The New IBD Standards – A Nurse’s Perspective
Interview with Lisa Younge, IBD Nurse Specialist,
The Royal London Hospital
‘IBD Nurses have been around for about 20 years but initially there was little formal structure to their working practice,’ explains Lisa. ‘As a result, IBD nursing roles grew organically and varied greatly from centre to centre in terms of scope and quality. The Royal College of Physicians IBD Audit in 2006 highlighted a number of differences in IBD care across the UK, including demonstrating that centres which had an IBD Nurse did better in areas including patient access and education than those who were not. This disparity in care led to the development of the first IBD Standards in 2009 which were then updated in 2013.
‘Through these guidelines and along with a supportive narrative promoted by other key stakeholders such as Crohn’s & Colitis UK, progress has undoubtedly been made since then. The specifications of the numbers of IBD Nurses needed per head of population was recommended in 2009 and, although lower than we would have liked, undoubtedly helped to pushed up the standard of IBD services. Significantly, the 2009 and 2013 Standards provided evidence that nurses could take to hospital management to show that introducing or improving the IBD Nurse service provided better outcomes for patients.
‘Today health trusts are generally doing a lot better in providing a defined IBD patient management structure. MDTs, which provide dietary, psychological, pharmaceutical and surgical input all in one place, are now the norm in IBD whilst most IBD centres have helplines or some other form of emergency contact for the patient.
‘However, standards still vary greatly across health trusts particularly in regard to the IBD Nurse service. Unfortunately, there are still some trusts where the service is managed on a ‘lone working’ basis – where one nurse does everything and there is no contingency plan should he or she go sick or be on leave.
‘As a result, within the IBD community there has been a lot of work going on to try to make the invisible visible, that is to quantify the work carried out by the IBD Nurse including telephone work, face to face appointments, patient education, prescribing, and counselling.
‘The 2019 IBD Standards acknowledge the breadth and complexity of the role carried out by IBD Nurses and makes recommendations which hopefully will support them to build an improved patient service. Key to this is the revised increase from 1.5 to 2.5 IBD nurses per 250,000 population which, although aspirational, at least sets out a standard to take to management. A benchmarking tool allows IBD services to measure themselves against an evidence-based, quantifiable, standard which will hopefully result in consistent and co-ordinated care across the UK.
‘Other recommendations include a focus on personalised and holistic care including support for self-management, diet, pain and fatigue. Defined metrics include a patient being seen within four weeks of referral, a personalised treatment plan within 48 hours and a steroid audit. There is emphasis also on the need for better communication between primary and secondary care, particularly around flare management. Recommendations suggest a 48-hour time frame for exchanging patient developments.
‘Although we completely support these new recommendations, it is inevitable that many of the tasks will fall under the remit of the IBD Nurse. However, what these latest Standards do very well is to clarify exactly why these recommendations should be introduced in terms of better patient outcomes, value for money etc. They therefore reinforce the need for more IBD Nurses within a service.
‘The 2019 IBD Standards also recognise how quickly some things have changed in IBD since 2013. For example, new technologies which allow easier patient interactions via helplines, emails, Skype or apps, along with new and advanced treatments, incorporating these into the recommendations.
‘Ultimately the real aim of everyone working in the IBD arena is to move us on from where we are now to a position where a patient can expect consistent, high quality, well managed and personalised care from pre-diagnosis to lifelong treatment wherever they are based in the UK. We believe that the 2019 IBD Standards are fundamental towards achieving this goal.’