New report reveals need for better care for IBD

A newly released report, Crohn’s and Colitis Care in the UK, shows we’re still a long way from achieving high-quality, personalised care for all

A major report into the care provided to people living with Crohn’s and Colitis in the UK was released at the end of April.

Published by the IBD UK partnership, in which Crohn’s & Colitis UK takes a leading role, the report is based on surveys of more than 10,000 people living with Crohn’s and Colitis, and self-assessments by over 70% of IBD services around the country, showing how well care meets the IBD Standards.

The research took place before the pandemic, and in March 2020 local reports for each hospital were published (available to read at www.ibduk.org/reports). This new report looks at the bigger picture across the UK, “revealing a hidden burden of ill-health and unmet need, setting out a vision for change,” according to Sarah Sleet, CEO of Crohn’s & Colitis UK.

“Crohn’s and Colitis are serious conditions which need serious action,” says Sarah. “We need to see better care for the estimated 500,000 adults and children living with Crohn’s and Colitis across the UK. Unacceptably high levels of emergency care and delays to diagnosis, investigations and surgery have been made worse by the pandemic.

“Doctors, nurses and other healthcare professionals are doing a great job, but we need the support of governments to transform care. That’s why we’re asking for a long-term strategy for IBD.”

As we come out of the pandemic, we want to create a society for people with Crohn’s and Colitis to thrive, not just survive

The report found that it is taking too long for people with Crohn’s and Colitis to be diagnosed, meaning they suffer a delay in receiving the treatment and support they need, resulting in potentially avoidable flares and emergency care. Some 26% waited more than a year and 41% visited A&E at least once before they were diagnosed. This should not be the norm; we need to see faster diagnosis, and better information and support.

The report does highlight hospitals that are trying new things to better support people with Crohn’s and Colitis. The diagnosis clinic at St Mark’s Hospital in London was set up to help newly diagnosed patients learn about their condition, equip them with the skills and confidence to manage it, and signpost them to other sources of information. This is an approach we would like to see as standard across the country.

The whole person

Crohn’s and Colitis can affect the whole person, but the results of the report show that more attention must be given to symptoms such as pain, fatigue and anxiety. Right now, people are often managing these challenging symptoms on their own without the support of their hospital team. There is little access to much- needed psychological and dietetic support.

There are also too many emergency hospitalisations, accounting for 72% of all IBD-related hospital stays. We know that fast specialist treatment can prevent these, so we need more routes to quicker help during flares. For example, Edinburgh’s Western General Hospital has a clinic that helps people with Crohn’s or Colitis to see an on-call consultant gastroenterologist on the day so they can start the right treatment immediately.

Specialist professionals

IBD services also need to be better resourced and staffed, so that where you live is not a barrier to getting what you need. The self-assessments taken by the hospitals show that few of them have enough IBD nurse specialists, pharmacists and dietitians to meet the IBD Standards.

Anisha Gangotra has felt frustrated by lack of joined-up care

Image supplied

The story of Anisha Gangotra, who lives with Colitis, is an example of where care works and where it doesn’t. “I spent five months travelling in South America and my IBD nurse was my first port of call to discuss how to manage my Colitis safely and effectively. This gave me peace of mind, reassurance and necessary specialist advice to enable me to do something I’d always wanted to do,” she says. However, like so many people, Anisha remains frustrated by a lack of joined-up care, where it feels like healthcare teams don’t speak to each other.

“My GP and consultants are unable to see my patient records held by the other. I have to ask for blood test results to be printed by the GP and a copy left at reception so I can scan them and send them to my IBD nurses for my hospital records. There have also been instances where GPs have missed important red flags on my blood tests because there isn’t an effective system in place.”

In short, the report underlines the need for faster diagnosis, personalised care, rapid access to expert advice and treatment, and fully resourced teams with more IBD nurse specialists.

Help us get Crohn’s and Colitis recognised as an NHS priority

Read the report onlccuk.link/newreport

Email your political representative to ask them to support our campaign for better IBD care.

Visit www.ccuk.link/bettercare or scan the QR code.