A few years ago, before COVID, a dozen or so Crohn’s patients gathered in a room at Bowel and Cancer Research HQ (now BRUK) with the task of brainstorming the issues and costs that a patient with Crohn’s can be confronted with.
It was part of the process helping a start-up medical company, Motilent, that the charity was providing PPI input to. The aim was partly to show that the early diagnosis of the disease and better monitoring of the effectiveness of treatment would not only provide cost savings to the NHS (or other healthcare provider) but also to the patients themselves.
It was the first time I had been seated around a table with so many fellow patients. Everyone quickly overcame any nerves they may have had and we had a lively, open & honest discussion on the challenges we all faced. (I even learnt what a PICC line was!)
We then split ourselves into sub-groups and brainstormed around a simple diagram that I had produced to prompt our discussions.
When we had completed the exercise I compiled the results and turned them into the mindmap shown below. There are links to download the chart as either pdf or jpg.
This is not exhaustive and please bear in mind this was produced several years ago and some of the detailed items may have changed – for instance wi-fi being available in many situations which opens up in-patients’ choices for entertainment rather than paying for use of overbed screens. – but overall the headlines remain the same.
I think we were all surprised at just how many things we now experienced having been diagnosed with Crohn’s Disease. This is, no doubt, true of many chronic conditions.
I did a very quick calculation around having my ileostomy taking into account time spent on attending OP appointments, procedures, recovery, time off of work etc. In broad terms 8% of my time was taken up with managing my health!