More IBD Nurses–Better Care’ campaign has contributed to the numbers of CNS posts in IBD continuing to rise, but they remain lower than the recommended standard of 2.5 IBD CNS per 250 000. Educational and career pathways are not clearly defined, and aspects of the role such as advice line provision contribute to stress within the workforce. The ongoing aims of the charity campaign hope to address these issues by improving access to formal education pathways with peer support for IBD specialist nurses, and advice line training, in addition to supporting trusts and services throughout the UK to reduce the workforce deficit with effective business cases.

“…A multidisciplinary approach is currently the gold standard in providing holistic care with most patients requiring regular outpatient follow-up and long-term medication to prevent disease flares and associated complications 3. Continuity of care is vital in managing IBD, and we can learn from studies of the process of transition from paediatric to adult care.…”

Section: Introductionmentioning

confidence: 99%

Quality of care in adult patients with inflammatory bowel disease transferring between healthcare providers: multicentre audit

Ahmad

Ayubi

Clough

et al. 2020

BackgroundInflammatory bowel disease (IBD) predominantly affects young adults at critical socioeconomic periods of their lives. There are no studies examining the process of transfer of care for adult patients with IBD changing healthcare providers. Our aims were to assess the quality of referral information provided when patients with an established IBD diagnosis transfer care between heathcare providers and to assess the impact of referral quality on patient outcome.MethodsRetrospective data pertaining to IBD transfer of care referrals were collected from 16 hospitals across London over a 2-month period. Data were collected on patient demographics, source and content of referral and cross-referenced with an established transfer of care checklist. Patient outcome within the 6 months following transfer was also documented.Results154 cases were identified, over half of which transferred due to patient relocation. Details included in transfer letters were in many cases incomplete. In over 70% of cases, the letter came from primary care, including when a tertiary opinion was sought. Although referrals from primary care contained fewer patient data points, there was no association with poor patient outcomes at 6 months.ConclusionThis is the first study examining the quality of transfer of care in adult patients with IBD. We highlighted a significant and underreported issue and found that the majority of referrals were led by primary care. Though the inclusion in the referral of fewer data points was not associated with poor outcomes, we highlighted an area where gastroenterologists might take more responsibility to provide smooth and robust transfer of care.