How we're working to improve your healthcare in 2022

What happened in quality improvement in 2021?

It was a big year!

We welcomed eight new nurses to our nursing programme, taking us up to 22 Crohn’s & Colitis UK IBD nurse specialists. We delivered four virtual advice line training sessions to 91 attendees and worked in partnership with the NHS and government in projects across the UK. We also started a new healthcare professional newsletter. That’s all on top of the release of IBD UK’s Crohn’s and Colitis care in the UK report.

That report revealed that lots of people wait too long for diagnosis. What does this mean?

An estimated 500,000 people in the UK are living with Crohn’s or Colitis, but overall public knowledge and understanding of the conditions remains low. 

When diagnosis doesn't happen early enough, this can impact on many aspects of life and result in the conditions being harder to treat.

• 26% of those responding to the IBD patient survey waited more than a year for a diagnosis
   
• 41% had visited Accident and Emergency (A&E) at least once before being diagnosed, with 12% visiting three or more times

So, what can we do about it?

We’re planning a campaign in the autumn to raise awareness of the symptoms of Crohn’s and Colitis with the public. Alongside this we will be supporting community healthcare professionals, including GPs, nurses, and pharmacists, to identify when someone might be living undiagnosed with one of the conditions.

We will continue to raise awareness of Crohn’s and Colitis with politicians across the UK and work with political and NHS decision-makers so that IBD, and the need for earlier diagnosis, is a priority.

Having access to the right care at the right time is important for people living with Crohn’s or Colitis. We are working on projects across the UK to improve the healthcare you receive. We are excited to be working with local partners in Sheffield on a three-year project called AWARE-IBD to re-design local services, shaped by people with Crohn’s and Colitis.

As chair of IBD UK we also continue to share tools and best practice to support healthcare professionals to improve care.

What evidence do we have to show decision-makers how important this is?

All of this work will be supported by the new Evidence and Insight Team. They will review research already published and collect new data, so we can understand people’s experiences of getting a Crohn’s or Colitis diagnosis and the barriers they faced.

Where do IBD nurse specialists fit in?

We’re still working with our Crohn’s & Colitis UK IBD Nurse Specialists and so proud of the work they do. We’ve started this year by focussing on how they can deliver more personalised care and will focus on different areas of healthcare across the year.