Waiting Lists and the Elective Recovery Plan

NHS waiting lists in England currently stand at around 6 million and are expected to keep growing for another 2 years. The elective recovery plan unveiled by UK Health Secretary Sajid Javid commits to cutting waiting lists and bringing waits for diagnosis back to pre-pandemic levels by 2025. To do this the government has said it will invest in services and increase workforce numbers. It also announced that it would improve information and support for patients with a new online platform called My Planned Care.

We welcome greater support and information for people with Crohn’s and Colitis, but we also know that waits for diagnosis, treatment and surgery can have a huge impact on people’s lives.  

We are calling on the UK government and NHS to commit to investment in IBD services as part of the elective recovery plan, so that every service has the recommended number of IBD nurses and other members of the specialist team. We want to see investigations and surgery for Crohn’s and Colitis to be prioritised based on individual need. We also want people to be supported to stay as well as possible while they are waiting, including nutritional and flare management advice.

IBD services during the coronavirus pandemic

Recently published research by St Mark’s Hospital and Academic Institute has shown what impact the coronavirus pandemic has had on care for people living with Crohn’s and Colitis during the first year of the pandemic. It showed that there is likely to be a considerable number of people waiting for investigations or surgery to manage their condition. It also showed that there is likely to be a significant amount of untreated Crohn’s or Colitis in the community, which could impact people’s quality of life and longer-term health.

Access to Healthcare Survey 2021

These findings have been echoed a year later in our recent access to healthcare survey. Over 7,000 people living with Crohn’s and Colitis took part, telling us about their healthcare during 2021.

They told us that health services have been disrupted by the coronavirus pandemic, with a big impact on care.

We know people had difficulties getting a diagnosis, sometimes waiting longer than a year. We heard from people who had to wait longer than usual to start treatment following a diagnosis. We also heard from people who had colonoscopies and surgeries cancelled.  

We are very grateful for the care and support that healthcare professionals continue to give to people with Crohn’s and Colitis in such difficult circumstances. The results of the Healthcare Survey highlight huge challenges, but also some opportunities as services have adapted to the pandemic. You can read more results from the survey here.

How we’re speaking up for you

We’re calling for IBD surgery and procedures to be appropriately prioritised according to clinical need. Failure to appropriately prioritise surgery and treatment for people with Crohn’s and Colitis increases risks of complications, the need for more costly treatments, and more complex surgery.

We’re also asking for the government to urgently review investigations for people with Crohn’s and Colitis who are at increased risk of developing cancer to ensure that early detection in those who are most at risk is not missed.

We’ve been using the results of this survey in submissions to parliamentary inquiries, briefings for politicians, and meetings with NHS leaders and political decision-makers. And we’ll be using the recent research by St Mark’s Hospital and Academic Institute to add even more evidence to these.

What can you do?

We know waiting for care can be worrying and frustrating. If you have concerns about your health, please contact your IBD team, GP, or NHS 111.

If you’re struggling with symptoms or looking for support managing a flare-up, the information on our website is here to help. 

If you’re having difficulties accessing hospital appointments or tests, you may wish to contact:

• England - Patient Advice and Liaison Services (PALS)
• Scotland – Patient Advice and Support Services 
• Northern Ireland - Patient and Client Council 
• Wales – Community Health Councils 

Join our Campaigns Network, so you can help us use the results to campaign and make sure Crohn’s and Colitis are recognised and prioritised.

Contact your local politician and call on them to support our #BetterIBDCare campaign and make Crohn’s and Colitis a priority. If you’re not sure who you local politician is, you can find out here.

Share your story with us. To help make our messages stronger, we need to tell the real stories of how people with Crohn’s and Colitis have been affected. If you’ve been impacted by waiting times, or had investigations or surgery delayed, tell us about your experience.