And lastly, the role of nurses is so important to the experience of patients. They are there throughout, the most constant presence during a hospital stay, and I feel very lucky to have had such a great nursing team.

But when tests come back in the high/at risk range and no one is able to say if this is an issue they will address it can leave patients feeling like something is being overlooked or questioning why a test is being done at all. Explanation and communication is critical.

As a patient you’re prodded and poked for various tests, and in the US the results would come through to my app at the same time as my healthcare team received them. For someone who loves data, it was fantastic to have this speed and the clarity on what has been tested.

At 6am the first thing I was asked to do was sign a document, but when I was asked for the time to read what I was signing I was told that I would be holding up the 20 patients behind me. This reflects both the pressures on healthcare systems but also does nothing to build trust or feel informed.

There is also an information overload faced by patients at a time when they have so much going on. It’s important that time is given to really explain any information and have patients digest it.

On this occasion they found what they were screening for, and so surgery, but had they not I would have been unlikely to go back in on time for my next scope and face again the battle with insurance. The risk here is that the opportunity to catch something early is missed to the harm of patients.

for me repeating something that as someone with a high risk of CRC from years of ulcerative colitis should be a routine preventative screening.

“Friction” in the healthcare experience matters. While I’ve never been rushing to have a colonoscopy, in the U.K. this was ultimately a straight forward thing to schedule. In the US, while it was simple to schedule the subsequent insurance admin burden (and bills) would be a major deterrent…

My key takeaways: the challenge of advocating for health equity is unfortunately only growing with global political climate, the burden of #ibd on all aspects of life can’t be underestimated, and there seems to be no debate left on whether a ‘top down’ approach is right in IBD.