Improving Care for Inflammatory Bowel Disease Under Challenging Circumstances

April 14, 2023

Dr Rishi Goel writes about how a HIN innovation grant is helping to improve care for inflammatory bowel disease, and how the new service has been co-designed under challenging circumstances. Rishi is Consultant Gastroenterologist and Kingston Lead for IBD Services.

Approximately half a million people in the UK are living with inflammatory bowel disease (IBD), with numbers rising. The chronic condition has high rates of morbidity, and can lead to poor mobility and a significant need for self-care. It can also prevent people from engaging in usual activities, as well as causing discomfort, pain, anxiety and even depression.

IBD can behave unpredictably and patients may struggle to access care when they need it the most, such as when the disease flares up. This increases the likelihood that patients will go to emergency departments and GPs, rather than specialists, when urgent care is needed. On this basis, the case for improving care for people with IBD is clear.

In 2021 we won a HIN innovation grant for a project to improve access to IBD care. Not only was staff time constrained by the pandemic response, but social distancing rules completely changed the way people access care. Since then, the ongoing staffing crisis and pressure on services have made it very difficult to find the time and space to push the project forward, but have made the case for improving access to care stronger than ever.

Research findings

  • 80 per cent of patients wanted communication via digital means
  • 75 per cent wanted a mixture of face-to-face and remote consultation
  • 75 per cent wanted to be reviewed within 48 hours

Designing a service which meets user needs

We adopted a co-design approach to ensure that the new service met patient needs as much as we possibly could. This included a patient survey and holding a patient engagement and co-production workshop attended by 20 patients. Results of the survey showed that 80 per cent of patients wanted communication via digital means, 75 per cent wanted to be reviewed within 48 hours and 75 per cent wanted a mixture of face-to-face and remote consultation. This valuable information gave us a direction and we sought to redesign the care pathway along these lines.

We created a digital portal using software from Zesty with the aim of putting care directly in the hands of patients. The top priority from patients was getting a quick response with advice when having a flare, and this was something we have tried to address. For the first time, the portal enables patients to log in and access help when they need it most, as well as accessing their records and results, and enabling direct messaging with healthcare professionals.

The aims are to reduce the burden on outpatient appointments and provide a more proactive way to manage patient care, as well as educating patients on how to manage their condition themselves while still being able to access specialist help when needed. The hope is that patients no longer need to wait for conventionally-scheduled outpatient appointments which rarely coincide with disease activity or a need for care.

The healthcare team will also be able to send prescriptions, alerts and appointment reminders, reducing the cost of missed appointments. In addition we hope it will minimise administrative burden and reduce pressure on over-stretched services.

Looking forward

We hope that the project will improve satisfaction with services, access and education about IBD, while reducing trips to hospitals, hospital admissions, length of stay and days off work for patients. We really appreciated the support we got from the HIN in getting to where we are now.

While the project is ongoing, initial feedback is positive. We have been able to change and improve the patient pathway for IBD in a way which focuses on the specific needs of this condition, and did so against some extremely challenging circumstances. We are continuing the rollout of the platform, and when this has concluded we will evaluate the new service fully, with hopefully some positive results to share.