Systems leadership in IBD with purpose and intent during the coronavirus pandemic

Systems leadership in IBD with purpose and intent during the coronavirus pandemic

It will be vital in coming weeks, that as a community, we work together to take action on behalf of people living with Crohn’s and Colitis in a number of key areas.

Our IBD Community’s response to the coronavirus pandemic has been both concerted and piecemeal. The British Society of Gastroenterology (BSG) has with some urgency led an effective collaborative effort to develop a risk grid which has empowered patients to understand their personal risk level and take appropriate action. This was then developed into a decision tree by Crohn’s & Colitis UK, as well as a web tool, in conjunction with the IBD Registry, to support patient risk categorisation, identification and subsequent support. The web tool was piloted by Crohn’s & Colitis UK and has now reached over 14,000 people through direct marketing by the charity to more than 72,000 of its supporters.

Strategically, the BSG has worked collectively and at great speed to produce clear guidance on endoscopy which balances risks to both health care professionals and patients. The Royal College of Nursing (RCN) IBD Nurses Network and Crohn’s & Colitis UK have also continued to support the nurse specialists on the frontline. Another positive outcome has been the speed and agility with which some IBD teams have transferred outpatient appointments and MDT meetings to virtual telephone and video clinics, triaging patients with urgent care needs and clearing waiting lists with great efficiency, paving the way for new ways of working in the future.

However, individual patients have been challenged in the conflicting messages they have received from the NHS leaving some more confused and anxious. For some patients, this has been exacerbated by the cancellation of appointments with no alternative virtual support or communication between GPs and hospitals. Patient experience reflects the pressures and dilemmas individual services are facing within a rapidly changing environment in the UK. For example, many IBD nurses across the UK are being rotated to COVID-19 critical care. Not everyone with COVID-19 is ‘outwardly unwell’ and with insufficient testing and PPE available, the onus is on clinicians to treat every patient as a carrier.

Surgeons may be rightly concerned about operating on an already immunocompromised IBD patient as this may make them more vulnerable to COVID-19. At the same time, delaying surgery can increase the risk of life-threatening complications, mortality and disease progression which results in life changing surgery, more extensive surgery or surgical complications.

It will be vital in coming weeks and months that as a community we speak as one voice and work together to take action, on behalf of people living with Crohn’s and Colitis, in a number of key areas:

  • ensuring that IBD teams can continue to deliver urgent, safe, life-saving IBD surgery. It is critical NHS services can follow the example of cancer and support IBD teams to create ’clean’ areas in which urgent surgery can take place safely.
  • supporting IBD teams to maintain an IBD service that can triage patients with urgent care needs and deliver specialist advice to those with uncontrolled or flaring disease. This will reduce avoidable admissions and pressures on other parts of the system. NHS Advicelines (including 111) and the role of IBD specialist nurses remain of critical importance during this pandemic.
  • enabling patients to continue to receive vital drugs treatments. IBD services must be supported to rapidly create cold areas in which patients can continue to receive the vital medicines, like biologics, Vitamin D, iron infusions and parental B12, that keep them well, and are prescribed alternatives such as oral iron treatments where appropriate.
  • increasing access to home faecal calprotectin (FCP) testing. This is important as many hospitals are reducing FCP testing due to pressure on labs and concerns with virus presence in stools.
  • working with NICE to explore what potential exists to expedite access to biologic subcutaneous drug treatments which could reduce the need for attendance at infusion/day clinics and alleviate further pressures on the NHS.
  • calling on the government to suspend prescription charges for people with long-term conditions during COVID-19. We know from the work of the Prescription Charges Coalition, that a third of people with long-term conditions skip collecting their medication because of the cost. This is the time when it is critical for everyone to be taking the medication they need to stay well.

As Chair of IBD UK and Director of Health Services for the national charity for anyone affected by Crohn’s and Colitis, I make no apology for highlighting the impact of the COVID-19 pandemic on our organisation. Crohn’s & Colitis UK has seen a fourfold increase in calls to helplines, live chats and emails from patients with most healthcare professionals referring to the charity website and support for patients. When this is mirrored by an accompanying decrease in charity income, the organisation has had to respond and reconfigure teams at speed to areas of greatest need for patients, alleviating essential pressure on IBD teams.

However, this symbiotic relationship with the NHS of many charities remains ‘hidden’ and vital programmes of work in charities themselves may not survive COVID-19 crisis without recognition from the government that a furlough initiative needs to be accompanied by a ‘stabilisation fund’ if patients are going to be continued to be supported in a practical and holistic way during the pandemic. What is clear for us as an IBD community is that we are and will remain stronger together.

Rukshana Kapasi

Chair, IBD UK