Case study: AWARE-IBD, Sheffield Teaching Hospitals NHS Trust

Case study: AWARE-IBD, Sheffield Teaching Hospitals NHS Trust

The NHS Long Term Plan sets out five major, practical, changes to the NHS service model in order for it to be: more joined-up and coordinated in its care; more proactive in the services it provides; more differentiated in its support offer to individuals. One of these is that ‘People will get more control over their own health, and more personalised care when they need it’. Personalised care is a different conversation, starting with 'What matters to you?', (not, 'What is the matter with you?') and recognises people as equals and experts in their own lives. For care to be truly personalised, IBD services need to understand what is important to patients and involve them in service re-design.

People with IBD are experts in their own condition. Giving people living with IBD a voice and active role in the planning, development, delivery, and review of their healthcare services will support and empower them to live well with their condition. Putting people living with IBD at the centre of decision-making is already working. It will create improved services and better patient outcomes, and therefore one of the IBD Standards is dedicated to patient involvement.

Statement 1.6

IBD teams should promote continuous quality improvement and participate in local and national audit.

Statement 1.7

Patients and parents/carers should have a voice and direct involvement in the development of the service.

Who's doing it well?

A large European IMPACT survey from EFCCA found that over half of people with IBD were not able to tell their specialist something that was important to them. IBD services under growing pressure are more akin to ‘rescue therapy’ than preventative or empowering care. Sheffield NHS Trust has experienced a 40% increase in IBD admissions in three years, with a disproportionate representation of people from deprived backgrounds.

Literature highlights that patients and clinicians have different perceptions about disease and treatment characteristics. Clinicians tend to focus on guideline adherence, and this can conflict with patient priorities. Clinicians often prioritise objective measures and longer-term risks, whereas patients may prioritise on the basis of their own experience of disease - prioritising social outcomes and quality of life with a focus on preserving functional ability. A PPI (Patient and Public Involvement) panel in Sheffield (2019) further identified the differences between clinicians’ definition of a flare and their own.

Crohn’s & Colitis UK are leading a 3-year project that aims to re-design IBD services, shaped by those who use the services – people with Crohn’s and Colitis. Crohn’s & Colitis UK are working with partners in Sheffield to deliver the project under a new Health Foundation programme called Common Ambition. Local partners include Sheffield Teaching Hospitals NHS Foundation Trust, School of Health and Related Research (ScHARR) at the University of Sheffield, Epigenesys, Sheffield Microsystems Coaching Academy and VoiceAbility. Whilst the project is being delivered in Sheffield, the learning from this project will lead to better outcomes for people who live with Crohn’s and Colitis across the UK.

The idea

The project will put people affected by Crohn’s and Colitis in control of their care by working in partnership with their IBD team. The team will design a structure for people to tell IBD teams what is important to them, their families and carers; and to ensure their voice is heard in appointments. This will include using an app to collect information and deliver it to doctors, nurses and other healthcare professionals.

Patient engagement is at the heart of this project, and as such, people with Crohn’s and Colitis will be trained by the Sheffield Microsystems Coaching Academy to help steer the changes. On top of this, all 4,000 patients from the Trust will be invited to engage with the project, and advocacy support is in place to make sure that people with Crohn’s and Colitis of all ages, genders, and ethnicities are represented.

Evaluation will show how, and by how much, putting patients in control of their care improves outcomes.


This project is in the early stages and there are no service improvements to share just yet.

The project has recruited a patient coach to lead service improvement activities on the AWARE-IBD programme. The role of the patient coach is the same as other microsystem coaches in the Sheffield Microsystems Coaching Academy, however, their lived experience of IBD and the Sheffield IBD service will bring a new and different perspective to the process of making service improvements.

As a novel role, the patient coach job description was matched to predetermined job criteria on the Agenda for Change spine. The project team worked with HR to ensure flexibility in adapting this to a person with IBD and matching to the AfC criteria, whilst ensuring sufficient remuneration and recognition of the skills and authority required for the post-holder. The pay grade was renegotiated from a Band 7 to a Band 5, and the job title was changed to ‘AWARE-IBD Project Support Officer’. You can download a copy of the final job description here.

People with Crohn’s and Colitis are experts by lived experience, so they know what makes a good and bad experience of care. To make real change in the way we re-design IBD services, we need to work with these experts. This project has the potential to teach us lessons we can use across the UK and is a unique opportunity for thousands of people with Crohn’s and Colitis to get involved and lead to real changes. We’re grateful to the Health Foundation for selecting us to take forward this incredibly important work.

Sarah Sleet, CEO at Crohn's & Colitis UK

Date created: April 2021