ObjectiveSymptoms and clinical course during inflammatory bowel disease (IBD) vary among individuals. Personalised care is therefore essential to effective management, delivered by a strong patient-centred multidisciplinary team, working within a well-designed service. This study aimed to fully rewrite the UK Standards for the healthcare of adults and children with IBD, and to develop an IBD Service Benchmarking Tool to support current and future personalised care models.DesignLed by IBD UK, a national multidisciplinary alliance of patients and nominated representatives from all major stakeholders in IBD care, Standards requirements were defined by survey data collated from 689 patients and 151 healthcare professionals. Standards were drafted and refined over three rounds of modified electronic-Delphi.ResultsConsensus was achieved for 59 Standards covering seven clinical domains; (1) design and delivery of the multidisciplinary IBD service; (2) prediagnostic referral pathways, protocols and timeframes; (3) holistic care of the newly diagnosed patient; (4) flare management to support patient empowerment, self-management and access to specialists where required; (5) surgery including appropriate expertise, preoperative information, psychological support and postoperative care; (6) inpatient medical care delivery (7) and ongoing long-term care in the outpatient department and primary care setting including shared care. Using these patient-centred Standards and informed by the IBD Quality Improvement Project (IBDQIP), this paper presents a national benchmarking framework.ConclusionsThe Standards and Benchmarking Tool provide a framework for healthcare providers and patients to rate the quality of their service. This will recognise excellent care, and promote quality improvement, audit and service development in IBD.

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.

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Programmes focussing on wellbeing and rehabilitation have been a powerful response to supporting those diagnosed with a long term condition. This project is unique in combining three organisations across a wide network, to work together in addressing the emerging gap in provision.Collaboration between three organisations presented interesting cultural differences. At the same time, this project was introducing a cultural shirt from a problem solving, paternalistic and compliance focus of care towards one of empowerment and self-determination. A Learning and development (L&D) programme was developed bespoke to the hospices and aimed to:Increase staff knowledge and understanding of Self-Management Support (SMS) and Health Behaviour Change (HBC);Explain why SMS and Health Behaviour Change are important to current and future work of the hospices and how they link to the holistic needs assessment;Provide staff with opportunities to develop skills and approaches, enabling a person-centred approach to day-to-day practice;Increase staff confidence and skills to support people to self-manage;50 delegates attended the programme and evaluation was achieved through a longitudinal questionnaire to measure shift in confidence and attitude. Semi structured interviews and evaluation sheets explored delegate’s qualitative thoughts about the training and further education needs.Results showed:The L&D programme was rated positivelyThere was a shift in professionals beliefs towards the positive benefits of SMS and HBCL&D provided new skills and confidence in using tools to facilitate SMS and HBC in clinical practiceA bespoke assessment tool was developed by the teamA patient reported outcome measure was agreed based on the Macmillan 9 outcomesThe L&D programme is now an integral part of the education provided within the hospices.

With this model we stratified the cohort into high and low risk groups, which corresponded to an overall positive predictive value (PPV) 31%, and negative predictive value (NPV) 96% by year 5 of follow-up (p<0.0001). To test this stratification criteria, the model was then applied to the external validation cohort and accurately predicted risk groups in this set with PPV 29%, NPV 93% by year 5 of follow-up (p<0.001). The final validated model was embedded in a web-based tool to calculate and illustrate patient-specific risk (figure 1). Conclusions We have designed and externally validated www. UC-CaRE.uk, a personalised AN risk prediction webtool to facilitate shared decision-making over the management of LGD.