Making change happen

The Crohn’s and Colitis Care in the UK report, published earlier this year as part of our work leading IBD UK, showed that many people are still waiting too long for a Crohn’s or Colitis diagnosis. It also highlighted that people don’t always have access to the specialist treatment they need. The great news is that the report is already having an impact.

Almost 3,000 people either attended or watched a recording of our launch event. It sparked media coverage around the UK, including on BBC Online, ITV Wales News and in a wide range of healthcare-related publications. There’s been a huge amount of engagement on social media, with content related to the report being viewed more than 2.5 million times. Politicians from all parties also shared their support through social media on World IBD Day in May.

The report has been sent to health ministers and chief medical officers around the UK, CEOs of all hospital trusts and boards, healthcare commissioners, and other policymakers. Together with our partners in IBD UK, we also wrote an open letter to former UK government health secretary, Matt Hancock, calling on the Government to make IBD a priority with a long-term strategy, to improve care for those with Crohn’s and Colitis.

We are grateful to everyone who took part in the e-action – almost 9,000 emails were sent to politicians across the UK. As a result of your efforts, politicians have contacted local hospitals to ask how they are planning to improve Crohn’s and Colitis care and questioned health ministers in all four nations on what they are doing to address the issues raised in the report.

Sam Newton from Lincolnshire, who has Crohn’s, is one supporter who took part. Prompted by Sam’s email, her MP wrote to her local hospital trust on her behalf. The trust responded by setting out the areas it is focusing on to improve care. These included information for newly diagnosed patients, reviews with a dietitian, and increasing the number of IBD nurse specialists. The IBD nurse specialist also got in touch with Sam to review her treatment.

“We need faster, better treatments, and more understanding of the impact Crohn’s or Colitis has on our lives,” says Sam. “I’m really pleased I took the e-action. It was such a simple process and very interesting to see the response from the trust. I was glad somebody listened, and it gave me a voice for a change.”

Crohn’s & Colitis UK’s policy manager, Jackie Glatter, says: “A big thank you to everyone who has got involved in the campaign, whether through taking the e-action or sharing on social media. The report has been a fantastic springboard to raise awareness of the issues that need addressing but there is still much more to be done. We’ll continue to campaign for better care for everyone with Crohn’s and Colitis, and to push IBD up the NHS and political agenda.”

Our next steps

• The data used in the report was collected prior to coronavirus, but we know that many problems have been made worse by the pandemic. To bring our knowledge up to date, we’re following up last year’s Life in Lockdown survey, with a survey of your experience of care in 2021. Share your experiences here.

• We’ll be meeting NHS leaders and parliamentarians across the four nations and holding a series of parliamentary events to improve understanding and make a strong case for change.

• As part of our new three-year strategy, we’ll continue our work towards earlier diagnosis and ensuring health services meet the IBD Standards for consistent, safe, high-quality, personalised care for everyone with Crohn’s and Colitis.