When the tide comes in, what will the next waves bring?

When the tide comes in, what will the next waves bring?

The focus of future care and the decisions that IBD services and CCGs make about where to allocate resources and the types of innovation required are crucial

After the first month of the COVID-19 pandemic in the UK, consultation with IBD services in different parts of the country reveals that they are at very different points on the journey. However, what appears to be a consistent theme is the continued redeployment of IBD nurses and the lack of resource to create safe surgical hubs areas to continue with urgent and important but nonbenign IBD surgery. Certainly, within surgery, the focus and diversion of resources has been very cancer centric. IBD is not currently featuring on the political agenda, in spite of the fact that we know that the lifetime costs for treating and caring for Crohn’s and Colitis are estimated at £900 million per year, which is comparable to those of heart disease or cancer (based on 2006 prevalence data).1

We also know that delayed diagnosis increases the likelihood of surgery or more expensive treatments and if left untreated can cause more serious complications, which might require emergency surgery. It is also 2-3 times more costly to treat patients with a relapse than to treat them when they are in remission (20x more for those patients that are hospitalised).2

The pandemic trajectory from NHSE below starkly highlights that if politicians do not support CCGs, Trusts and charities supporting the NHS with resources, the NHS will experience the impact of interrupted care on chronic conditions in the second and third waves of COVID-19. Ian Arnott, Chair of BSG IBD Section from NHS Lothian highlights:

“[we] know this will lead to more people with IBD having more significant flares and may well result in increased admissions to hospital”

Ian Arnott, Chair of BSG IBD Section from NHS Lothian

A great strength that the pandemic has brought to the fore is the pivotal role of volunteers, communities and charities working together to support access to healthcare and keeping people well by for example, delivering prescriptions, groceries etc. Keeping people living with Crohn’s and Colitis well and out of hospital also relies on other support services being preserved for people with IBD, such as homecare to access sub cutaneous treatment options. The role of NICE in expediting more sub cutaneous drug treatment options becoming available cannot be underestimated here.

One of the challenges Ian Arnott in Scotland observes is that currently IBD units are not allowed to engage new homecare services. For Phil Smith from the Royal Liverpool University Hospital, it is vital that the NHS and politicians support these homecare companies and CCGs to keep people well and out of hospital:

“..if units want to switch to meds that avoid coming to hospital such as subcutaneous infliximab, (which costs more and is off label), the government needs to reassure CCGs to support these as "COVID" costs”

Phil Smith, from the Royal Liverpool University Hospital

Another key area for IBD, as Richard Pollock from St George’s University Hospital denotes, is a pathway mechanism that has teeth, mandating Trusts to review suspected IBD referrals in a timely manner and likewise GPs to refer without delay. At the Barts Health NHS Trust, Gareth Parkes describes how they have used the ‘Electronic Referral Pathway Advice & Guidance' platform as a mechanism whereby GP’s communicate cases where there is clear concern about new diagnosis of IBD:

“We are using an initial telephone consultation and planning of investigations has helped. We are being allowed to use Faecal Calprotectin which also makes triaging those urgent cases much more straightforward” - Gareth Parkes, from Barts Health NHS Trust

Richard Pollock feels that agreeing priorities for catch-up GP referrals and setting criteria is key:

“We are already aware delayed diagnosis is a problem but given clinic push-back during pandemic this will be accentuated further.” - Richard Pollock, from St George’s University Hospital

"We also need to think about access to advice for our patients with diagnosed IBD when the IBD teams are depleted and redeployed. We don't want primary care to jump straight to using oral steroids; having flare pathways is a key part of this too."

Kevin Barrett, Chair of the Primary Care Society for Gastroenterology and Clinical Director of The Grand Union PCN

The sustained impact of IBD Nurses and Gastroenterologists etc. being redeployed not only affects the current care of patients, as telephone helplines remain closed and nurses are not available to change simple things like prescriptions for homecare drugs, but in the long term healthcare professionals will be depleted after concentrating on delivering frontline clinical services.

The BSG under the leadership of Cathryn Edwards, Alastair Mckinlay and the COVID-19 Emergency Executive have produced an excellent series of important documents for service recovery planning to consider planning in the short, medium, and long term.

Similarly under the leadership of Justin Davies, Peter Sagar, Ciaran Walsh and Nicola Fearnhead, the ACPGBI have produced clear IBD guidance for surgery.

However, public health data and pandemic predictions suggest that for IBD patients the challenges of making difficult choices and decisions about their behaviour and assessment of risk in relation to their lifestyles will continue as the UK stabilises and recovers from the first wave of the pandemic. This requires anyone running a telephone helplines for patients to be adept and competent in navigating shared decision making conversations, as the virus will continue to remain in the system and IBD patients and their carers will need to make choices about what they can and can’t do in the coming months. This is an important consideration for future NHS resource allocation as health charities like Crohn’s & Colitis UK who have seen a fourfold increase in helpline calls during the pandemic are ideally placed to collaborate with and support the NHS in helping patients in shared decision making conversations. IBD patients have the added complication of moving into high risk categories very quickly, as Gareth Parkes explains:

“It is very easy for a patient to end up in the high risk shielded group – Any flare will do this. A single mother of 5 told me that there was no way she could give up her job in social care in order to stay at home to shield her 21 year daughter who has active Crohn’s that we have just started a biologic on. It is a Hobson’s choice!”

Gareth Parkes, from Barts Health NHS Trust

This is where the focus of future care and the decisions that IBD services and CCGs make about where to allocate resources and the types of innovation that may be required are pivotal, such as developing:

  • community based infusions services and regional hubs with clean, safe areas for infusions
  • more telemedicine services
  • enhanced digital technologies across primary/secondary care and patient/service interfaces for patient tracking to plan care and future rapid access for patients

As precious charity resources diminish, a strategic alliance and approach by IBD, bowel and gut charities may become essential. Pooling resources and merging services and offers may make the difference between important programmes of work such as research, driving up quality of care and innovating new models of care continuing or not. If charities take siloed and territorial approaches to their work which has been at the heart of facilitating the transformation of care for IBD patients, the road to recovery will be long and slow.

So for all IBD services, professional bodies and charities supporting people living with Crohn’s and Colitis, when the tide comes in, for the next wave and beyond, it’s crucial to be open to new ways of working, to allow time for ‘sense making’. Planning an intensive phase of recovery and evaluation, alongside dealing with waiting lists and triaging critical care is crucial.

The coronavirus pandemic has stimulated rapid changes in the ways leaders and individuals in organisation are behaving. Whilst this evolution was borne out of necessity, embedding these entrepreneurial and agile behaviours will be key, so that the ‘agencies’ are continually reflective and dynamic, listening to and working with patients and carers. In the words of Van Gogh we need to build a future together where we do not quench inspiration and imagination or become a slave of our model.

Acknowledgements : With huge thanks to Cathryn Edwards, Phil Smith, Chris Lamb, Stuart Bloom, Omar Fiaz, Ian Arnott, Kevin Barrett and ALL members of the BSG IBD Section and the HSD Team at Crohn’s and Colitis UK for your support & encouragement.


1Lucas C, Bodger K. Economic burden of inflammatory bowel disease: a UK perspective. Expert Review of Pharmacoeconomics & Outcomes Research, 2006;6(4):471‐82, and Cummings J F R, Keshav S, Travis SPL. The management of Crohns disease. BMJ 2008;336:1062‐6. Cited in Royal College of Physicians (2014) National audit report of inflammatory bowel disease service provision: adult national report. UK IBD audit. London: RCP, 2014.

2Bassi A, Dodd S, Williamson P, Bodger K. Cost of illness of Inflammatory Bowel Disease in the UK: a single centre retrospective study. Gut, 2004;53(10):1471-8