Crohn's and Colitis Care in the UK: The Hidden Cost and a Vision for Change is the result of significant input from hundreds of healthcare professionals and thousands of people living with Crohn's or Colitis.
A huge thank you if you took part in the IBD Patient Survey in 2019 and gave evidence to this report.
The research took place before coronavirus, but we know that many of the problems you were already facing have been made worse by the pandemic. Issues such as delays in diagnosis, long waits for investigations and surgery, and little access to much needed psychological and dietetic support.
IBD (Inflammatory Bowel Disease) teams have been working hard, and we know the past year hasn't been easy. But we need to make sure, as the coronavirus waiting lists are tackled, people with Crohn's and Colitis (Crohn's disease, Ulcerative Colitis, Microscopic Colitis, Indeterminate Colitis and Crohn's Colitis) aren't pushed to the back of the queue.
What have we found?
People wait too long for a diagnosis of Crohn's or Colitis.
- 26% waited more than a year
- 41% visited A&E at least once
- 12% visited A&E three or more times
- 32% said they were not offered any info when diagnosed
We're calling for faster diagnosis, and for better information and support.
Crohn's and Colitis affect more than the gut, involving many other parts of the body and mind, yet these are often ignored or treated in isolation.
- 89% found it hard cope over the previous year.
- 91% did not have a personalised care plan.
- 48% were not asked about fatigue.
- 29% were not asked about pain.
- 60% were not asked about emotional wellbeing.
We're calling for everyone with Crohn's and Colitis to have a plan that addresses all aspects of their care, support to reach their goals and help to live well with their condition.
People with Crohn's and Colitis can't get specialist treatment and care quickly enough when they need it. This causes high emergency hospital admissions and potentially avoidable flares.
- 70% said they'd had one or more flares in the previous 12 months, with 14% reporting more than five.
- 72% of hospital stays over the previous 12 months were emergency admissions.
- 22% waited more than 18 weeks for planned IBD surgery.
We're calling for everyone with Crohn's and Colitis to have faster access to specialist care and advice when they need it.
People with Crohn's and Colitis don't have access to the full range of specialist care they need, and it's not well coordinated, or based on all their needs.
- 14% of IBD services across the UK reported having enough IBD nurse specialists.
- 13% reported having enough pharmacists to meet the IBD Standards.
- 7% reported having enough dietitians to meet the IBD Standards.
- 2% reported having enough psychologists to meet the IBD Standards.
- Only 48% of people felt their care was coordinated with other specialist services.
We're calling for fully resourced specialist teams, with more IBD nurse specialists, so that where you live is not a barrier to getting what you need. And care that's properly joined up between everyone involved.
What do we want to change?
We urgently need better care for people with Crohn's and Colitis. And we need your help to get this this issue in front of politicians across England, Scotland, Northern Ireland and Wales.
It's time for Inflammatory Bowel Disease to be taken more seriously. IBD UK wants to see better care for the half a million people living with these complex, fluctuating and debilitating conditions. We're asking governments across the UK to make IBD a priority and communicate a clear strategy of how they intend to improve care over the next 5 years.
Will you help us? Take action. Email your politician to push IBD up the agenda.
Sorry this campaign has now closed.