Crohn’s & Colitis UK worked with local partners in Sheffield, as one of only four projects to be funded under a new Health Foundation programme called Common Ambition.
The aim of the 3-year project was to re-design IBD services, shaped by those who use them – people with Crohn’s and Colitis. Whilst the project was 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.
On this project, we worked to re-design services and deliver improved outcomes for people living with Crohn’s and Colitis.
To do this, we worked in partnership with:
We designed a structure for people to tell IBD teams what is important to them, and to ensure their voice is heard in appointments. This included using an app developed by epiGenesys, that collected information from people living with Crohn's or Colitis and delivered it to doctors, nurses, and other healthcare professionals.
Uniquely, people with Crohn’s and Colitis were trained by the Sheffield Microsystems Coaching Academy to help steer the changes. Larger scale involvement ran alongside, with all 4,000 patients from the Trust being invited to engage with the project. We recognise that the Crohn’s and Colitis community is both large and diverse.
This project aimed to represent this community through advocacy support from VoiceAbility, to make sure we heard from people with Crohn’s and Colitis of all ages, genders, backgrounds, and ethnicities. Crohn's & Colitis UK were the project lead, supporting with patient involvement throughout, including chairing the Patient Oversight Committee.
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 – so that the services of the future are based on what matters to them. 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
Evaluation showed how, and by how much, putting patients in control of their care improves outcomes. This was led by the Sheffield Centre of Health and Related Research (SCHARR) at the University of Sheffield.
Whilst the project was delivered in Sheffield, we ensured that the voices of people living with Crohn’s and Colitis across the UK were heard and shared regular news and updates.
We are excited that as part of the AWARE-IBD project, people with Crohn’s and Colitis have designed a questionnaire to measure their experience of using health services. You can read more on its development here. The PREM became a key outcome measure for the research evaluation and allowed us to formally measure how the service was addressing what was important to patients. Initial statistical validation shows it to be a valid and reliable survey instrument, highlighting the importance of giving patients autonomy in choosing and refining items during survey development.
We invited everyone who received IBD care from the Sheffield IBD service to answer the question “What Matters To You?”. People living with IBD told us that Access, Communication and Patient-Centred Care mattered most to them.
Throughout the project we have tested four service changes:
The patient-led service changes were only made possible by our patient coach, who completed the Microsystems Coaching Academy training and has been leading the IBD Team in weekly service improvement meetings since May 2022. They have driven the effective delivery of the microsystem and wider improvement activities, including high level engagement with patients, clinicians, specialist nurses and other professional groups. A wider group of over 500 service users have inputted into the co-design of service changes on an ad-hoc basis via online surveys and workshops.
You can also take a look at the projects newsletters below for full updates and an opportunity to meet the team:
If you are interested in learning more or have any questions, please contact our Health Services Team.
The Health Foundation is an independent charity committed to bringing about better health and health care for people in the UK. And Common Ambition focuses on partnerships where people, families, healthcare professionals and researchers work together to improve health care.
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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
Providing information about Crohn’s and Colitis.
Listening and talking through your situation.
Helping you to find support from others in the Crohn’s and Colitis community.
Providing details of other specialist organisations.
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.
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