The IBD UK patient survey

Susie Slattery joined Crohn's & Colitis UK in April 2019 as Patient Engagement Manager in the Health Service Development. In her blog she reflects on her diagnosis and being involved with the launch of the IBD Patient Survey. 


I was diagnosed with Crohn’s Disease in 2015, it has been a journey with ups and downs and everything in between. During this journey I’ve been lucky enough to start working at Crohn’s & Colitis UK, as the Patient Engagement Manager in the Health Service Development team. As such, I have been working on delivering the IBD Patient Survey for IBD UK.

It is an incredibly exciting project to be part of; knowing the potential the survey has to give people living with Crohn’s and Colitis a unified voice, on how our IBD services are doing and how they can improve. A real chance to make a difference.

I have been extremely thankful for the care I have received for my Crohn’s Disease and I truly respect my IBD Team, they’ve been there to support me when the chips are down. Does this mean my care is perfect … No. Does this mean I would love to work with them to improve care, not only for myself, but others … Yes.

But where to start?  What level of care should I be receiving? If you’re like me this can be a difficult question to answer. I’d looked at information on the Crohn’s & Colitis UK website and talked in-depth with my IBD team about treatment options, but I didn’t have a solid idea of what my care could be like, until I looked at the IBD Standards. 

The new IBD Standards were launched on 20 June 2019. They were created by IBD UK, patients and healthcare professionals working together and set out what good quality care looks like at every stage of the Crohn’s and Colitis journey – from diagnosis through to ongoing care.

I am very excited that for the first time people living with IBD across the UK will be able to have their say about how their service is doing – judged against the IBD Standards. The IBD Patient Survey is the first step is making the Standards a reality – where everyone, wherever they live and whatever their age, receives safe, consistent, high-quality, personalised care.

You may be wondering how the IBD Patient Survey will do this? Firstly, the anonymised answers to the survey will be available to your IBD Team, this will tell them what they are doing well and where they could improve your care, for example, reducing the amount of time it takes to see your IBD team during a flare (yes please).

Secondly, your IBD team can use the results to push through real change, providing data to support business cases for the additional resources they need to improve your support. With the IBD Patient Survey we can work with our IBD teams and get involved in health care developments – this is your chance to have your voice heard.

If you’re living with Crohn’s or Colitis – please complete the survey and if you know someone who has IBD, please tell them about it.  

Patients have power, they are experts through their experience of living with Crohn’s and Colitis. The best person to tell you what works and what doesn’t in IBD services is the patient.  We want to help patients recognise that power and use it to improve healthcare services through the IBD Patient Survey