Going about daily life in a time of uncertainty
“Just keep in mind: the more we value things outside our control, the less control we have.”
Epictetus
Day 2.
I work at the intersection of medicine and science, patients and public, education and research, at home and abroad, in person and online. My goal: to improve the lives of people with IBD by providing excellent clinical care and research that predicts outcomes and guides more effective management. Successful implementation means getting people on the right treatments the first time, avoiding hospitalisation and surgery, and leading a normal quality of life.
Travelling today. I have a meeting in London. It is a small group. I am presenting. Travelling today is in accord with all guidance nationally and from my employer. Yet I am a nervous traveller today. I’m not sure how rational that is. It is certainly very unlike me. I think I’ve spent too long scouring Twitter for accurate news the past 48 hours. Some of the accounts from Lombardy are harrowing — once or twice I had to stop reading. My heart goes out to my medical colleagues working there now. How prepared are we here?
At the hospital yesterday it felt a bit like the calm before the storm. Or was I imagining that? How much of my perception was biased by my position, my interpretation of events — elapsed and to come.
The airport is quiet this morning, but my flight is full. People are quiet, but aren’t they always? Every cough from elsewhere scrutinised. Will this be my last business trip for a while? Things are moving fast. The next 2 months would have been a blur of logistics, data analysis, talk writing, presenting, reporting via social, jetlag, clinic, repeat. Catching the odd day off here and there but mostly working through — much of the work travel and meetings focus around weekends. It is hard work, but I love it. The Brazilian national IBD meeting is in 2 weeks; I have 4 lectures to deliver and a very important research collaboration to develop. Should I still go?
Assume decisions are taken out of my hands and all travel is cancelled. What then? How to fill the time? This won’t be a holiday. I have no shortage of work to do — much of it urgent. But somehow the priorities are shifting in my head. At times I am struggling for focus. This thing (I don’t want to call it a scare, not a crisis, so for now thing) awaits. It will likely dominate the day to day. Discussing with colleagues I know others share this feeling; suddenly many activities seem trite and irrelevant — they aren’t of course — it is that different lens of perception again.
Deep breath and (re)focus. My research programme matters; it is important. I believe that deeply and passionately. If I did not, I would not do it. Why? Because I think too many people living with Crohn’s disease and ulcerative colitis get a really bad lot. They suffer too much on a day to day basis as a result of their IBD. We don’t have good enough drug therapies, and we lack good predictive models. Who should we treat with what drug when? Who is at risk of a flare, of disease progression, of hospitalisation, surgery, gut failure, and the complications of our treatments? More on this later.
What is the optimum model for delivering IBD care? I’ve been thinking about that a lot recently. Already our clinics are bursting at the seams. We are looking after more people living with IBD. We are improving outcomes by monitoring more closely and adjusting therapies against tighter targets. We “treat to target” and this works remarkably effectively. Without predictive power our best approach is tight monitoring. We have deployed this successfully. But by and large we have don’t this without changing the core methods of out-patient clinic follow-up (I wrote about this in a previous blog post 2 years ago). Many of us are working on new digital health methods to transform the entire care pathway for IBD patients. This is the very near future: digital tools that will deliver world class digital IBD care to patients wherever they are in the world, with patients in charge. This is a big topic and will be the subject of another blog.
Today’s meetings almost done. Soon it is home to Naomi and Rex — no kids this week. I hope they are ok; I think of them all the time and miss them deeply. Tomorrow is Thursday, our big IBD clinic day … running as normal this week. I want to keep our patients safe …
… and suddenly it all makes sense. My job, my duty, my role. I am a doctor; a gastroenterologist; an IBD physician. My duty is to my patients, our patients, all our patients. And to my colleagues, not just medical but all the multi-disciplinary team. Everyone is looking for answers, for guidance for leadership. This is a deeply uncertain time. But we have the power, the capacity, the authority to make key decisions now that will help the fight.
I am funded by UKRI (UK Research and Innovation) as a Future Leaders Fellow working on predicting outcomes in IBD. For the next couple of months at least I will refocus and prioritise a leadership role locally, nationally and internationally. This work has already started, but I will now devote all my energy here so I can help others more. Tomorrow I will start to outline this plan and the communications strategy for IBD teams and patients to follow.
For now, I would like to remind everyone to please wash your hands regularly and properly. Please let me share the latest advice from IOIBD for people with Crohn’s disease or ulcerative colitis.
Stay safe and be especially kind to others during this uncertain time. See you tomorrow.