Behind the Headline: IBD UK Report 2021

This week marked the launch of the IBD UK Report, Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change.

This report has been many years in the making, culminating the most comprehensive study of IBD services ever carried out in the UK. This is a revolutionary moment for IBD services and for people like me, who live with the disease.

Never before have we had something so powerful behind us to drive change. So, for my April blog post, I’m going to give you a round up of everything you need to know about the IBD UK report and why it’s so important.

There are 4 critical themes in the report. These are:

Diagnosis

People are waiting too long for a diagnosis of Crohn’s or Colitis with over a quarter waiting more than a year.

Personalised care and support for self management

Crohn’s and Colitis affects much more than the gut. Yet, only 9% of patients reported having a personalised care plan addressing all aspects of their care.

Fast access to specialist care

Having fast access to specialist advice can reduce the impact of a flare or make sure the worst effects are avoided. Yet, nearly three quarters of hospital stays over the last 12 months were emergency admissions. I had first hand experience of this in 2019. Emergency admissions are costly to the NHS and the individual and can be prevented with appropriate flare management pathways.

MDT working

IBD care is not well coordinated and all specialisms are inadequately staffed. Mental health support is vital yet only 2% of services reported having enough psychologists. Again, I have first hand experience of this, having paid privately for mental health support following my emergency stoma surgery. I would be in a much darker place now had I gone without it. How many others are there like me? But who might not be as fortunate to get private help? IBD affects so much more than  the gut. It has a wide ranging impact so we need wide ranging expertise available in the NHS.

All of this is followed by a call to action.

The report calls upon governments to implement a clear strategy to improve care for people living with IBD and to lay out a plan for the next 5 years. This plan needs to ensure that everyone with IBD has consistent, safe, high quality, personalised care, whatever their age and wherever they live in the UK.

Why is the report so important?

Because it culminates the responses of 166 services, that's almost three quarters of all services in the UK. Because it culminates the responses of 10,222 people living with IBD, thats representation from 99% of services. This is a completely unique set of data and the most detailed picture of IBD care that we have ever had. And unfortunately it’s not a pretty one.

The report shows us that IBD is a serious condition that needs serious attention. The current state of play is costing us all dearly, whether you have IBD or not.

IBD services are not being prioritised by our governments, so our NHS trusts and health boards are left without the funding they need to provide quality IBD care. This means more and more people are going longer without being diagnosed and/or the treated to get their condition under control. This means yet more costly emergency hospital admissions.

This costs those living everyday with a disease that’s out of control.

This costs their loved ones and support networks.

This costs our economy.

This costs our precious NHS that is already so overburdened and stretched.

There have been cracks in the provision of IBD care for many years. But, these cracks are widening quicker than ever because of the pandemic. And the situation is only set to get worse. A couple of years ago, the amount of people living with IBD was thought to be 300,000. Now, there are over 500,000 people in the UK living with the disease.

This report gives us the data we need to show governments that change is vital. We must use it as a drive for change. To protect those living with IBD. To protect our NHS. To protect us all.

How can you help change the future of IBD care?

You can help improve the future of IBD care by emailing your local MP to ask for their support.

It takes just a couple of minutes to personalise and send a template email put together by Crohn’s and Colitis UK. At the very least, it will raise awareness of this important report and that can only be a good thing.

The Report

You can read the full report with my patient story at page 40 or the executive summary for a shorter version containing the key points.

Together we can take this forward and achieve real change. Please stand up with us and start an army for this revolution. #betterIBDcare

Love Me

& My Friend Wendy.